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| --><rss xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:wfw="http://wellformedweb.org/CommentAPI/" xmlns:itunes="http://www.itunes.com/dtds/podcast-1.0.dtd" xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:media="http://www.rssboard.org/media-rss" version="2.0"><channel><title>Invisible Not Broken</title><link>http://invisiblenotbroken.com/home/</link><lastBuildDate>Wed, 01 Aug 2018 22:25:05 +0000</lastBuildDate><language>en-US</language><generator>Site-Server v6.0.0-15063-15063 (http://www.squarespace.com)</generator><itunes:author>Monica Michelle</itunes:author><itunes:subtitle>Invisible Not Broken- Invisible Illness and Chronic Illness Podcast</itunes:subtitle><itunes:summary>An Irreverent interview podcast for people with chronic illness, invisible illness, disability, and chronic pain. Be Kind. Be Gentle. Be A Bad Ass, and don't forget to share this episode with another spoonie.</itunes:summary><description>An Irreverent interview podcast for people with chronic illness, invisible illness, disability, and chronic pain. Be Kind. Be Gentle. Be A Bad Ass, and don't forget to share this episode with another spoonie.</description><itunes:explicit>yes</itunes:explicit><itunes:owner><itunes:name>Monica Michelle</itunes:name><itunes:email>[email protected]</itunes:email></itunes:owner><itunes:category text="Health"><itunes:category text="Self-Help"/></itunes:category><itunes:category text="Health"><itunes:category text="Alternative Health"/></itunes:category><itunes:category text="Science & Medicine"><itunes:category text="Medicine"/></itunes:category><itunes:type>episodic</itunes:type><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59949b2cd482e94acddc0ac3/1502911277987/1500w/invisible-not-broken-invisible-illness-podcast-websize.jpg"/><item><title>Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Wed, 08 Aug 2018 17:00:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/7/25/nmo-depression-chronic-fatigue-homeschool-chronic-pain-and-being-a-spoonie-teen</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b58be3d1ae6cfc82b9e5777</guid><description>Click To Read Being A Teenager With Chronic Illness, NMO, Depression, ME, | |
| Homeschool , and Chronic Pain and listen to the chronic illness podcast | |
| episode</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5b590b718a922d06e0128e68/5b590b7170a6ad1470e90598/1532563176603/nmo-depression-chronic-fatigue-homeschool-chronic-pain-and-being-a-spoonie-teen.jpg" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" alt="Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain " data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5b590b718a922d06e0128e68/5b590b7170a6ad1470e90598/1532563176603/nmo-depression-chronic-fatigue-homeschool-chronic-pain-and-being-a-spoonie-teen.jpg?format=1000w" /><br> | |
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| <h1 class="text-align-center">Links</h1><p class="text-align-center"><a target="_blank" href="https://morethanaspoonie.wordpress.com/">More Than A Spoonie Blog</a></p><p class="text-align-center"><a target="_blank" href="https://www.instagram.com/youngpeople_chronicillnesses/">Young People With Chronic Illness</a></p><p class="text-align-center"><a target="_blank" href="https://www.audible.com/ep/2book?source_code=GO1GBSH04101890HO&device=d&cvosrc=ppc.google.audible&cvo_campaign=226473129&cvo_crid=276520070316&Matchtype=e&gclid=Cj0KCQjwv-DaBRCcARIsAI9sba-Z4bSus8H1OLgcy00PYfl2mklk7LH7HVy4XgEFAtrrcgvWjUnYDVIaAhszEALw_wcB">Audible</a></p><p class="text-align-center"><a target="_blank" href="https://www.trutv.com/shows/adam-ruins-everything/index.html">Adam Ruins Everything</a></p><p class="text-align-center"><a target="_blank" href="https://www.uniqlo.com/us/en/women/bras-and-underwear?gclid=Cj0KCQjwv-DaBRCcARIsAI9sba-T01wAPO1RFd1L1Dd2TK7qqTM2_HwngN5PblI8N5Ipbw7CxZ0Sc00aAmdsEALw_wcB">Uniqlo Bras</a> and <a target="_blank" href="https://www.uniqlo.com/us/en/women/bra-tops">Bra Tops</a></p><p class="text-align-center"><a target="_blank" href="https://guthyjacksonfoundation.org/">Victoria Jackson</a></p><h3 class="text-align-center"><strong>Favorite Podcasts </strong></h3><p class="text-align-center"><a target="_blank" href="http://sickboypodcast.com/">SickBoy</a></p><p class="text-align-center"><a target="_blank" href="https://www.missedinhistory.com/podcasts">Stuff You Missed in History Class</a></p><p class="text-align-center"><a target="_blank" href="https://www.lorepodcast.com/">Lore</a></p><p class="text-align-center"><a target="_blank" href="http://podcasts.joerogan.net/">Joe Rogan</a></p><p class="text-align-center"><a target="_blank" href="http://dealwithitshow.com/">Deal With It</a></p><p class="text-align-center"><a target="_blank" href="https://www.mythpodcast.com/">Myths and History</a></p><p> </p><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652">Neuromyelitis </a><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652">optica</a><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652">,</a> <a target="_blank" href="https://www.nimh.nih.gov/health/topics/depression/index.shtml">depression</a>, <a target="_blank" href="https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease">adrenal insufficiency</a>. Nmo is similar to MS</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>4</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>A funny sarcastic independent little girl</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would’ve been finishing high school</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Everything is exhausting.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Better options to help relieve symptoms</p><p><strong>Do you have any life hacks? *</strong></p><p>Yes! 1. water bottles 2. towels dressing gown 3. homeschooling</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>I can’t remember an example. But people are always very impressed thanks blind because I manage well</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.</p><p><strong>What is your best coping mechanism? *</strong></p><p>PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.</p><p><strong>What is your favorite swear word?</strong></p><p>Shit</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>How this affects my mental health, and of course my work as a patient advocate.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My heated blanket! It’s like a full body heating pad. Only about £25 amazon.</p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Links | |
| More Than A Spoonie Blog | |
| Young People With Chronic Illness | |
| Audible | |
| Adam Ruins Everything | |
| Uniqlo Bras and Bra Tops | |
| Victoria Jackson | |
| Favorite Podcasts | |
| SickBoy | |
| Stuff You Missed in History Class | |
| Lore | |
| Joe Rogan | |
| Deal With It | |
| Myths and History | |
| What is your disorder? * | |
| Neuromyelitis optica, depression, adrenal insufficiency. Nmo is similar to MS | |
| At what age did your disorder become a daily issue? * | |
| 4 | |
| Who were you before your illness became debilitating? * | |
| A funny sarcastic independent little girl | |
| What would you do if you were not dealing with your invisible illness? * | |
| I would’ve been finishing high school | |
| What would you like people to know about your daily life? * | |
| Everything is exhausting. | |
| What would make living and moving in the world easier for you? * | |
| Better options to help relieve symptoms | |
| Do you have any life hacks? * | |
| Yes! 1. water bottles 2. towels dressing gown 3. homeschooling | |
| What kind of support do you get from family or friends? * | |
| I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it. | |
| Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? * | |
| I can’t remember an example. But people are always very impressed thanks blind because I manage well | |
| How has your invisible illness affected your relationships? * | |
| I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me. | |
| Is there anything you are afraid to tell people in your life? * | |
| That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself. | |
| Does the fact that your disease is invisible change how healthcare professionals treat you? * | |
| No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff. | |
| What is your best coping mechanism? * | |
| PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up | |
| What are you the most concerned about and the hopeful for in the future? * | |
| I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options. | |
| What is your favorite swear word? | |
| Shit | |
| Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with. | |
| How this affects my mental health, and of course my work as a patient advocate. | |
| What is the hardest and/or best lesson your condition has taught you? | |
| The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better. | |
| What is the best purchase under $100 that helped your life | |
| My heated blanket! It’s like a full body heating pad. Only about £25 amazon. | |
| </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>1:04:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b58be3d1ae6cfc82b9e5777/1533747621871/1500w/nmo-depression-chronic-fatigue-homeschool-chronic-pain-and-being-a-spoonie-teen.jpg"/><itunes:title>Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain</itunes:title><content:encoded><![CDATA[<p>Links</p><p><a href="https://morethanaspoonie.wordpress.com/" target="_blank">More Than A Spoonie Blog</a></p><p><a href="https://www.instagram.com/youngpeople_chronicillnesses/" target="_blank">Young People With Chronic Illness</a></p><p><a href="https://www.audible.com/ep/2book?source_code=GO1GBSH04101890HO&device=d&cvosrc=ppc.google.audible&cvo_campaign=226473129&cvo_crid=276520070316&Matchtype=e&gclid=Cj0KCQjwv-DaBRCcARIsAI9sba-Z4bSus8H1OLgcy00PYfl2mklk7LH7HVy4XgEFAtrrcgvWjUnYDVIaAhszEALw_wcB" target="_blank">Audible</a></p><p><a href="https://www.trutv.com/shows/adam-ruins-everything/index.html" target="_blank">Adam Ruins Everything</a></p><p><a href="https://www.uniqlo.com/us/en/women/bras-and-underwear?gclid=Cj0KCQjwv-DaBRCcARIsAI9sba-T01wAPO1RFd1L1Dd2TK7qqTM2_HwngN5PblI8N5Ipbw7CxZ0Sc00aAmdsEALw_wcB" target="_blank">Uniqlo Bras</a> and <a href="https://www.uniqlo.com/us/en/women/bra-tops" target="_blank">Bra Tops</a></p><p><a href="https://guthyjacksonfoundation.org/" target="_blank">Victoria Jackson</a></p><p><strong>Favorite Podcasts </strong></p><p><a href="http://sickboypodcast.com/" target="_blank">SickBoy</a></p><p><a href="https://www.missedinhistory.com/podcasts" target="_blank">Stuff You Missed in History Class</a></p><p><a href="https://www.lorepodcast.com/" target="_blank">Lore</a></p><p><a href="http://podcasts.joerogan.net/" target="_blank">Joe Rogan</a></p><p><a href="http://dealwithitshow.com/" target="_blank">Deal With It</a></p><p><a href="https://www.mythpodcast.com/" target="_blank">Myths and History</a></p><p><br></p><p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652" target="_blank">Neuromyelitis optica,</a> <a href="https://www.nimh.nih.gov/health/topics/depression/index.shtml" target="_blank">depression</a>, <a href="https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease" target="_blank">adrenal insufficiency</a>. Nmo is similar to MS</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>4</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>A funny sarcastic independent little girl</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would’ve been finishing high school</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Everything is exhausting.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Better options to help relieve symptoms</p><p><strong>Do you have any life hacks? *</strong></p><p>Yes! 1. water bottles 2. towels dressing gown 3. homeschooling</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>I can’t remember an example. But people are always very impressed thanks blind because I manage well</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.</p><p><strong>What is your best coping mechanism? *</strong></p><p>PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.</p><p><strong>What is your favorite swear word?</strong></p><p>Shit<br></p><p><strong>Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.</strong></p><p>How this affects my mental health, and of course my work as a patient advocate.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My heated blanket! It’s like a full body heating pad. Only about £25 amazon.<br></p><p><br></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b5909e2f950b7844b1b4e17/1532562155799/NMO-chronic-fatigue-homeschool-chronic-pain-life-as-a-teen-spoonie-chronic-illness-podcast.mp3" length="88811229" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b5909e2f950b7844b1b4e17/1532562155799/NMO-chronic-fatigue-homeschool-chronic-pain-life-as-a-teen-spoonie-chronic-illness-podcast.mp3" length="88811229" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain</media:title></media:content></item><item><title>Part 2 Ehlers Danlos Pirate Service Dog CDIF CRPS Part 2 {A chronic illness podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Tue, 31 Jul 2018 04:27:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/6/27/ehlers-danlos-pirate-service-dog-cdif-crps-xt928</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b5b9c5c575d1fa8d6fd679f</guid><description>I admit it I ADORE her and her dog Sirius (How can you not love a pirate | |
| service dog named for Harry Potter character Sirius Black?) We had a long | |
| talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog | |
| etiquette. Service dogs behaving badly can be a huge danger for disabled | |
| people dealing with chronic pain and chronic illness. Enjoy this week and | |
| tune in next week for part 2.</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5b5ba84488251bab88538d64/5b5ba845aa4a99bb7146ae39/1532733774467/Pirate-Service-Dog-Ehlers-danlos-CRPS-chronic-illness-podcast+-+7%3A27%3A18%2C+3.19+PM.jpg" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" alt="Sirius Black Pirate Service Dog, Wheelchair Life, Ehlers Danlos, CRPS A Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5b5ba84488251bab88538d64/5b5ba845aa4a99bb7146ae39/1532733774467/Pirate-Service-Dog-Ehlers-danlos-CRPS-chronic-illness-podcast+-+7%3A27%3A18%2C+3.19+PM.jpg?format=1000w" /><br> | |
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| <hr /><h1 class="text-align-center">Follow Desiree </h1><h2 class="text-align-center">Instagram Follow</h2><h2 class="text-align-center">Sirius <a target="_blank" href="https://www.instagram.com/sirius.service.dog/">@sirius.service.dog</a></h2><h2 class="text-align-center">Desiree <a target="_blank" href="https://www.instagram.com/desireejaykins/">@desireejaykins</a></h2><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151">Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlo’s Syndrome</a>, other GI issues</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>19</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A runner, softball player, and marching band lover who had to give that all up.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Pain management and understanding of my condition as a whole.</p><p><strong>Do you have any life hacks? </strong>*</p><p>Almond milk helps a sour stomach lol</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out?</strong> *</p><p>Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>It has destroyed them and ruined my mental state.</p><p><strong>Is there anything you are afraid to tell people in your life? </strong>*</p><p>I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>No, it makes them more understanding once I got my diagnoses and how to treat me.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Sharing myself with others.</p><p><strong>What are you the most concerned about and the hopeful for in the future?</strong> *</p><p>Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.</p><p><strong>What is your favorite swear word?</strong></p><p>FAQQQQQ(fuck) in all varieties haha</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I need to learn self-love and self-coping mechanisms</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My yellow heavy duty<a target="_blank" href="https://www.amazon.com/Prairie-View-Industries-SFW330-Singlefold/dp/B0009QWAQ2/ref=sr_1_3_a_it?ie=UTF8&qid=1531684233&sr=8-3&keywords=portable+wheelchair+ramp"> portable wheelchair ramp</a> haha</p>]]></content:encoded><itunes:author>Monica Michelle</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b5b9c5c575d1fa8d6fd679f/1533011230000/1500w/Pirate-Service-Dog-Ehlers-danlos-CRPS-chronic-illness-podcast+-+7%3A27%3A18%2C+3.19+PM.jpg"/><itunes:title>Ehlers Danlos CRPS and a Pirate Service Dog</itunes:title><content:encoded><![CDATA[<p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151" target="_blank">Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome</a>, <a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125" target="_blank">Ehlers Danlo’s Syndrome</a>, other GI issues</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>19</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A runner, softball player, and marching band lover who had to give that all up.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Pain management and understanding of my condition as a whole.</p><p><strong>Do you have any life hacks? </strong>*</p><p>Almond milk helps a sour stomach lol</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out?</strong> *</p><p>Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>It has destroyed them and ruined my mental state.</p><p><strong>Is there anything you are afraid to tell people in your life? </strong>*</p><p>I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>No, it makes them more understanding once I got my diagnoses and how to treat me.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Sharing myself with others.</p><p><strong>What are you the most concerned about and the hopeful for in the future?</strong> *</p><p>Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.</p><p><strong>What is your favorite swear word?</strong></p><p>FAQQQQQ(fuck) in all varieties haha<br></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I need to learn self-love and self-coping mechanisms</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My yellow heavy duty<a href="https://www.amazon.com/Prairie-View-Industries-SFW330-Singlefold/dp/B0009QWAQ2/ref=sr_1_3_a_it?ie=UTF8&qid=1531684233&sr=8-3&keywords=portable+wheelchair+ramp" target="_blank"> portable wheelchair ramp</a> haha</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b5b9c88562fa73ce919d2cd/1532730781255/Pirate-Service-Dog-Ehlers-danlos-CRPS-chronic-illness-podcast+-+7%3A27%3A18%2C+3.19+PM.mp3" length="91949684" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b5b9c88562fa73ce919d2cd/1532730781255/Pirate-Service-Dog-Ehlers-danlos-CRPS-chronic-illness-podcast+-+7%3A27%3A18%2C+3.19+PM.mp3" length="91949684" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Ehlers Danlos CRPS and a Pirate Service Dog</media:title></media:content></item><item><title>30 Day in the Spoonie Life Video Challenge From Your Chronic Illness Podcast Invisible Not Broken</title><category>Random Musings From Bed</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 23 Jul 2018 19:10:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/7/23/30-day-spoonie-day-in-the-life-video-challenge-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b55f6b1758d46c198b6f692</guid><description>30 Day in the Spoonie Life Video Challenge From Your Chronic Illness | |
| Podcast Invisible Not Broken</description><content:encoded><![CDATA[<h1 class="text-align-center"><strong>#30dayspooniechallenge. </strong></h1> | |
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| <h2> So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like. Just add a not or say where you are from.</h2><p>We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!</p><p>I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.</p><p>So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us <strong>@invisiblenotbr</strong>k And don’t forget to <strong>#30dayspooniechallenge</strong> and make sure you <strong>share this with the friends</strong> get everyone in on it.</p><p>Don’t forget to hit that <strong>subscribe</strong> button and make sure you share us with your friends family support groups Facebook groups we really need your help!</p><ul><li class="text-align-center"><h2>What I am using</h2></li><li><a target="_blank" href="https://spark.adobe.com/about/video?mv=search&s_kwcid=AL!3085!3!282648240169!b!!g!!adobe%20spark%20video&ef_id=Uz8IIQAABDKadWtf:20180723172650:s">Adobe Spark Video APP</a></li><li><a target="_blank" href="#">IPhone</a><a target="_blank" href="#"> 7 Plus </a>(Getting desperate to switch to <a target="_blank" href="https://store.google.com/us/product/pixel_2?utm_source=en-ha-na-sem&utm_medium=text&utm_term=USsale&ds_kid=43700029560654297&utm_content=bkws&utm_campaign=Pixel&gclid=CjwKCAjw-dXaBRAEEiwAbwCi5uPIjO6xScvwPFsHlffNwpegmz3j8m5FTvl8ShFnKX_F5Qr8aLmr4xoCcPIQAvD_BwE&gclsrc=aw.ds&dclid=CMrSpITftdwCFQnAZAodkJcPIQ">Google </a><a target="_blank" href="https://store.google.com/us/product/pixel_2?utm_source=en-ha-na-sem&utm_medium=text&utm_term=USsale&ds_kid=43700029560654297&utm_content=bkws&utm_campaign=Pixel&gclid=CjwKCAjw-dXaBRAEEiwAbwCi5uPIjO6xScvwPFsHlffNwpegmz3j8m5FTvl8ShFnKX_F5Qr8aLmr4xoCcPIQAvD_BwE&gclsrc=aw.ds&dclid=CMrSpITftdwCFQnAZAodkJcPIQ">Pixl</a><a target="_blank" href="https://store.google.com/us/product/pixel_2?utm_source=en-ha-na-sem&utm_medium=text&utm_term=USsale&ds_kid=43700029560654297&utm_content=bkws&utm_campaign=Pixel&gclid=CjwKCAjw-dXaBRAEEiwAbwCi5uPIjO6xScvwPFsHlffNwpegmz3j8m5FTvl8ShFnKX_F5Qr8aLmr4xoCcPIQAvD_BwE&gclsrc=aw.ds&dclid=CMrSpITftdwCFQnAZAodkJcPIQ">)</a></li><li>Relentless and my children would say annoying optimism</li></ul>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary> So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like. | |
| We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica! | |
| I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast. | |
| So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us @invisiblenotbrk And don’t forget to #30dayspooniechallenge and make sure you share this with the friends get everyone in on it. | |
| Don’t forget to hit that subscribe button and make sure you share us with your friends family support groups Facebook groups we really need your help! | |
| What I am using | |
| Adobe Spark Video APP | |
| IPhone 7 Plus (Getting desperate to switch to Google Pixl) | |
| Relentless and my children would say annoying optimism</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>3:30</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b55f6b1758d46c198b6f692/1532373052813/1500w/30-day-spoonie-day-in-the-life-video-challenge-chronic-illness-podcast.jpg"/><itunes:title>30 Day in the Spoonie Life Video Challenge From Your Chronic Illness Podcast Invisible Not Broken</itunes:title><content:encoded><![CDATA[<p>So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like.</p><p>We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!</p><p>I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.</p><p>So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us <strong>@invisiblenotbr</strong>k And don’t forget to <strong>#30dayspooniechallenge</strong> and make sure you <strong>share this with the friends</strong> get everyone in on it.</p><p>Don’t forget to hit that <strong>subscribe</strong> button and make sure you share us with your friends family support groups Facebook groups we really need your help!</p><p>What I am using</p><p><a href="https://spark.adobe.com/about/video?mv=search&s_kwcid=AL!3085!3!282648240169!b!!g!!adobe%20spark%20video&ef_id=Uz8IIQAABDKadWtf:20180723172650:s" target="_blank">Adobe Spark Video APP</a></p><p><a href="#" target="_blank">IPhone 7 Plus </a>(Getting desperate to switch to <a href="https://store.google.com/us/product/pixel_2?utm_source=en-ha-na-sem&utm_medium=text&utm_term=USsale&ds_kid=43700029560654297&utm_content=bkws&utm_campaign=Pixel&gclid=CjwKCAjw-dXaBRAEEiwAbwCi5uPIjO6xScvwPFsHlffNwpegmz3j8m5FTvl8ShFnKX_F5Qr8aLmr4xoCcPIQAvD_BwE&gclsrc=aw.ds&dclid=CMrSpITftdwCFQnAZAodkJcPIQ" target="_blank">Google Pixl)</a></p><p>Relentless and my children would say annoying optimism</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b561163352f53ff661b5e93/1532367213646/30-day-spoonie-video-challenge-chronic-illness-podcast.mp3" length="4496740" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b561163352f53ff661b5e93/1532367213646/30-day-spoonie-video-challenge-chronic-illness-podcast.mp3" length="4496740" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">30 Day in the Spoonie Life Video Challenge From Your Chronic Illness Podcast Invisible Not Broken</media:title></media:content></item><item><title>Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 16 Jul 2018 12:56:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/6/27/ehlers-danlos-pirate-service-dog-cdif-crps</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b3432422b6a28b9ba3ed50f</guid><description>I admit it I ADORE her and her dog Sirius (How can you not love a pirate | |
| service dog named for Harry Potter character Sirius Black?) We had a long | |
| talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog | |
| etiquette. Service dogs behaving badly can be a huge danger for disabled | |
| people dealing with chronic pain and chronic illness. Enjoy this week and | |
| tune in next week for part 2.</description><content:encoded><![CDATA[<img class="thumb-image" alt="ehlers-danlos-crps-service-dog-wheelchair-chronic-illness-blog.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b4ba79a03ce6433031906fb/1532730460723/ehlers-danlos-crps-service-dog-wheelchair-chronic-illness-blog.jpg" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5b4ba79a03ce6433031906fb" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b4ba79a03ce6433031906fb/1532730460723/ehlers-danlos-crps-service-dog-wheelchair-chronic-illness-blog.jpg?format=1000w" /> | |
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| <hr /><h1 class="text-align-center">Follow Desiree </h1><h2 dir="ltr" class="text-align-center">Instagram Follow</h2><h2 dir="ltr" class="text-align-center">Sirius <a target="_blank" href="https://www.instagram.com/sirius.service.dog/">@sirius.service.dog</a></h2><h2 dir="ltr" class="text-align-center">Desiree <a target="_blank" href="https://www.instagram.com/desireejaykins/">@desireejaykins</a></h2><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151">Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlo’s Syndrome</a>, other GI issues</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>19</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A runner, softball player, and marching band lover who had to give that all up.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Pain management and understanding of my condition as a whole.</p><p><strong>Do you have any life hacks? </strong>*</p><p>Almond milk helps a sour stomach lol</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out?</strong> *</p><p>Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>It has destroyed them and ruined my mental state.</p><p><strong>Is there anything you are afraid to tell people in your life? </strong>*</p><p>I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>No, it makes them more understanding once I got my diagnoses and how to treat me.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Sharing myself with others.</p><p><strong>What are you the most concerned about and the hopeful for in the future?</strong> *</p><p>Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.</p><p><strong>What is your favorite swear word?</strong></p><p>FAQQQQQ(fuck) in all varieties haha</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I need to learn self-love and self-coping mechanisms</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My yellow heavy duty<a target="_blank" href="https://www.amazon.com/Prairie-View-Industries-SFW330-Singlefold/dp/B0009QWAQ2/ref=sr_1_3_a_it?ie=UTF8&qid=1531684233&sr=8-3&keywords=portable+wheelchair+ramp"> portable wheelchair ramp</a> haha</p>]]></content:encoded><itunes:author>Monica Michelle</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b3432422b6a28b9ba3ed50f/1532733110666/1500w/IMG_0257.jpg"/><itunes:title>Ehlers Danlos CRPS and a Pirate Service Dog</itunes:title><content:encoded><![CDATA[<p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151" target="_blank">Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome</a>, <a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125" target="_blank">Ehlers Danlo’s Syndrome</a>, other GI issues</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>19</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A runner, softball player, and marching band lover who had to give that all up.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Pain management and understanding of my condition as a whole.</p><p><strong>Do you have any life hacks? </strong>*</p><p>Almond milk helps a sour stomach lol</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out?</strong> *</p><p>Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>It has destroyed them and ruined my mental state.</p><p><strong>Is there anything you are afraid to tell people in your life? </strong>*</p><p>I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>No, it makes them more understanding once I got my diagnoses and how to treat me.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Sharing myself with others.</p><p><strong>What are you the most concerned about and the hopeful for in the future?</strong> *</p><p>Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.</p><p><strong>What is your favorite swear word?</strong></p><p>FAQQQQQ(fuck) in all varieties haha<br></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I need to learn self-love and self-coping mechanisms</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My yellow heavy duty<a href="https://www.amazon.com/Prairie-View-Industries-SFW330-Singlefold/dp/B0009QWAQ2/ref=sr_1_3_a_it?ie=UTF8&qid=1531684233&sr=8-3&keywords=portable+wheelchair+ramp" target="_blank"> portable wheelchair ramp</a> haha</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b34325b6d2a7317ca0b746f/1532730460726/Ehlers+Danlos+Pirate+Service+Dog+CDIF+CRPS.mp3" length="98369537" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b34325b6d2a7317ca0b746f/1532730460726/Ehlers+Danlos+Pirate+Service+Dog+CDIF+CRPS.mp3" length="98369537" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Ehlers Danlos CRPS and a Pirate Service Dog</media:title></media:content></item><item><title>Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 09 Jul 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/6/20/travel-and-disability-tips-tricks-for-roadtrips-planes-and-family-reunions-when-you-have-a-chronic-illness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b2b2ab10e2e72f37d56485d</guid><description>Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family | |
| Reunions When You Have A Chronic Illness…click to read more or to listen to | |
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| <p> </p><h1 class="text-align-center"><strong>Before you travel</strong></h1><ol><li><p><strong>Make sure you have more than enough meds to get you through the trip. (My rule of thumb is to always make sure I have enough for 3-5 extra days in case I get stuck somewhere due to weather or other problems)</strong></p></li><li><p><strong>If you use a daily pill sorter, </strong></p><ol><li><p><strong>Take it empty along with your bottles of pills</strong></p></li><li><p><strong>Fill it but take pictures of each pill next to its bottle in case you need to show someone what the pills are for. (I have traveled all over the world and never had a problem taking my pills in a pill sorter. </strong></p></li></ol></li><li><p><strong>Always keep your pills on your person, never put them in checked luggage!</strong></p></li><li><p><strong>Make sure that you inform your travel provider of any accommodations you need WHEN you purchase your tickets</strong></p><ol><li><p><strong>Dietary restrictions</strong></p></li><li><p><strong>Assistance needed with transport</strong></p></li><li><p><strong>Transportation of assistive devices (Wheelchairs, etc)</strong></p></li></ol></li><li><p><strong>You will probably be sitting still for a long time, make sure you plan accordingly</strong></p><ol><li><p><strong>Warm socks</strong></p></li><li><p><strong>Sweats</strong></p></li><li><p><strong>Compression socks</strong></p></li><li><p><strong>Wear comfortable clothes</strong></p></li></ol></li><li><p><strong>Find out about resources near where you are staying for things like dialysis, oxygen rental, wheelchair rental, etc.</strong></p></li><li><p><strong>If you have a condition that could impact your ability to travel, getting <a href="https://www.washingtonpost.com/lifestyle/travel/travel-insurance-faq-buying-a-policy-filing-claims-and-more/2012/05/17/gIQAn2XSYU_print.html">travel insurance</a> might be a good idea.</strong></p></li><li><p><strong>If you have a layover, there is an app, Gate Guru, that can show you the layout of various airports so you can plan food/resting if you have the time.</strong></p></li><li><p><strong>Don’t be afraid to schedule in days to rest and recover. I know you want to see everything, but you’ll enjoy your trip more if you give yourself a break every so often. *Knowing I have a day to recover allows me to occasionally push myself to do something I otherwise would be too nervous to attempt.* </strong></p></li><li><p><strong>Investigate physician availability where you will be traveling. Your doctor, health care provider, insurance company or local embassy can provide the names and contact numbers of physicians at your destination. For more information, see <a href="http://www.independenttraveler.com/travel-tips/safety-and-health/health-care-abroad">Health Care Abroad</a>.</strong></p></li><li><p><strong>Bring <a href="http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1313&_nkw=spare%20parts">spare parts</a> and tools. Wheelchairs can take tremendous abuse while traveling; assemble a small kit of <a href="http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1313&_nkw=spare%20parts">spare parts</a> and tools for emergency repairs. You may also be required to dismantle a wheelchair for certain flights or activities; make sure you and your traveling companions know how to do this.</strong></p></li><li><p><strong>Research, Research, Research (your destination, the airline, etc)</strong></p></li></ol><p> </p><h1><strong>Getting there (Airplanes / Trains / Cars) and home</strong></h1><ol><li><p><strong>All means of transport</strong></p><ol><li><p><strong>Noise canceling headphones</strong></p></li><li><p><strong>Comfortable clothes</strong></p></li><li><p><strong>Shoes that are easy to take off / put back on</strong></p></li><li><p><strong>Back up batteries and power cables for electronics</strong></p></li></ol></li><li><p><strong>Cars</strong></p><ol><li><p><strong>Pillows - so you can sleep/get comfortable</strong></p></li></ol></li></ol><p> </p><ol><li><p><strong>Trains</strong></p><ol><li><p><strong>Earplugs (Trains can be very noisy)</strong></p></li></ol></li></ol><p> </p><ol><li><p><strong>Planes</strong></p><ol><li><p><strong>A light jacket as the temperature can vary greatly.</strong></p></li><li><p><strong>Snacks / Bottled water </strong></p></li><li><p><strong>Travel neck pillow</strong></p></li></ol></li></ol><p> </p><h1><strong>Arriving at your destination</strong></h1><ol><li><p><strong>Don’t be afraid to ask for assistance getting from wherever you are dropped (airline gate, train platform) to the exit. The worst they can do is say no, and it might just save you a lot of pain.</strong></p></li><li><p><strong>Most airports have people whose only job is to push people around in wheelchairs (even people who can walk, but can’t walk long distances). Request them if you even think you’ll need it. </strong></p><ol><li><p><strong>*I didn’t think I would and almost turned it down once. I underestimated how far the walk was and if I had turned them down, would not have been able to get through security*</strong></p></li></ol></li><li><p><strong>If you have any kind of food allergies, plan ahead to have your own food until you reach your final destination as you cannot guarantee that there will be something safe along the way.</strong></p><ol><li><p><strong>I knew a particular airport had a place that was safe for me, and when I arrived, it was closed and under construction. I was very hungry by the time I got where I was going.</strong></p></li></ol></li></ol><p> </p><h1><strong>Dealing with Friends and Family - </strong></h1><ol><li><p><strong>Friends and family are complicated. They have known you a long time and may not realize all the things you have to deal with and may be clueless about things you need for accomodation.</strong></p></li><li><p><strong>Make sure if you are staying with friends or family that they know ahead of time any issues you might have. (They may expect to put you up on an air mattress, but you can’t get up from that close to the floor. Or they might not have any food that is safe for you.)</strong></p></li><li><p><strong>Plan ahead in case they forget something that is going to affect you adversely</strong></p><ol><li><p><strong>Try to head off any potential problems by mentioning specific things you are worried about.</strong></p></li><li><p><strong>If possible, plan alternatives in case they are unable to accomodate you. (For example, having already researched nearby hotels or places to get food)</strong></p></li></ol></li><li><p><strong>You may be the only person with a disability that they know, so be mentally prepared to play the role of educator.</strong></p></li><li><p><strong>If friends and family are too complicated be up front or hell lie. Get a hotel room. A place to hide and runaway can save you jail time later.</strong></p></li></ol><p> </p><h1><strong>Traveling to another country</strong></h1><ol><li><p><strong>If you are travelling to a country with a different language than your own and need accommodations of any type, use Google Translate to compose phrases that you will most need to say. </strong></p><ol><li><p><strong>This might not be perfect, but it will at least allow you to get your point across in a pinch. </strong></p><ol><li><p><strong>I use this for my dairy allergy. I made up little cards with an explanation that I cannot have dairy (including examples) in the native language. I carry them with me everywhere. If I am going out to eat, I show the card to the server so they can help guide me to food that is safe for me. </strong></p></li></ol></li><li><p><strong>The EU mandates that restaurants carry “food allergen” menus for all their items so that people can make informed decisions.</strong></p></li></ol></li><li><p><strong>There are several good resources for disabled travel in other countries. Look up the country you plan to visit and see what other people found easy or difficult. I’ve found quite a few things that I would have rejected outright, but reading other people’s stories made me realize that it wasn’t as bad as I imagined.</strong></p><ol><li><p><strong><a href="http://sath.org/disability-travel-websites">http://sath.org/disability-travel-websites</a></strong></p></li><li><p><strong><a href="https://www.mobility-advisor.com/disabled-friendly-travel.html">https://www.mobility-advisor.com/disabled-friendly-travel.html</a></strong></p></li><li><p><strong><a href="https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on">https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on</a></strong></p></li><li><p><strong><a href="http://www.accessiblejourneys.com/accessible-travel-resources.htm">http://www.accessiblejourneys.com/accessible-travel-resources.htm</a></strong></p></li><li><p><strong><a href="https://www.smartertravel.com/2017/06/19/disabled-travel/">https://www.smartertravel.com/2017/06/19/disabled-travel/</a></strong></p></li><li><p><strong><a href="http://www.travelguides.org/travelresources.html">http://www.travelguides.org/travelresources.html</a></strong></p></li><li><p><strong><a href="http://www.executiveclasstravelers.com/1/travel_resources.htm">http://www.executiveclasstravelers.com/1/travel_resources.htm</a></strong></p></li><li><p><strong><a href="http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/">http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/</a></strong></p></li><li><p><strong><a href="https://www.makoa.org/travel.htm">https://www.makoa.org/travel.htm</a></strong></p></li><li><p><strong><a href="https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/">https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/</a></strong></p></li><li><p><strong><a href="http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE">http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE</a></strong></p></li></ol></li></ol>]]></content:encoded><itunes:author>invisible not broken</itunes:author><itunes:subtitle>Chronic Illness Podcast</itunes:subtitle><itunes:summary>Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>54:06</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b2b2ab10e2e72f37d56485d/1531143009885/1500w/Travel-and-Disability-Roadtrips-Family-and+Summer-Travel-With-Chronic-Illness-an-Invisible-Illness-Podcast.jpg"/><itunes:title>Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness</itunes:title><content:encoded><![CDATA[<p>Recomendations</p><p><a href="http://sath.org/disability-travel-websites"><strong>http://sath.org/disability-travel-websites</strong></a></p><p><a href="https://www.mobility-advisor.com/disabled-friendly-travel.html"><strong>https://www.mobility-advisor.com/disabled-friendly-travel.html</strong></a></p><p><a href="https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on"><strong>https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on</strong></a></p><p><a href="http://www.accessiblejourneys.com/accessible-travel-resources.htm"><strong>http://www.accessiblejourneys.com/accessible-travel-resources.htm</strong></a></p><p><a href="https://www.smartertravel.com/2017/06/19/disabled-travel/"><strong>https://www.smartertravel.com/2017/06/19/disabled-travel/</strong></a></p><p><a href="http://www.travelguides.org/travelresources.html"><strong>http://www.travelguides.org/travelresources.html</strong></a></p><p><a href="http://www.executiveclasstravelers.com/1/travel_resources.htm"><strong>http://www.executiveclasstravelers.com/1/travel_resources.htm</strong></a></p><p><a href="http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/"><strong>http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/</strong></a></p><p><a href="https://www.makoa.org/travel.htm"><strong>https://www.makoa.org/travel.htm</strong></a></p><p><a href="https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/"><strong>https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/</strong></a></p><p><a href="http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE"><strong>http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE</strong></a></p><p></p><p>Before you travel</p><p><strong>Make sure you have more than enough meds to get you through the trip. (My rule of thumb is to always make sure I have enough for 3-5 extra days in case I get stuck somewhere due to weather or other problems)</strong></p><p><strong>If you use a daily pill sorter,</strong></p><p><strong>Take it empty along with your bottles of pills</strong></p><p><strong>Fill it but take pictures of each pill next to its bottle in case you need to show someone what the pills are for. (I have traveled all over the world and never had a problem taking my pills in a pill sorter.</strong></p><p><strong>Always keep your pills on your person, never put them in checked luggage!</strong></p><p><strong>Make sure that you inform your travel provider of any accommodations you need WHEN you purchase your tickets</strong></p><p><strong>Dietary restrictions</strong></p><p><strong>Assistance needed with transport</strong></p><p><strong>Transportation of assistive devices (Wheelchairs, etc)</strong></p><p><strong>You will probably be sitting still for a long time, make sure you plan accordingly</strong></p><p><strong>Warm socks</strong></p><p><strong>Sweats</strong></p><p><strong>Compression socks</strong></p><p><strong>Wear comfortable clothes</strong></p><p><strong>Find out about resources near where you are staying for things like dialysis, oxygen rental, wheelchair rental, etc.</strong></p><p><strong>If you have a condition that could impact your ability to travel, getting </strong><a href="https://www.washingtonpost.com/lifestyle/travel/travel-insurance-faq-buying-a-policy-filing-claims-and-more/2012/05/17/gIQAn2XSYU_print.html"><strong>travel insurance</strong></a><strong> might be a good idea.</strong></p><p><strong>If you have a layover, there is an app, Gate Guru, that can show you the layout of various airports so you can plan food/resting if you have the time.</strong></p><p><strong>Don’t be afraid to schedule in days to rest and recover. I know you want to see everything, but you’ll enjoy your trip more if you give yourself a break every so often. *Knowing I have a day to recover allows me to occasionally push myself to do something I otherwise would be too nervous to attempt.*</strong></p><p><strong>Investigate physician availability where you will be traveling. Your doctor, health care provider, insurance company or local embassy can provide the names and contact numbers of physicians at your destination. For more information, see </strong><a href="http://www.independenttraveler.com/travel-tips/safety-and-health/health-care-abroad"><strong>Health Care Abroad</strong></a><strong>.</strong></p><p><strong>Bring </strong><a href="http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1313&_nkw=spare%20parts"><strong>spare parts</strong></a><strong> and tools. Wheelchairs can take tremendous abuse while traveling; assemble a small kit of </strong><a href="http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1313&_nkw=spare%20parts"><strong>spare parts</strong></a><strong> and tools for emergency repairs. You may also be required to dismantle a wheelchair for certain flights or activities; make sure you and your traveling companions know how to do this.</strong></p><p><strong>Research, Research, Research (your destination, the airline, etc)</strong></p><p><br></p><p>Getting there (Airplanes / Trains / Cars) and home</p><p><strong>All means of transport</strong></p><p><strong>Noise canceling headphones</strong></p><p><strong>Comfortable clothes</strong></p><p><strong>Shoes that are easy to take off / put back on</strong></p><p><strong>Back up batteries and power cables for electronics</strong></p><p><strong>Cars</strong></p><p><strong>Pillows - so you can sleep/get comfortable</strong></p><p><br></p><p><strong>Trains</strong></p><p><strong>Earplugs (Trains can be very noisy)</strong></p><p><br></p><p><strong>Planes</strong></p><p><strong>A light jacket as the temperature can vary greatly.</strong></p><p><strong>Snacks / Bottled water</strong></p><p><strong>Travel neck pillow</strong></p><p><br></p><p>Arriving at your destination</p><p><strong>Don’t be afraid to ask for assistance getting from wherever you are dropped (airline gate, train platform) to the exit. The worst they can do is say no, and it might just save you a lot of pain.</strong></p><p><strong>Most airports have people whose only job is to push people around in wheelchairs (even people who can walk, but can’t walk long distances). Request them if you even think you’ll need it.</strong></p><p><strong>*I didn’t think I would and almost turned it down once. I underestimated how far the walk was and if I had turned them down, would not have been able to get through security*</strong></p><p><strong>If you have any kind of food allergies, plan ahead to have your own food until you reach your final destination as you cannot guarantee that there will be something safe along the way.</strong></p><p><strong>I knew a particular airport had a place that was safe for me, and when I arrived, it was closed and under construction. I was very hungry by the time I got where I was going.</strong></p><p><br></p><p>Dealing with Friends and Family -</p><p><strong>Friends and family are complicated. They have known you a long time and may not realize all the things you have to deal with and maybe clueless about things you need for accommodation.</strong></p><p><strong>Make sure if you are staying with friends or family that they know ahead of time any issues you might have. (They may expect to put you up on an air mattress, but you can’t get up from that close to the floor. Or they might not have any food that is safe for you.)</strong></p><p><strong>Plan ahead in case they forget something that is going to affect you adversely</strong></p><p><strong>Try to head off any potential problems by mentioning specific things you are worried about.</strong></p><p><strong>If possible, plan alternatives in case they are unable to accommodate you. (For example, having already researched nearby hotels or places to get food)</strong></p><p><strong>You may be the only person with a disability that they know, so be mentally prepared to play the role of educator.</strong></p><p><strong>If friends and family are too complicated to be up front or hell lie. Get a hotel room. A place to hide and runaway can save you jail time later.</strong></p><p><br></p><p>Traveling to another country</p><p><strong>If you are traveling to a country with a different language than your own and need accommodations of any type, use Google Translate to compose phrases that you will most need to say.</strong></p><p><strong>This might not be perfect, but it will at least allow you to get your point across in a pinch.</strong></p><p><strong>I use this for my dairy allergy. I made up little cards with an explanation that I cannot have dairy (including examples) in the native language. I carry them with me everywhere. If I am going out to eat, I show the card to the server so they can help guide me to food that is safe for me.</strong></p><p><strong>The EU mandates that restaurants carry “food allergen” menus for all their items so that people can make informed decisions.</strong></p><p><strong>There are several good resources for disabled travel in other countries. Look up the country you plan to visit and see what other people found easy or difficult. I’ve found quite a few things that I would have rejected outright, but reading other people’s stories made me realize that it wasn’t as bad as I imagined.</strong></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b2aec352f53bf9a176b12/1529555911900/travel+and+disability.mp3" length="77856676" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b2aec352f53bf9a176b12/1529555911900/travel+and+disability.mp3" length="77856676" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness</media:title></media:content></item><item><title>Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog</title><category>Random Musings From Bed</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 02 Jul 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/opioid-chronic-pain-experiment-chronic-illness-blog</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b2b28078a922df7933cc856</guid><description>Alright maybe I have listened to too many Tim Ferris Podcast episodes (no | |
| really super motivating. Give it a try if you haven't). I decided to run a | |
| personal experiment as the US has yet again made it more difficult to get | |
| pain medication even when you go to a PAIN CLINIC…click about to read more | |
| on a chronic pain patients personal experiment in pain management without | |
| opioids. Warning this is not pretty, cute, or fun. If suffering makes you | |
| uncomfortable well please watch and then call your congress person and VOTE</description><content:encoded><![CDATA[<img class="thumb-image" alt="pain-management-experiment-going-without-my-pain-meds-opioids-ehlers-danlos-fibromyalgia.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b2a06f950b7ec24475bf6/1529555492273/pain-management-experiment-going-without-my-pain-meds-opioids-ehlers-danlos-fibromyalgia.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5b2b2a06f950b7ec24475bf6" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b2a06f950b7ec24475bf6/1529555492273/pain-management-experiment-going-without-my-pain-meds-opioids-ehlers-danlos-fibromyalgia.jpg?format=1000w" /> | |
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| <p>Alright maybe I have listened to too many <a target="_blank" href="https://tim.blog/podcast/">Tim Ferris Podcast</a> episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.</p><p>Right now<a target="_blank" href="https://www.painnewsnetwork.org/stories/2017/9/28/cvs-defends-rx-opioid-policy"> CVS </a>which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.</p><p>So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.</p><p>Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.) </p><p>I REALLY thought I could make it the entire day. What else are super high pain thresholds for?</p><p>SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.</p><p>It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.</p><p>For the record, I have <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a>, <a target="_blank" href="https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots">POTS</a>, and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">Fibromyalgia</a></p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Invisible Illness Podcast</itunes:subtitle><itunes:summary>Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors and how much and when you may have your medicine. For the record, I have Ehlers Danlos, POTS, and Fibromyalgia</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>15:20</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b2b28078a922df7933cc856/1530939640903/1500w/opioid-chronic-pain-experiment-chronic-illness-blog.jpg"/><itunes:title>Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog</itunes:title><content:encoded><![CDATA[<p>Alright maybe I have listened to too many <a href="https://tim.blog/podcast/" target="_blank">Tim Ferris Podcast</a> episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.</p><p>Right now<a href="https://www.painnewsnetwork.org/stories/2017/9/28/cvs-defends-rx-opioid-policy" target="_blank"> CVS </a>which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.</p><p>So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.</p><p>Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.)</p><p>I REALLY thought I could make it the entire day. What else are super high pain thresholds for?</p><p>SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.</p><p>It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.</p><p>For the record, I have <a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125" target="_blank">Ehlers Danlos</a>, <a href="https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots" target="_blank">POTS</a>, and <a href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780" target="_blank">Fibromyalgia</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b287ff950b7ec24472e04/1529555133732/pain-management-experiment-going-without-my-pain-meds-opioids-ehlers-danlos-fibromyalgia.mp3" length="22115600" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b2b287ff950b7ec24472e04/1529555133732/pain-management-experiment-going-without-my-pain-meds-opioids-ehlers-danlos-fibromyalgia.mp3" length="22115600" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog</media:title></media:content></item><item><title>Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 18 Jun 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/29/lymes-fibromyalgia-migraines-medication-and-non-binary-trans-talk-on-invisible-not-broke-nap4s</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b217c0c70a6addf5870485c</guid><description>First an apology on behalf of Skype on the frustrating audio! If any of you | |
| tech geniuses know another way to conduct interviews with everyone being | |
| able to see each other PLEASE reach out! Otherwise, I PROMISE you this | |
| interview is worth listening to even with the audio. Eliott has become one | |
| of my favorite people. I can not thank Eliott enough for VERY gently | |
| correcting my language to be more inclusive and for explaining trans and | |
| nonbinary in ways that I could really understand. Eliott also has some | |
| incredible coping issues for pain management which they learned from | |
| fibromyalgia, benign hyper-mobility, after effects of Lyme disease, | |
| depression, generalized anxiety. I hope you enjoy and please listen both | |
| weeks. This is our first 2 parter. </description><content:encoded><![CDATA[<img class="thumb-image" alt="Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b217c0c70a6addf58704857/1528921075266/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg" data-image-dimensions="314x480" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5b217c0c70a6addf58704857" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b217c0c70a6addf58704857/1528921075266/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg?format=1000w" /> | |
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| <h2>Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.</h2><h2>First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia</a>, <a target="_blank" href="http://jaoa.org/article.aspx?articleid=2093276">benign hyper-mobility</a>, after effects of<a target="_blank" href="https://www.lymedisease.org/lyme-disease-symptom-checklist/"> Lyme disease</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/depression/index.shtml">depression</a>, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. </h2><h1 class="text-align-center"><strong>Recommendations</strong></h1><blockquote><blockquote>Anyway, Here are some resources for the podcast notes!<p>-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (<a target="_blank" href="tel:+18775658860">+18775658860</a> US/ <a target="_blank" href="tel:+18773306366">+18773306366</a> CANADA/ <a target="_blank" href="https://www.translifeline.org/">https://www.translifeline.org/</a>)</p><p>-A basic definition & concept breakdown: <a target="_blank" href="http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/">http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/</a></p><p>-An article about understanding genderqueer, a term like nonbinary <a target="_blank" href="https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/">https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/</a></p><p>-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment</p><p>-<a target="_blank" href="http://comingoutasnonbinary.tumblr.com/">comingoutasnonbinary.tumblr.com</a></p><p>-blog about chronic illness: chronicill on wordpress or <a target="_blank" href="http://chronc-ill.tumblr.com/">chronc-ill.tumblr.com</a></p><p>-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)</p><p>-nonbinary 101/meeting a nonbinary person: <a target="_blank" href="https://valprehension.com/genderqueer-101/">https://valprehension.com/genderqueer-101/</a></p><p>-an answer to common questions: </p><p><a target="_blank" href="https://everydayfeminism.com/2015/08/trans-questions-201/">https://everydayfeminism.com/2015/08/trans-questions-201/</a></p><p>-a video to explain the term nonbinary to kids:</p><p><a target="_blank" href="https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380">https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380</a></p><p>-a basic trans healthcare breakdown: <a target="_blank" href="https://www.healthline.com/health/transgender-friendly-healthcare-language#4">https://www.healthline.com/health/transgender-friendly-healthcare-language#4</a></p><p>-also a fellow podcast! How To Be a Girl</p><p>-a website with a lot of articles directed at parents of kids coming out as LGBTQ: <a target="_blank" href="http://mykidisgay.com/category/gender/">http://mykidisgay.com/category/gender/</a></p><p>-Chronically Fully Sick in Facebook</p><p>-post on They pronouns in grammar: <a target="_blank" href="https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/">https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/</a></p><p>-article about talking to a trans person etiquette:</p><p><a target="_blank" href="https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/">https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/</a></p><p>-PDFs of a book about gender:</p></blockquote><blockquote> <a target="_blank" href="https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html">https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html</a></blockquote></blockquote><p><strong>What is the best purchase under $100 that helped your life</strong></p><blockquote><blockquote><p>CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)</p><p>-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)</p><p>-Electric Heating pad (I got this a long time ago but I believe it was $20-30)</p></blockquote></blockquote><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia</a>, <a target="_blank" href="http://jaoa.org/article.aspx?articleid=2093276">benign hypermobility</a>, after effects of<a target="_blank" href="https://www.lymedisease.org/lyme-disease-symptom-checklist/"> Lyme disease</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/depression/index.shtml">depression</a>, generalized anxiety</p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>8</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>Same person I am now? Maybe more confident in my ability to do multiple things in a day.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.</p><p><strong>Do you have any life hacks? *</strong></p><p>Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>Yes</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>How much pain I’m actually in and how long it actually lasts</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.</p><p><strong>What is your best coping mechanism? *</strong></p><p>writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.</p><p> </p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>An Invisible Illness Podcast</itunes:subtitle><itunes:summary>First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>56:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b217c0c70a6addf5870485c/1529455973903/1500w/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg"/><itunes:title>Lymes, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2</itunes:title><content:encoded><![CDATA[<p> Here are some resources for the podcast notes!</p><p>-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (<a href="tel:+18775658860" target="_blank">+18775658860</a> US/ <a href="tel:+18773306366" target="_blank">+18773306366</a> CANADA/ <a href="https://www.translifeline.org/" target="_blank">https://www.translifeline.org/</a>)</p><p>-A basic definition & concept breakdown: <a href="http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/" target="_blank">http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/</a></p><p>-An article about understanding genderqueer, a term like nonbinary <a href="https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/" target="_blank">https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/</a></p><p>-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment</p><p>-<a href="http://comingoutasnonbinary.tumblr.com/" target="_blank">comingoutasnonbinary.tumblr.com</a></p><p>-blog about chronic illness: chronicill on wordpress or <a href="http://chronc-ill.tumblr.com/" target="_blank">chronc-ill.tumblr.com</a></p><p>-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)</p><p>-nonbinary 101/meeting a nonbinary person: <a href="https://valprehension.com/genderqueer-101/" target="_blank">https://valprehension.com/genderqueer-101/</a></p><p>-an answer to common questions:</p><p><a href="https://everydayfeminism.com/2015/08/trans-questions-201/" target="_blank">https://everydayfeminism.com/2015/08/trans-questions-201/</a></p><p>-a video to explain the term nonbinary to kids:</p><p><a href="https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380" target="_blank">https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380</a></p><p>-a basic trans healthcare breakdown: <a href="https://www.healthline.com/health/transgender-friendly-healthcare-language#4" target="_blank">https://www.healthline.com/health/transgender-friendly-healthcare-language#4</a></p><p>-also a fellow podcast! How To Be a Girl</p><p>-a website with a lot of articles directed at parents of kids coming out as LGBTQ: <a href="http://mykidisgay.com/category/gender/" target="_blank">http://mykidisgay.com/category/gender/</a></p><p>-Chronically Fully Sick in Facebook</p><p>-post on They pronouns in grammar: <a href="https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/" target="_blank">https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/</a></p><p>-article about talking to a trans person etiquette:</p><p><a href="https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/" target="_blank">https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/</a></p><p>-PDFs of a book about gender:</p><p><a href="http://www.thegenderbook.com/the-book/4553374748" target="_blank">http://www.thegenderbook.com/the-book/4553374748</a></p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)</p><p>-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)</p><p>-Electric Heating pad (I got this a long time ago but I believe it was $20-30)</p><p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780" target="_blank">fibromyalgia</a>, <a href="http://jaoa.org/article.aspx?articleid=2093276" target="_blank">benign hypermobility</a>, after effects of<a href="https://www.lymedisease.org/lyme-disease-symptom-checklist/" target="_blank"> Lyme disease</a>, <a href="https://www.nimh.nih.gov/health/topics/depression/index.shtml" target="_blank">depression</a>, generalized anxiety</p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>8</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>Same person I am now? Maybe more confident in my ability to do multiple things in a day.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.</p><p><strong>Do you have any life hacks? *</strong></p><p>Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>Yes</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>How much pain I’m actually in and how long it actually lasts</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.</p><p><strong>What is your best coping mechanism? *</strong></p><p>writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b21864a758d4630fa36020a/1528923898202/Eliott+Part+2.mp3" length="62356496" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b21864a758d4630fa36020a/1528923898202/Eliott+Part+2.mp3" length="62356496" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Lymes, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2</media:title></media:content></item><item><title>Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 11 Jun 2018 14:25:56 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/29/lymes-fibromyalgia-migraines-medication-and-non-binary-trans-talk-on-invisible-not-broke</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b0e030a352f5356912a1057</guid><description>First an apology on behalf of Skype on the frustrating audio! If any of you | |
| tech geniuses know another way to conduct interviews with everyone being | |
| able to see each other PLEASE reach out! Otherwise, I PROMISE you this | |
| interview is worth listening to even with the audio. Eliott has become one | |
| of my favorite people. I can not thank Eliott enough for VERY gently | |
| correcting my language to be more inclusive and for explaining trans and | |
| nonbinary in ways that I could really understand. Eliott also has some | |
| incredible coping issues for pain management which they learned from | |
| fibromyalgia, benign hyper-mobility, after effects of Lyme disease, | |
| depression, generalized anxiety. I hope you enjoy and please listen both | |
| weeks. This is our first 2 parter. </description><content:encoded><![CDATA[<img class="thumb-image" alt="Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b19677a2b6a28d4d3bb8175/1528921100114/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg" data-image-dimensions="314x480" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5b19677a2b6a28d4d3bb8175" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b19677a2b6a28d4d3bb8175/1528921100114/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg?format=1000w" /> | |
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| <h2>Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.</h2><h2>First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia</a>, <a target="_blank" href="http://jaoa.org/article.aspx?articleid=2093276">benign hyper-mobility</a>, after effects of<a target="_blank" href="https://www.lymedisease.org/lyme-disease-symptom-checklist/"> Lyme disease</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/depression/index.shtml">depression</a>, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. </h2><h1 class="text-align-center"><strong>Recommendations</strong></h1><blockquote><blockquote>Anyway, Here are some resources for the podcast notes!<p>-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (<a target="_blank" href="tel:+18775658860">+18775658860</a> US/ <a target="_blank" href="tel:+18773306366">+18773306366</a> CANADA/ <a target="_blank" href="https://www.translifeline.org/">https://www.translifeline.org/</a>)</p><p>-A basic definition & concept breakdown: <a target="_blank" href="http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/">http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/</a></p><p>-An article about understanding genderqueer, a term like nonbinary <a target="_blank" href="https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/">https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/</a></p><p>-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment</p><p>-<a target="_blank" href="http://comingoutasnonbinary.tumblr.com/">comingoutasnonbinary.tumblr.com</a></p><p>-blog about chronic illness: chronicill on wordpress or <a target="_blank" href="http://chronc-ill.tumblr.com/">chronc-ill.tumblr.com</a></p><p>-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)</p><p>-nonbinary 101/meeting a nonbinary person: <a target="_blank" href="https://valprehension.com/genderqueer-101/">https://valprehension.com/genderqueer-101/</a></p><p>-an answer to common questions: </p><p><a target="_blank" href="https://everydayfeminism.com/2015/08/trans-questions-201/">https://everydayfeminism.com/2015/08/trans-questions-201/</a></p><p>-a video to explain the term nonbinary to kids:</p><p><a target="_blank" href="https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380">https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380</a></p><p>-a basic trans healthcare breakdown: <a target="_blank" href="https://www.healthline.com/health/transgender-friendly-healthcare-language#4">https://www.healthline.com/health/transgender-friendly-healthcare-language#4</a></p><p>-also a fellow podcast! How To Be a Girl</p><p>-a website with a lot of articles directed at parents of kids coming out as LGBTQ: <a target="_blank" href="http://mykidisgay.com/category/gender/">http://mykidisgay.com/category/gender/</a></p><p>-Chronically Fully Sick in Facebook</p><p>-post on They pronouns in grammar: <a target="_blank" href="https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/">https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/</a></p><p>-article about talking to a trans person etiquette:</p><p><a target="_blank" href="https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/">https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/</a></p><p>-PDFs of a book about gender:</p></blockquote><blockquote> <a target="_blank" href="https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html">https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html</a></blockquote></blockquote><p><strong>What is the best purchase under $100 that helped your life</strong></p><blockquote><blockquote><p>CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)</p><p>-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)</p><p>-Electric Heating pad (I got this a long time ago but I believe it was $20-30)</p></blockquote></blockquote><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia</a>, <a target="_blank" href="http://jaoa.org/article.aspx?articleid=2093276">benign hypermobility</a>, after effects of<a target="_blank" href="https://www.lymedisease.org/lyme-disease-symptom-checklist/"> Lyme disease</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/depression/index.shtml">depression</a>, generalized anxiety</p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>8</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>Same person I am now? Maybe more confident in my ability to do multiple things in a day.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.</p><p><strong>Do you have any life hacks? *</strong></p><p>Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>Yes</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>How much pain I’m actually in and how long it actually lasts</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.</p><p><strong>What is your best coping mechanism? *</strong></p><p>writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.</p><p> </p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>An Invisible Illness Podcast</itunes:subtitle><itunes:summary>First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>49:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5b0e030a352f5356912a1057/1528921100120/1500w/Lyme%2C+Fibromyalgia%2C+Migraines%2C+Medication%2C+and+Nonbinary+Trans+Talk+on+Invisible+Not+Broke.jpg"/><itunes:title>Lymes, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part I</itunes:title><content:encoded><![CDATA[<p> Here are some resources for the podcast notes!</p><p>-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (<a href="tel:+18775658860" target="_blank">+18775658860</a> US/ <a href="tel:+18773306366" target="_blank">+18773306366</a> CANADA/ <a href="https://www.translifeline.org/" target="_blank">https://www.translifeline.org/</a>)</p><p>-A basic definition & concept breakdown: <a href="http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/" target="_blank">http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/</a></p><p>-An article about understanding genderqueer, a term like nonbinary <a href="https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/" target="_blank">https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/</a></p><p>-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment</p><p>-<a href="http://comingoutasnonbinary.tumblr.com/" target="_blank">comingoutasnonbinary.tumblr.com</a></p><p>-blog about chronic illness: chronicill on wordpress or <a href="http://chronc-ill.tumblr.com/" target="_blank">chronc-ill.tumblr.com</a></p><p>-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)</p><p>-nonbinary 101/meeting a nonbinary person: <a href="https://valprehension.com/genderqueer-101/" target="_blank">https://valprehension.com/genderqueer-101/</a></p><p>-an answer to common questions:</p><p><a href="https://everydayfeminism.com/2015/08/trans-questions-201/" target="_blank">https://everydayfeminism.com/2015/08/trans-questions-201/</a></p><p>-a video to explain the term nonbinary to kids:</p><p><a href="https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380" target="_blank">https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380</a></p><p>-a basic trans healthcare breakdown: <a href="https://www.healthline.com/health/transgender-friendly-healthcare-language#4" target="_blank">https://www.healthline.com/health/transgender-friendly-healthcare-language#4</a></p><p>-also a fellow podcast! How To Be a Girl</p><p>-a website with a lot of articles directed at parents of kids coming out as LGBTQ: <a href="http://mykidisgay.com/category/gender/" target="_blank">http://mykidisgay.com/category/gender/</a></p><p>-Chronically Fully Sick in Facebook</p><p>-post on They pronouns in grammar: <a href="https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/" target="_blank">https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/</a></p><p>-article about talking to a trans person etiquette:</p><p><a href="https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/" target="_blank">https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/</a></p><p>-PDFs of a book about gender:</p><p><a href="http://www.thegenderbook.com/the-book/4553374748" target="_blank">http://www.thegenderbook.com/the-book/4553374748</a></p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)</p><p>-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)</p><p>-Electric Heating pad (I got this a long time ago but I believe it was $20-30)</p><p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780" target="_blank">fibromyalgia</a>, <a href="http://jaoa.org/article.aspx?articleid=2093276" target="_blank">benign hypermobility</a>, after effects of<a href="https://www.lymedisease.org/lyme-disease-symptom-checklist/" target="_blank"> Lyme disease</a>, <a href="https://www.nimh.nih.gov/health/topics/depression/index.shtml" target="_blank">depression</a>, generalized anxiety</p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>8</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>Same person I am now? Maybe more confident in my ability to do multiple things in a day.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.</p><p><strong>Do you have any life hacks? *</strong></p><p>Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *</strong></p><p>Yes</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.</p><p><strong>Is there anything you are afraid to tell people in your life? *</strong></p><p>How much pain I’m actually in and how long it actually lasts</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.</p><p><strong>What is your best coping mechanism? *</strong></p><p>writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b0e06d6f950b73551d56b46/1528921100117/Lymes-Fibromyalgie-Non-Binary-Trans.mp3" length="69444463" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5b0e06d6f950b73551d56b46/1528921100117/Lymes-Fibromyalgie-Non-Binary-Trans.mp3" length="69444463" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Lymes, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part I</media:title></media:content></item><item><title>Cost of Chronic Illness A Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 04 Jun 2018 13:16:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/17/cost-of-chronic-illness-a-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5afe31fc352f530714dfb622</guid><description>Kyros and I are back on our soapboxes again to take a clear look at the | |
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| <hr /><h1 class="text-align-center">Panel Discussion: The Cost of Having an Invisible Illness</h1><p> </p><p>Important Note:</p><p>According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. </p><p> As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.</p><p>RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.</p><p>Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.</p><p> </p><ol><li><strong>Financial Cost:</strong><ol><li>Repeated trips to the doctor each with its own co-pay.</li><li>Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. </li><li>Tests after tests.</li><li>Experimental procedures, not usually covered by insurance</li><li>Second opinions</li><li>Cost of prescriptions, even with insurance can be excessive. </li><li>Cost of medical supplies, over-the-counter meds, and medical equipment.</li><li>Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)</li><li>Taking a lot of time off work for all of these doctor appointments.</li><li>Loss of income if you cannot work / cannot keep a job.</li><li>Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.</li><li>Therapy for self and family</li><li>Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,</li></ol></li><li><strong>Physical Cost:</strong><ol><li>Harder time accessing help because people don’t believe you need it.</li><li>Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)</li><li>Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)</li><li>Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards</li><li>Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)</li><li>Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)</li><li> </li></ol></li><li><strong>Emotional Cost:</strong><ol><li>Conscious / unconscious need to act like nothing wrong, even on bad days.</li><li>Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.</li><li>Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.</li><li>Strain on relationships when others have to do more because you cannot.</li><li>Self loathing from needing someone to take care of you</li><li>Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness</li><li>Isolation and loneliness from being home all day while friends and family are at work. </li><li>Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.</li><li>Depression </li></ol></li></ol><p>Links:</p><p> </p><ol><li><a href="https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html">https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html</a></li><li><a href="https://themighty.com/2016/12/cost-expenses-having-chronic-disease/">https://themighty.com/2016/12/cost-expenses-having-chronic-disease/</a></li><li><a href="https://www.pinterest.com/pin/295267319303446311/">https://www.pinterest.com/pin/295267319303446311/</a></li><li><a href="http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/">http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/</a></li><li><a href="https://www.sciencedaily.com/releases/2012/09/120911091100.htm">https://www.sciencedaily.com/releases/2012/09/120911091100.htm</a></li><li><a href="http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll">http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll</a></li><li><a href="https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness">https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness</a></li><li>POV about costs from a woman in England: <a href="https://www.youtube.com/watch?v=qhnZVjEQKSM">https://www.youtube.com/watch?v=qhnZVjEQKSM</a></li></ol>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Kyros and I are back on our soapboxes again to take a clear look at the hidden and not so hidden cost of the most expensive hobby you could ever have...chronic illness</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:09:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5afe31fc352f530714dfb622/1531861390150/1500w/hidden-cost-of-invisible-illness-chronic-illness-podcast.jpg"/><itunes:title>The Cost of Disability and Chronic Illness</itunes:title><content:encoded><![CDATA[<p>Panel Discussion: The Cost of Having an Invisible Illness</p><p><br></p><p>Important Note:</p><p>According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008.</p><p>As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.</p><p>RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.</p><p>Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.</p><p><br></p><p>Financial Cost: Repeated trips to the doctor each with its own co-pay. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. Tests after tests. Experimental procedures, not usually covered by insurance Second opinions Cost of prescriptions, even with insurance can be excessive. Cost of medical supplies, over-the-counter meds, and medical equipment. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.) Taking a lot of time off work for all of these doctor appointments. Loss of income if you cannot work / cannot keep a job. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance. Therapy for self and family Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers, </p><p>Physical Cost: Harder time accessing help because people don’t believe you need it. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool) Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.) Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc) Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?) </p><p>Emotional Cost: Conscious / unconscious need to act like nothing wrong, even on bad days. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it. Strain on relationships when others have to do more because you cannot. Self loathing from needing someone to take care of you Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness Isolation and loneliness from being home all day while friends and family are at work. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go. Depression </p><p>Links:</p><p><br></p><p>https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html</p><p>https://themighty.com/2016/12/cost-expenses-having-chronic-disease/</p><p>https://www.pinterest.com/pin/295267319303446311/</p><p>http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/</p><p>https://www.sciencedaily.com/releases/2012/09/120911091100.htm</p><p>http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll</p><p>https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness</p><p>POV about costs from a woman in England: <a href="https://www.youtube.com/watch?v=qhnZVjEQKSM">https://www.youtube.com/watch?v=qhnZVjEQKSM</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5afe297caa4a996443c5a461/1526606480151/Cost+of+Disability.mp3" length="99093217" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5afe297caa4a996443c5a461/1526606480151/Cost+of+Disability.mp3" length="99093217" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">The Cost of Disability and Chronic Illness</media:title></media:content></item><item><title>Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition </title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 28 May 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/18/tos-business-rare-disorder-pain-management-relationships-spoonie-edition-an-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5aff2cc02b6a286d03fdce6b</guid><description> This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein | |
| and I have been waiting a long time for this episode because I really want | |
| to talk to another person who has a chronic illness and had to close of | |
| business that they built. Some of you know that I also had to shut down my | |
| Menlo Park photography studio when my Ehlers Danlos became too severe to | |
| continue. We talked about everything from pain management, medical | |
| marijuana in California, the opioid crisis has always been a big one here, | |
| and getting on drug seeking lists when accessing pain medication, and the | |
| kind of behavior you have to show to be a "good" patient. Listen to the | |
| very end because we talk about what it’s like for spoonies to be in a | |
| relationship together, we talked about sex and disability (check out Kyros | |
| and my panel discussion about chronic illness and sex and relationships | |
| here), and we talk about some really good ideas for romantic low-stress | |
| spoony dates. | |
| Recommendations and Links | |
| A Better Pain Scale Hyperbole and A Half | |
| Golden Tiger Balm | |
| Apple AirPods | |
| Acupuncture and Thoracic Outlet Syndrome | |
| The Magicians | |
| Dr. Who | |
| What is your disorder? * | |
| Thoracic outlet syndrome. I also have scoliosis, myofascial pain syndrome, | |
| and chronic pain (Love that one, such a blanket term) | |
| If you would like to contact Jen you can find her on Instagram at | |
| rebel__lioness </description><content:encoded><![CDATA[<img class="thumb-image" alt="IMG_4059.PNG" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aff2c9f88251b97ab71675a/1526672592940/IMG_4059.PNG" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5aff2c9f88251b97ab71675a" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aff2c9f88251b97ab71675a/1526672592940/IMG_4059.PNG?format=1000w" /> | |
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| <p> This week we’re talking about the <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988">Thoracic Outlet Syndrome</a> with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a> became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships <a href="http://invisiblenotbroken.com/home?tag=Sex">here</a>), and we talk about some really good ideas for romantic low-stress spoony dates.</p><p>If you would like to contact Jen you can find her on Instagram at <a target="_blank" href="https://www.instagram.com/rebel__lioness/">rebel__lioness </a></p><h2 class="text-align-center">Recommendations and Links</h2><p class="text-align-center"><a target="_blank" href="http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html">A Better Pain Scale Hyperbole and A Half</a></p><p class="text-align-center"><a target="_blank" href="https://www.amazon.com/Golden-Tiger-Natural-Relief-Cream3oz/dp/B0037IYWRE/ref=sr_1_6_a_it?ie=UTF8&qid=1526682459&sr=8-6&keywords=golden+tiger+balm">Golden Tiger Balm</a></p><p class="text-align-center"><a target="_blank" href="https://www.apple.com/shop/product/MMEF2AM/A/airpods">Apple AirPods</a></p><p class="text-align-center"><a target="_blank" href="http://www.acupuncturetoday.com/mpacms/at/article.php?id=27739">Acupuncture and Thoracic Outlet Syndrome</a></p><p class="text-align-center"><a target="_blank" href="http://www.syfy.com/themagicians">The Magicians</a></p><p class="text-align-center"><a target="_blank" href="https://www.bbc.co.uk/programmes/b006q2x0">Dr. Who</a></p><hr /><h2 class="text-align-center">Spoonie & Spoonie Relationship Advice</h2><hr /><p>1) This is probably the most important one: having massive patience, understanding, and flexibility with each other. Pain does not work on a timeline, and neither can we. These are all skills and practices that take time. <br />2)Teamwork cooking. We decide what we want to eat for dinner based on our pain level and what we are able to do. Then we help each other make the dinner. Some nights it’s “tap out” style. Like, I can’t keep cutting/doing this anymore, you’re up! We also cook things that are easy to make, often even prepared foods. We use paper plates, and plastic cups (it kills me inside to make waste, but dishes aren’t a thing either of us can do anymore). <br />3) Having a plan before we do anything. Cooking, going to the store, leaving the house for a doctors appointment, etc. Take the time to plan out what you will both realistically need before you start the activity/outing. <br />4) Divide and conquer the chores. Decide what each of you can realistically do, what you cannot do, and what you can do together as a team. Despite the fact that both my partner and I have pain in our hands and arms, we manage to get most of the chores done around the house. Of course the deep cleaning is out of the question for us, but we are lucky enough to have friends and family that help us with that when we need it.<br />5)Take a day just to relax. This is really important to avoid complete burnout. We try to do this on Sundays. It doesn’t always work out, but at least try. To us, this means a day where neither one of us have to do anything physical to anger our pain. It also means a day where we don't talk too much about doctors appts/frustrations, etc. A true day off for your mind and body. A guided meditation is great way to start that off (I use a wonderful app called Insight Timer). </p><hr /><p><strong>What is your disorder? </strong>*</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988">Thoracic outlet syndrome</a>. I also have <a href="https://www.mayoclinic.org/diseases-conditions/scoliosis/symptoms-causes/syc-20350716mayofascial pain syndrome">scoliosis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/myofascial-pain-syndrome/symptoms-causes/syc-20375444">myofascial pain syndrome</a>, and chronic pain (Love that one, such a blanket term)</p><p><strong>Do you have any life hacks? *</strong></p><p>Definitely yes. I use electric everything possible in the kitchen, can openers etc. I have a stool and every room so I can reach up to high places without having to lift my arm over my head. I have plastic cups and paper plates, which I hate because of the waste, but have to do because I am unable to do dishes. I keep things that I need on an accessible shelf instead of in a drawer or cabinet. I only use speak text is I cannot type. I have many pillows that I use for various things, for example, I have to use a pillow on each side of me while in the car to prop up my arms. I wear a scarf most of the time to keep my neck warm so it doesn’t flare up. I live in Yoga Pants and a tank top off my left shoulder, bras are never coming back into my life. Wireless headphones for my phone, so I don’t have to hold it. I’m sure there’s more. Meditation is high on the list for sure. I also use <a target="_blank" href="https://www.medicalmarijuana.com/medical-marijuana-treatments-cannabis-uses/medical-marijuana-cannabis-relieves-symptoms-of-tos/">medical cannabis,</a> which helps. I do therapy weekly. When I’m in a flare-up, I find my best coping mechanism is distraction. TV, podcasts, music, or taking a walk. In the rare days I’m not flared up, I’m usually OK with a set of tools that I have kind of created for myself.</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>Basically just promoting awareness about <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988">TOS.</a> I am a member of a few Facebook support groups that have really helped me, and I would like to spread the word about that if people don’t already know.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Patience</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>It’s a tie between my <a target="_blank" href="https://www.apple.com/airpods/?afid=p238%7Cso1CtLPxp-dc_mtid_1870765e38482_pcrid_269959401339_&cid=aos-us-kwgo-btb--slid--product-">wireless headphones</a> and my <a target="_blank" href="https://www.amazon.com/Golden-Tiger-Natural-Relief-Cream3oz/dp/B0037IYWRE/ref=sr_1_6_a_it?ie=UTF8&qid=1526682459&sr=8-6&keywords=golden+tiger+balm">golden tiger topical</a></p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle> An invisible illness podcast </itunes:subtitle><itunes:summary>This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my Ehlers Danlos became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships here), and we talk about some really good ideas for romantic low-stress spoony dates. | |
| Recommendations and Links | |
| A Better Pain Scale Hyperbole and A Half | |
| Golden Tiger Balm | |
| Apple AirPods | |
| Acupuncture and Thoracic Outlet Syndrome | |
| The Magicians | |
| Dr. Who</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:12:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5aff2cc02b6a286d03fdce6b/1527643629016/1500w/IMG_4059.PNG"/><itunes:title>Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition </itunes:title><content:encoded><![CDATA[<p>This week we’re talking about the <a href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988" target="_blank">Thoracic Outlet Syndrome</a> with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my <a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125" target="_blank">Ehlers Danlos</a> became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships <a href="/home?tag=Sex">here</a>), and we talk about some really good ideas for romantic low-stress spoony dates.</p><p>Recommendations and Links</p><p><a href="http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html" target="_blank">A Better Pain Scale Hyperbole and A Half</a></p><p><a href="https://www.amazon.com/Golden-Tiger-Natural-Relief-Cream3oz/dp/B0037IYWRE/ref=sr_1_6_a_it?ie=UTF8&qid=1526682459&sr=8-6&keywords=golden+tiger+balm" target="_blank">Golden Tiger Balm</a></p><p><a href="https://www.apple.com/shop/product/MMEF2AM/A/airpods" target="_blank">Apple AirPods</a></p><p><a href="http://www.acupuncturetoday.com/mpacms/at/article.php?id=27739" target="_blank">Acupuncture and Thoracic Outlet Syndrome</a></p><p><a href="http://www.syfy.com/themagicians" target="_blank"><strong>The Magicians</strong></a><strong><br></strong></p><p><a href="https://www.bbc.co.uk/programmes/b006q2x0" target="_blank">Dr. Who</a></p><p><strong>What is your disorder? </strong>*</p><p><a href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988" target="_blank">Thoracic outlet syndrome</a>. I also have <a href="https://www.mayoclinic.org/diseases-conditions/scoliosis/symptoms-causes/syc-20350716mayofascial pain syndrome">scoliosis</a>, <a href="https://www.mayoclinic.org/diseases-conditions/myofascial-pain-syndrome/symptoms-causes/syc-20375444" target="_blank">myofascial pain syndrome</a>, and chronic pain (Love that one, such a blanket term)<br></p><p><strong>Do you have any life hacks? *</strong></p><p>Definitely yes. I use electric everything possible in the kitchen, can openers etc. I have a stool and every room so I can reach up to high places without having to lift my arm over my head. I have plastic cups and paper plates, which I hate because of the waste, but have to do because I am unable to do dishes. I keep things that I need on an accessible shelf instead of in a drawer or cabinet. I only use speak text is I cannot type. I have many pillows that I use for various things, for example, I have to use a pillow on each side of me while in the car to prop up my arms. I wear a scarf most of the time to keep my neck warm so it doesn’t flare up. I live in Yoga Pants and a tank top off my left shoulder, bras are never coming back into my life. Wireless headphones for my phone, so I don’t have to hold it. I’m sure there’s more. Meditation is high on the list for sure. I also use <a href="https://www.medicalmarijuana.com/medical-marijuana-treatments-cannabis-uses/medical-marijuana-cannabis-relieves-symptoms-of-tos/" target="_blank">medical cannabis,</a> which helps. I do therapy weekly. When I’m in a flare-up, I find my best coping mechanism is distraction. TV, podcasts, music, or taking a walk. In the rare days I’m not flared up, I’m usually OK with a set of tools that I have kind of created for myself.<br></p><p><strong>Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.</strong></p><p>Basically just promoting awareness about <a href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988" target="_blank">TOS.</a> I am a member of a few Facebook support groups that have really helped me, and I would like to spread the word about that if people don’t already know.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>Patience</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>It’s a tie between my <a href="https://www.apple.com/airpods/?afid=p238%7Cso1CtLPxp-dc_mtid_1870765e38482_pcrid_269959401339_&cid=aos-us-kwgo-btb--slid--product-" target="_blank">wireless headphones</a> and my <a href="https://www.amazon.com/Golden-Tiger-Natural-Relief-Cream3oz/dp/B0037IYWRE/ref=sr_1_6_a_it?ie=UTF8&qid=1526682459&sr=8-6&keywords=golden+tiger+balm" target="_blank">golden tiger topical</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aff4ec1575d1f5edada564c/1526681564302/TOS-Invisible-Illness-Podcast.mp3" length="102506706" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aff4ec1575d1f5edada564c/1526681564302/TOS-Invisible-Illness-Podcast.mp3" length="102506706" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition </media:title></media:content></item><item><title>Secret Spoonie II A Chronic Illness Podcast</title><category>Secret Spoonie</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 21 May 2018 13:32:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/21/secret-spoonie-chronic-illness-podcast-fibromyalgia-endometriosis</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5af09bd2758d46b85c11c372</guid><description> Hello everyone and welcome back to Hidden in Plain Sight. For those of you | |
| just joining me, my intent is for this to be a monthly column about the | |
| trials and tribulations of living life with invisible illnesses that (most) | |
| people don’t know about. To recap: Over the last twenty-eight years, I have | |
| had numerous major surgeries, and a handful of minor ones, in addition to | |
| dozens of other (often invasive) medical procedures. I’ve had organs | |
| removed and a metal plate and cage implanted in my neck. I have been | |
| formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing | |
| Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four | |
| Endometriosis. I am not entirely closeted, as some people do know about my | |
| medical conditions, but for the most part I live my life in a state of | |
| semi-secret. I hope that what I write here will resonate with some of you | |
| who might be in a similar position, and let you know that you are not | |
| alone.</description><content:encoded><![CDATA[<img class="thumb-image" alt="secret-spoonie-chronic-illness-podcast.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af37715aa4a996121d45e38/1525905244976/secret-spoonie-chronic-illness-podcast.jpg" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5af37715aa4a996121d45e38" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af37715aa4a996121d45e38/1525905244976/secret-spoonie-chronic-illness-podcast.jpg?format=1000w" /> | |
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| <h1 class="text-align-center"><strong>Hidden in Plain Sight</strong></h1><h1 class="text-align-center"><strong>The Life of a Secret Spoonie: Part Two: Origins</strong></h1><p><strong> </strong></p><p>Hello everyone and welcome back to Hidden in Plain Sight. For those of you just joining me, my intent is for this to be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. To recap: Over the last twenty-eight years, I have had numerous major surgeries, and a handful of minor ones, in addition to dozens of other (often invasive) medical procedures. I’ve had organs removed and a metal plate and cage implanted in my neck. I have been formally diagnosed with <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961">Spinal Stenosis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">Fibromyalgia</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808">Ankylosing Spondylitis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061">Peripheral Neuropathy</a>, <a target="_blank" href="https://www.nhlbi.nih.gov/health-topics/raynauds">Raynaud’s Syndrome</a>, and <a target="_blank" href="https://www.hopkinsmedicine.org/healthlibrary/conditions/gynecological_health/endometriosis_85,P00573">Stage Four Endometriosis</a>. I am not entirely closeted, as some people do know about my medical conditions, but for the most part I live my life in a state of semi-secret. I hope that what I write here will resonate with some of you who might be in a similar position, and let you know that you are not alone.</p><p> </p><p>By now some of you may be wondering why I choose to live like this. The question I get most from people, when they hear about my medical situation, is “Why don’t you talk about that?” Often, this sounds less like a question and more like an accusation: as in: “Why didn’t I know about that?” And herein lies one of the many dilemmas of being a closeted chronically ill person; if the idea is that I choose, willingly, willfully, not to openly disclose my situation to everyone I meet, then why is the response often indignant surprise with a veneer of anger when I do? While those who are also chronically ill usually seem concerned, I get the distinct impression that people who are not chronically ill themselves feel almost entitled to know everything about what’s going on with my medical life. I don’t know why this is the case, but I have some theories.</p><p> </p><p>I believe that today, in the twenty-first century, the age of social media everywhere and all that it offers, many people have come to expect unfettered access to a stunning amount of readily available information. Sometimes this information is of a very personal nature. Anyone can follow a celebrity on Instagram and immediately know what she ate for breakfast that morning. In today’s media saturated world, we have access to almost unlimited data; much of it what would probably be considered private in nature. With the click of a key, or the swipe of a finger, we can peer into the most intimate details of people’s lives; sometimes figuratively, sometimes literally. We now live in an era where privacy is no longer the expectation. In fact, some seem to see it as a sort of privilege. This, however, was not always the case.</p><p> </p><p>I realize that many people with chronic pain often long for a diagnosis, sometimes for (what must be brutal) decades at a time. It was the exact opposite for me. I was diagnosed at a relatively young age, in my early twenties, at a time when most young people (myself included) long to be seen as “normal” while simultaneously trying to forge a sense of self-identity from the bittersweet ravages of post-puberty. It was this internal struggle that ultimately led to my decision to hide my invisible illness from the world at large. Of course, those in my innermost circle had to know, because how else could I describe my reasons for staying home to rest rather than going out with my friends on a Saturday night? More often than not, as soon as I heard the car pull away, I was on the couch with a heating pad. I think that, more than anything else, it was my desire not to be seen as “sick” that made me do it. As a newly minted young adult, I didn’t want to be thought of as not fun, the one left behind, or even worse, not invited in the first place. It was also the early nineteen eighties, long before social media was a glint in someone’s eye. There were no understanding online communities, safely anonymous support groups, no way to quickly search for what each new symptom meant. My biggest fear was always that I would be ostracized from my own social community; one based largely on having fun and sharing experiences together.</p><p> </p><p>Turns out that my fears were not completely unwarranted; I have lost some friends along the way. With each additional diagnosis, or another surgery, certain people in my life have faded into the background. Some slipped slowly from the friend slot into the acquaintance one. Others disappeared entirely. In some cases, it felt like a natural progression, while in others it was a devastating loss. I guess you learn who your real friends are when the chips are down. Maybe the best thing about being a secret spoonie is also the worst thing about it: If I’m able to effectively hide my invisible illness from people, I don’t get their condescending pity, but I also don’t get the sweet understanding. As many of you already know, being chronically ill is a challenge in many respects, both physical and mental, and sometimes we need a little help from our friends, even when (maybe especially when) we don’t want to ask for it. Having an invisible illness makes things both easier and harder; we can hide in plain sight, but we also risk not being seen when we want to be…when we need to be. Living in secret has served me well in some respects; in others, not so much. My choice to live like this has been both a liability and a form of protective armor: the paradox of being closeted and chronically ill. </p><p>Thanks for reading. Until next time,</p><p><em>Secret Spoonie</em></p><p> </p><p>If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: <a target="_blank" href="mailto:[email protected]">[email protected]</a></p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Fibromyalgia, Endometriosis, Peripheral Neuropathy, Spinal Stenosis, Raynaud's Syndrome</itunes:subtitle><itunes:summary>This is Part II of our Invisible Illness podcast segment: The Secret Spoonie. This episode is all about what it is like to have a secret chronic illness and how that effects friendships and growing up.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>09:45</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5af09bd2758d46b85c11c372/1526909558896/1500w/IMG_3969.PNG"/><itunes:title>The Secret Spoonie A Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<p></p><p>Hello everyone and welcome back to Hidden in Plain Sight. For those of you just joining me, my intent is for this to be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. To recap: Over the last twenty-eight years, I have had numerous major surgeries, and a handful of minor ones, in addition to dozens of other (often invasive) medical procedures. I’ve had organs removed and a metal plate and cage implanted in my neck. I have been formally diagnosed with <a href="https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961" target="_blank">Spinal Stenosis</a>, <a href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780" target="_blank">Fibromyalgia</a>, <a href="https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808" target="_blank">Ankylosing Spondylitis</a>, <a href="https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061" target="_blank">Peripheral Neuropathy</a>, <a href="https://www.nhlbi.nih.gov/health-topics/raynauds" target="_blank">Raynaud’s Syndrome</a>, and <a href="https://www.hopkinsmedicine.org/healthlibrary/conditions/gynecological_health/endometriosis_85,P00573" target="_blank">Stage Four Endometriosis</a>. I am not entirely closeted, as some people do know about my medical conditions, but for the most part I live my life in a state of semi-secret. I hope that what I write here will resonate with some of you who might be in a similar position, and let you know that you are not alone.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af36caa70a6ad674b059ffc/1525902520298/secret-+spoonie.m4a" length="4688556" type="audio/x-m4a"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af36caa70a6ad674b059ffc/1525902520298/secret-+spoonie.m4a" length="4688556" type="audio/x-m4a" isDefault="true" medium="audio"><media:title type="plain">The Secret Spoonie A Chronic Illness Podcast</media:title></media:content></item><item><title>Hashimotos, Alopecia, Author Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies A Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 14 May 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/5/14/jenny-berk-author-hashimotos-alopecia-body-image-chronic-illness-parenting-and-zombies</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5af089d56d2a73731f8256cd</guid><description>I had far too much fun interviewing best selling author and coach Jenny | |
| Eden (seriously buy her book The Body Image Blueprint). We talk parenting | |
| with chronic illness (she has Hashimotos and Alopecia areata). We talk | |
| anorexia and body image and raising daughters. We even talk zombies. I hope | |
| you enjoy and head over to Jenny’s coaching website Jenny Eden Coaching | |
| Until next week’s chronic illness podcast: Be Kind. Be Gentle. Be A Badass.</description><content:encoded><![CDATA[<a href="https://www.amazon.com/Body-Image-Blueprint-Go-Self-Reverence/dp/0998857904?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0998857904" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/41aYrZ8M7HL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Body-Image-Blueprint-Go-Self-Reverence/dp/0998857904?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0998857904" target="new" class="product-title title">The Body Image Blueprint: Your Go-To Guide for Radical Self-Reverence</a> | |
| By Jenny Eden Berk MSEd | |
| <a href="https://www.amazon.com/Body-Image-Blueprint-Go-Self-Reverence/dp/0998857904?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0998857904" target="new" class="buy-button"><input type="button" class="sqs-amazon-button sqs-system-button sqs-editable-button" value="Buy on Amazon"/></a> | |
| <h2 class="text-align-center">Show Notes</h2><ul><li><a target="_blank" href="https://jennyedencoaching.leadpages.co/the-body-image-blueprint-book-launch/">The Body Image Blueprint</a></li><li><a target="_blank" href="http://jennyedencoaching.com/">Jenny Eden Coaching</a></li><li><a href="https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855">Hashimotos</a></li><li><a target="_blank" href="https://www.naaf.org/alopecia-areata">Alopecia Areata</a></li><li><a target="_blank" href="https://adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/body-dysmorphic-disorder-bdd">Body Dysmorphia</a></li><li><a target="_blank" href="https://www.nationaleatingdisorders.org/help-support/contact-helpline">National Eating Disorder Helpline</a></li><li><a target="_blank" href="https://www.goodreads.com/user/sign_in?returnurl=%2Fquotes%2F7553243-mother-teresa-didn-t-walk-around-complaining-about-her-thighs---">Sarah Silverman</a></li><li><a target="_blank" href="https://tim.blog/">Time Ferris</a></li><li><a target="_blank" href="http://www.trutv.com/shows/adam-ruins-everything/blog/adams-sources/adam-ruins-weight-loss.html">Adam Ruins Weight Loss</a></li><li><a target="_blank" href="https://zombiesrungame.com/">Zombies, Run App</a></li><li><a target="_blank" href="https://www.purplecarrot.com/plans?coupon=Purple25&gclid=Cj0KCQjwuMrXBRC_ARIsALWZrIjhKBIwjnTM5yPcumURb2RW8PLnSiF-4Y8eZjTaSJjgWtKGd4Mgr00aAg5BEALw_wcB&signup=modal&utm_campaign=adwordsbranded_su&utm_source=adwordsb">Purple Carrot</a></li></ul> | |
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| <hr /><p><strong>What is your disorder? *</strong></p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855">Hashimotos</a> and <a target="_blank" href="https://www.naaf.org/alopecia-areata">Alopecia areata</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>15</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>I was frustrated but managing.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>I'd have the energy to match what is in my head to do and I would not be self-conscious about my hair</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>That you can thrive with chronic illnesses</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>a cure for both of these ailments</p><p><strong>Do you have any life hacks? *</strong></p><p>trying to find them! Meditation</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I get a lot of support from my community, my friends and my family.</p><p><strong>What is your best coping mechanism? *</strong></p><p>meditation</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>that there will be more effective treatments</p><p><strong>What is your favorite swear word?</strong></p><p>fuck</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>my business - <a target="_blank" href="http://jennyedencoaching.com/">Jenny Eden Coaching</a></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>that I am resilient - much more so than I thought.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>using the <a target="_blank" href="https://www.purplecarrot.com/plans?x=3&gclid=CjwKCAjw8r_XBRBkEiwAjWGLlMJj0zpV-hXAeM0jyn43I52WChibIZC6ubC5y_SY42BX327w6mEuchoCYAYQAvD_BwE&signup=modal&utm_campaign=adwordsbrandsite&utm_source=adwordsb">Purple Carrot</a> in home meal delivery service ($78 a month)</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>I had far too much fun interviewing best selling author and coach Jenny Eden (seriously buy her book The Body Image Blueprint). We talk parenting with chronic illness (she has Hashimotos and Alopecia areata). We talk anorexia and body image and raising daughters. We even talk zombies. I hope you enjoy and head over to Jenny’s coaching website Jenny Eden Coaching Until next week’s chronic illness podcast: Be Kind. Be Gentle. Be A Badass.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>42:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5af089d56d2a73731f8256cd/1526304618204/1500w/Interview-jenny-berk-best-selling-author-hashimotos-alopecia-body-image.jpg"/><itunes:title>Hashimotos, AlopeciaAuthor Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies</itunes:title><content:encoded><![CDATA[<p></p><p>I had far too much fun interviewing best selling author and coach <a href="http://jennyedencoaching.com/" target="_blank">Jenny Eden</a> (seriously buy her book <a href="https://jennyedencoaching.leadpages.co/the-body-image-blueprint-book-launch/" target="_blank">The Body Image Blueprint</a>). We talk parenting with chronic illness (she has <a href="https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855" target="_blank">Hashimotos</a> and <a href="https://www.naaf.org/alopecia-areata" target="_blank">Alopecia areata</a>). We talk anorexia and body image and raising daughters. We even talk zombies. I hope you enjoy and head over to Jenny’s coaching website <a href="http://jennyedencoaching.com/" target="_blank">Jenny Eden Coaching</a> Until next week’s chronic illness podcast: Be Kind. Be Gentle. Be A Badass.</p><p><strong>What is your disorder? *</strong></p><p><a href="https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855" target="_blank">Hashimotos</a> and <a href="https://www.naaf.org/alopecia-areata" target="_blank">Alopecia areata</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>15</p><p><strong>Who were you before your illness became debilitating? *</strong></p><p>I was frustrated but managing.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>I'd have the energy to match what is in my head to do and I would not be self-conscious about my hair</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>That you can thrive with chronic illnesses</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>a cure for both of these ailments</p><p><strong>Do you have any life hacks? *</strong></p><p>trying to find them! Meditation</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I get a lot of support from my community, my friends and my family.</p><p><strong>What is your best coping mechanism? *</strong></p><p>meditation</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>that there will be more effective treatments</p><p><strong>What is your favorite swear word?</strong></p><p>fuck</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.</strong></p><p>my business - <a href="http://jennyedencoaching.com/" target="_blank">Jenny Eden Coaching</a></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>that I am resilient - much more so than I thought.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>using the <a href="https://www.purplecarrot.com/plans?x=3&gclid=CjwKCAjw8r_XBRBkEiwAjWGLlMJj0zpV-hXAeM0jyn43I52WChibIZC6ubC5y_SY42BX327w6mEuchoCYAYQAvD_BwE&signup=modal&utm_campaign=adwordsbrandsite&utm_source=adwordsb" target="_blank">Purple Carrot</a> in home meal delivery service ($78 a month)</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af3818603ce6449ddb15b5a/1525908017962/Hashimotos%2C+Alopecia%2C+Body+Image%2C+Chronic+Illness+Parenting%2C+and+Zombies.mp3" length="60207147" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af3818603ce6449ddb15b5a/1525908017962/Hashimotos%2C+Alopecia%2C+Body+Image%2C+Chronic+Illness+Parenting%2C+and+Zombies.mp3" length="60207147" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Hashimotos, AlopeciaAuthor Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies</media:title></media:content></item><item><title>Ulcerative Colitis: Jackson Pollock, Life Hacks, Chronic Fatigue, and Questions To Never Ask Interview with Holly Fowler {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Tue, 08 May 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/18/ulcerative-colitis-jackson-pollock-life-hacks-and-questions-to-never-ask-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ad8063303ce646d1a1ccb8c</guid><description>Click title to listen to interview with Colitiscope Nutrition founder | |
| Holly Fowler about her Ulcerative Colitis: Jackson Pollock, Life Hacks, and | |
| Questions To Never Ask {Chronic Illness Podcast}</description><content:encoded><![CDATA[<img class="thumb-image" alt="Interview Holly Fowler Colitis, Romance, Travel With IBS, & What To Never Ask A Person With Chronic Illness.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af21090758d460acf547b7f/1525813409081/Interview+Holly+Fowler+Colitis%2C+Romance%2C+Travel+With+IBS%2C+%26+What+To+Never+Ask+A+Person+With+Chronic+Illness.jpg" data-image-dimensions="1366x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5af21090758d460acf547b7f" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5af21090758d460acf547b7f/1525813409081/Interview+Holly+Fowler+Colitis%2C+Romance%2C+Travel+With+IBS%2C+%26+What+To+Never+Ask+A+Person+With+Chronic+Illness.jpg?format=1000w" /> | |
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| <hr /><h2 class="text-align-center">Holly Fowler's blog: <a target="_blank" href="http://www.colitiscopenutrition.com/">www.colitiscopenutrition.com</a></h2><h2 class="text-align-center">Holly Fowler's Instagram: <a target="_blank" href="http://www.instagram.com/colitiscopenutrition">www.instagram.com/colitiscopenutrition</a></h2><h2 class="text-align-center"> </h2><h2 class="text-align-center">1. <a target="_blank" href="http://www.colitiscopenutrition.com/11-life-hacks-for-minimizing-chronic-fatigue/?preview_id=824&preview_nonce=2c01d0a32e&post_format=standard&_thumbnail_id=830&preview=true">11 Life Hacks for Minimizing Chronic Fatigue</a></h2><h2 class="text-align-center">2. <a target="_blank" href="http://www.colitiscopenutrition.com/coffee-alternatives/">Coffee Alternatives: When Coffee Isn't An Option</a></h2><h2 class="text-align-center">3. <a target="_blank" href="http://www.colitiscopenutrition.com/brain-fog/">5 Ways To Combat Brain Fog</a></h2><h2 class="text-align-center">4. <a target="_blank" href="http://www.colitiscopenutrition.com/gluten-free-guide-restaurants/">Guide To Eating Gluten Free At A Restaurant (and enjoy it!)</a></h2><h2 class="text-align-center">5. <a target="_blank" href="http://www.colitiscopenutrition.com/travel-guide-ibd/">Guide To Traveling With IBD</a></h2><hr /><p>Name: <strong>Holly Fowler</strong></p><p><strong>Age: 29</strong></p><p><strong>Disorder: <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326">Ulcerative Colitis</a></strong></p><p><strong>What would make living and moving in the world easier for you?: I think it would be more awareness of invisible illnesses and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326">Ulcerative </a><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326">Colitis</a>, so that I don't feel like I have 3 heads when I try to explain it to people. Also, more access to bathrooms (!!!) so I don't feel ashamed when I make a scene in CVS begging to use their locked bathroom before an accident happens. (True story!)</strong></p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?: I definitely have to advocate for myself when I go to doctors other than my GI. I never assume they understand the correlation between my medications, my allergies, and my current symptoms. I once went to the infirmary on my college campus for strep throat. Without looking at my chart, they just handed me amoxicillin and, because I trusted them, I took it. Within a day, I was in a full flare-up and was sick for a month before being hospitalized.</strong></p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>{Chronic Illness Podcast}</itunes:subtitle><itunes:summary>Click title to listen to interview with Colitiscope Nutrition founder Holly Fowler about her Ulcerative Colitis: Jackson Pollock, Life Hacks, and Questions To Never Ask {Chronic Illness Podcast}</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>1:02:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ad8063303ce646d1a1ccb8c/1525813879929/1500w/Interview+Holly+Fowler+Colitis%2C+Romance%2C+Travel+With+IBS%2C+%26+What+To+Never+Ask+A+Person+With+Chronic+Illness.jpg"/><itunes:title> Colitiscope Nutrition founder Holly Fowler about her Ulcerative Colitis: Jackson Pollock, Life Hacks, and Questions To Never Ask</itunes:title><content:encoded><![CDATA[<p>Click title to listen to interview with<a href="http://www.colitiscopenutrition.com/" target="_blank"> Colitiscope Nutrition</a> founder <a href="http://www.colitiscopenutrition.com/" target="_blank">Holly Fowler</a> about her <a href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326" target="_blank">Ulcerative Colitis</a>: Jackson Pollock, Life Hacks, and Questions To Never Ask {Chronic Illness Podcast}</p><p>Name: <strong>Holly Fowler</strong></p><p><strong>Age: 29</strong></p><p><strong>Disorder: </strong><a href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326" target="_blank"><strong>Ulcerative Colitis</strong></a></p><p><strong>What would make living and moving in the world easier for you?: I think it would be more awareness of invisible illnesses and </strong><a href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326" target="_blank"><strong>Ulcerative Colitis</strong></a><strong>, so that I don't feel like I have 3 heads when I try to explain it to people. Also, more access to bathrooms (!!!) so I don't feel ashamed when I make a scene in CVS begging to use their locked bathroom before an accident happens. (True story!)</strong></p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?: I definitely have to advocate for myself when I go to doctors other than my GI. I never assume they understand the correlation between my medications, my allergies, and my current symptoms. I once went to the infirmary on my college campus for strep throat. Without looking at my chart, they just handed me amoxicillin and, because I trusted them, I took it. Within a day, I was in a full flare-up and was sick for a month before being hospitalized.</strong>Holly Fowler's blog: <a href="http://www.colitiscopenutrition.com/" target="_blank">www.colitiscopenutrition.com</a></p><p>Holly Fowler's Instagram: <a href="http://www.instagram.com/colitiscopenutrition" target="_blank">www.instagram.com/colitiscopenutrition</a></p><p><br></p><p>1. <a href="http://www.colitiscopenutrition.com/11-life-hacks-for-minimizing-chronic-fatigue/?preview_id=824&preview_nonce=2c01d0a32e&post_format=standard&_thumbnail_id=830&preview=true" target="_blank">11 Life Hacks for Minimizing Chronic Fatigue</a></p><p>2. <a href="http://www.colitiscopenutrition.com/coffee-alternatives/" target="_blank">Coffee Alternatives: When Coffee Isn't An Option</a></p><p>3. <a href="http://www.colitiscopenutrition.com/brain-fog/" target="_blank">5 Ways To Combat Brain Fog</a></p><p>4. <a href="http://www.colitiscopenutrition.com/gluten-free-guide-restaurants/" target="_blank">Guide To Eating Gluten Free At A Restaurant (and enjoy it!)</a></p><p>5. <a href="http://www.colitiscopenutrition.com/travel-guide-ibd/" target="_blank">Guide To Traveling With IBD</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ad8065a562fa75adb9ae5bc/1524107104649/Ulcerative+Colitis.mp3" length="87598102" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ad8065a562fa75adb9ae5bc/1524107104649/Ulcerative+Colitis.mp3" length="87598102" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain"> Colitiscope Nutrition founder Holly Fowler about her Ulcerative Colitis: Jackson Pollock, Life Hacks, and Questions To Never Ask</media:title></media:content></item><item><title>Bipolar, PostPartum Depression, PTSD ,and Migraines : An Invisible Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 30 Apr 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/25/bipolar-post-partum-ptsd-and-migraines-an-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ae126bbaa4a9989a3356181</guid><description>From the best way to support a spoonie to great ways to manage anxiety to | |
| the true story of postpartum depression with and without medication this | |
| episode is absolutely full of great spoonie life hacks and some real | |
| information about bipolar, anxiety, and migraines from high school to | |
| college to being a new mom. Make sure to share this episode with anyone who | |
| has or anyone you would like to know more about postpartum depression, | |
| migraines, or bipolar. Thank you and until next week Be kind. Be gentle, | |
| and be a bad ass.</description><content:encoded><![CDATA[<img class="thumb-image" alt="bipolar-post-partum-ptsd-and-migraines-an-invisible-illness-podcast.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ae366c3352f536b0fb69512/1524852454615/bipolar-post-partum-ptsd-and-migraines-an-invisible-illness-podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5ae366c3352f536b0fb69512" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ae366c3352f536b0fb69512/1524852454615/bipolar-post-partum-ptsd-and-migraines-an-invisible-illness-podcast.jpg?format=1000w" /> | |
| <p>From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass.</p> | |
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| <h2 class="text-align-center">Links</h2><p class="text-align-center"><a target="_blank" href="https://americanmigrainefoundation.org/understanding-migraine/daith-piercings-101/">Daith </a><strong><a target="_blank" href="https://americanmigrainefoundation.org/understanding-migraine/daith-piercings-101/">piercing for migraines</a> </strong></p><p class="text-align-center"><a target="_blank" href="https://www.crisistextline.org/anxiety/"><strong>Text Anxiety Helpline</strong></a></p><h3 class="text-align-center">Follow Melissa On SOCIAL MEDIA:</h3><ul><li><p class="text-align-center"><a target="_blank" href="http://twitter.com/spoonie_mama">twitter.com/spoonie_mama</a></p></li><li><p class="text-align-center"><a target="_blank" href="http://instagram.com/spoonie_mama">instagram.com/spoonie_mama</a></p></li><li><p class="text-align-center"><a target="_blank" href="http://facebook.com/spooniemamablog">facebook.com/spooniemamablog</a></p></li><li><h2 class="text-align-center">Melissa Guida-Richard's Article & Blog Posts:</h2></li><li><p class="text-align-center"><a target="_blank" href="http://spoonie-mama.com/">S</a><a href="#">poonie Mama Blog</a></p></li><li><p class="text-align-center"><a target="_blank" href="https://themighty.com/2018/03/parenting-mother-migraine-sick/">T</a><a href="#">he Mighty Article</a></p></li><li><p class="text-align-center"><a target="_blank" href="https://spoonieauthorsnetwork.blog/2018/04/12/the-guilt-of-spoonie-parenting/">https://spoonieauthorsnetwork.blog/2018/04/12/the-guilt-of-spoonie-parenting/</a></p></li><li><p class="text-align-center"><a target="_blank" href="https://howdoesitfeeltobeadopted.com/2018/04/06/how-does-it-feel-to-be-adopted-melissa-guida-richards/">https://howdoesitfeeltobeadopted.com/2018/04/06/how-does-it-feel-to-be-adopted-melissa-guida-richards/</a></p></li><li><p class="text-align-center"><a target="_blank" href="https://www.buzzfeed.com/melissag4848f45f8/10-things-that-went-through-my-mind-when-i-found-o-18zh3?utm_term=.vpGR5ykLA#.onLvzlRPM">Buzz Feed Article</a></p></li></ul><h3 class="text-align-center">BIO:</h3><p> </p><p><strong>What is your disorder? *</strong></p><p><a target="_blank" href="https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml">bipolar disorder</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/publications/postpartum-depression-facts/index.shtml">postpartum depression</a>, and <a target="_blank" href="https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml">post-traumatic stress disorder.</a> <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201">Migraines</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>15</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>An energetic teen that loved singing and acting.</p><p><strong>What would you do if you were not dealing with your invisible illness? *</strong></p><p>I once had dreams of being a Broadway star.</p><p><strong>What would you like people to know about your daily life? *</strong></p><p>Some days are harder than others but every day with my family is worth living for.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>Eliminate the stigma surrounding mental illness!</p><p><strong>Do you have any life hacks? *</strong></p><p>Just common sense ones. Always be prepared, order your medication, use a pill box, find your best coping mechanisms and stick to a routine.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>My husband is my rock, and my sister in law is great too. Friends are helpful at times but only so much.</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>I went years without treatment.</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>Yes. I have lost lots of friendships over time, and it can be difficult being part of a family where your every move effects someone else.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Sometimes doctors don't believe me.</p><p><strong>What is your best coping mechanism? *</strong></p><p>I love writing. It helps me to work through my emotions and put everything objectively.</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>I am most concerned that I might one day stop coping so well. I hope that better meds without side effects will be created.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck.</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.</strong></p><p>My two picture book manuscripts I'm attempting to get published: Mommy's Little Monkeys- mom with bipolar and Tia's Tiny Turtle-aunt with PTSD. I'm trying to create books that will help families discuss mental illness and that will helpfully reduce the stigma.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>It's okay to fall apart and depend on someone else. I always hated asking for help.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>Pen and paper. Zoloft. Stress candles and bath bombs.</p><p>Melissa Guida-Richards has a Bachelors of Arts in Psychology and Criminal Justice. Awards include The<a target="_blank" href="http://www.fredonia.edu/news/ArchivesSearch/tabid/1101/ctl/ArticleView/mid/1878/articleId/4756/Students_honored_at_Rosa_Park_Scholarship_ceremony.aspx"> 2014 Rosa Parks scholarship and Michael A Garcia Award for her poem “Lo Siento, No Hablo Espanol</a>” as a junior at <a href="http://home.fredonia.edu/">Fredonia State University</a>.</p><p>She has been published on several blog sites including <a target="_blank" href="https://themighty.com/author/melissaguidarichards/#_=_">The Mighty</a>, <a target="_blank" href="https://spoonieauthorsnetwork.blog/">Spoonie Author’s Network</a>, and <a target="_blank" href="https://howdoesitfeeltobeadopted.com/">Adoptees Stories Connect</a>. Her blog, <a target="_blank" href="http://spoonie-mama.com/">Spoonie-Mama.com</a> is a safe place for mothers to read about honest experiences with motherhood, adoption, and chronic illness. It is a small community so far, but she has had people reach out to her for advice with their adopted children. She will also appear on the podcast, <a target="_blank" href="http://www.invisiblenotbroken.com">Invisible Not Broken</a>, in an interview discussing her battle with<a target="_blank" href="https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml"> bipolar disorder</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/publications/postpartum-depression-facts/index.shtml">postpartum depression</a>, and <a target="_blank" href="https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml">post-traumatic stress disorder.</a></p><p>Melissa is a stay at home mom, married to a stubborn redhead, and has two sons (2 years old and 9 months old.) Her family also includes two dogs, two cats, and two axolotls due to her husband’s avid love for animals. Chronic pain has been a big part of her life since the age of five-years-old but she has not let it stop her from being a frequent member of a mom group in Monroe County as well as an avid member of several online mom groups with over. When Melissa has some free time, she loves to write children’s picture books.</p><p>She is currently in the process of seeking an agent for the following picture books:</p><p>MOMMY’S LITTLE MONKEYS: Mommy has two mischievous monkeys, named Mania and Misery. Little CJ must work through his emotions and brave telling his parents how he really feels about his mother’s bipolar.</p><ul><li><p>TIA’S TINY TURTLE: Tia has a snapping turtle named Shelly. She doesn’t think she needs help...until her nephew, Mateo, almost gets bitten. Now, Mateo must convince his Tia to get help for her PTSD and see a special zookeeper who is also a therapist.</p></li><li><p>THE GUARDIAN ANGEL: Sandra, feels like she doesn’t belong in her family-she is latina and her moms are white. She wants nothing more than to fit in with her family but keeps getting angry and breaking her toys. Can an unexpected visitor help guide her to her superpower and help her avoid timeout?</p></li></ul><p>THE ODYSSEY OF A MILLENNIAL MAMA: After discovering a deep dark family secret, the author realizes she wants to become a mother, but there is one minor problem she needs to face first- infertility. At fifteen-years-old, she was diagnosed with <a target="_blank" href="https://www.google.com/search?q=pcos+mayo+clinic&oq=PCOS&aqs=chrome.1.0j35i39j0l4.4249j0j7&sourceid=chrome&ie=UTF-8">Polycystic Ovarian Syndrome</a> and decided she never wanted any of her own children anyway-thanks to her dysfunctional immigrant family. Now... things were different, she knew in her heart that she needed that biological connection. Baby fever took hold and so she and her fiance decided to try now, while her chronic pain was somewhat under control.</p><hr />]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast</itunes:subtitle><itunes:summary>From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>59:30</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ae126bbaa4a9989a3356181/1525095008971/1500w/bipolar-post-partum-ptsd-and-migraines-an-invisible-illness-podcast.jpg"/><itunes:title>Bipolar, PostPartum Depression, PTSD , and Migraines : An Invisible Illness Podcast</itunes:title><content:encoded><![CDATA[<p>Links</p><p><a href="https://americanmigrainefoundation.org/understanding-migraine/daith-piercings-101/" target="_blank">Daith <strong>piercing for migraines</strong></a><strong> </strong></p><p><a href="https://www.crisistextline.org/anxiety/" target="_blank"><strong>Text Anxiety Helpline</strong></a></p><p>Follow Melissa On SOCIAL MEDIA:</p><p><a href="http://twitter.com/spoonie_mama" target="_blank">twitter.com/spoonie_mama</a></p><p><a href="http://instagram.com/spoonie_mama" target="_blank">instagram.com/spoonie_mama</a></p><p><a href="http://facebook.com/spooniemamablog" target="_blank">facebook.com/spooniemamablog</a></p><p>Melissa Guida-Richard's Article & Blog Posts:</p><p><a href="http://spoonie-mama.com/" target="_blank">S</a><a href="#">poonie Mama Blog</a></p><p><a href="https://themighty.com/2018/03/parenting-mother-migraine-sick/" target="_blank">T</a><a href="#">he Mighty Article</a></p><p><a href="https://spoonieauthorsnetwork.blog/2018/04/12/the-guilt-of-spoonie-parenting/" target="_blank">https://spoonieauthorsnetwork.blog/2018/04/12/the-guilt-of-spoonie-parenting/</a></p><p><a href="https://howdoesitfeeltobeadopted.com/2018/04/06/how-does-it-feel-to-be-adopted-melissa-guida-richards/" target="_blank">https://howdoesitfeeltobeadopted.com/2018/04/06/how-does-it-feel-to-be-adopted-melissa-guida-richards/</a></p><p><a href="https://www.buzzfeed.com/melissag4848f45f8/10-things-that-went-through-my-mind-when-i-found-o-18zh3?utm_term=.vpGR5ykLA#.onLvzlRPM" target="_blank">Buzz Feed Article</a></p><p>BIO:</p><p><br></p><p>Melissa Guida-Richards has a Bachelors of Arts in Psychology and Criminal Justice. Awards include The<a href="http://www.fredonia.edu/news/ArchivesSearch/tabid/1101/ctl/ArticleView/mid/1878/articleId/4756/Students_honored_at_Rosa_Park_Scholarship_ceremony.aspx" target="_blank"> 2014 Rosa Parks scholarship and Michael A Garcia Award for her poem “Lo Siento, No Hablo Espanol</a>” as a junior at <a href="http://home.fredonia.edu/">Fredonia State University</a>.</p><p>She has been published on several blog sites including <a href="https://themighty.com/author/melissaguidarichards/#_=_" target="_blank">The Mighty</a>, <a href="https://spoonieauthorsnetwork.blog/" target="_blank">Spoonie Author’s Network</a>, and <a href="https://howdoesitfeeltobeadopted.com/" target="_blank">Adoptees Stories Connect</a>. Her blog, <a href="http://spoonie-mama.com/" target="_blank">Spoonie-Mama.com</a> is a safe place for mothers to read about honest experiences with motherhood, adoption, and chronic illness. It is a small community so far, but she has had people reach out to her for advice with their adopted children. She will also appear on the podcast, <a href="http://www.invisiblenotbroken.com" target="_blank">Invisible Not Broken</a>, in an interview discussing her battle with<a href="https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml" target="_blank"> bipolar disorder</a>, <a href="https://www.nimh.nih.gov/health/publications/postpartum-depression-facts/index.shtml" target="_blank">postpartum depression</a>, and <a href="https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml" target="_blank">post-traumatic stress disorder.</a></p><p>Melissa is a stay at home mom, married to a stubborn redhead, and has two sons (2 years old and 9 months old.) Her family also includes two dogs, two cats, and two axolotls due to her husband’s avid love for animals. Chronic pain has been a big part of her life since the age of five-years-old but she has not let it stop her from being a frequent member of a mom group in Monroe County as well as an avid member of several online mom groups with over. When Melissa has some free time, she loves to write children’s picture books.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ae126c01ae6cf941a600769/1524705208373/migraine-postpartum-bipolar-ptsd.mp3" length="85280310" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ae126c01ae6cf941a600769/1524705208373/migraine-postpartum-bipolar-ptsd.mp3" length="85280310" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Bipolar, PostPartum Depression, PTSD , and Migraines : An Invisible Illness Podcast</media:title></media:content></item><item><title>Faking it: From Disability Placards To Service Dogs: Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 23 Apr 2018 19:00:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/23/faking-it-diability-placard-fraud-service-dogs-transables-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ade02022b6a2820582178d1</guid><description>Kyros and I heavily debated doing this episode on Faking It All About | |
| Disability Placard and Service Animal Abuse of the System. Though we are | |
| not fans of calling people out this has become such an issue in our and | |
| others lives. The abuse of the system means life is so much more difficult | |
| for those who need these services. Take a listen and let us know what you | |
| think or if you have solutions we'd love to hear from you!</description><content:encoded><![CDATA[<img class="thumb-image" alt="faking-it-disability-podcast.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ade03d5562fa78a3c4143c2/1524499427449/faking-it-disability-podcast.jpg" data-image-dimensions="1365x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5ade03d5562fa78a3c4143c2" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ade03d5562fa78a3c4143c2/1524499427449/faking-it-disability-podcast.jpg?format=1000w" /> | |
| <p>Kyros and I heavily debated doing this episode on Faking It All About Disability Placard and Service Animal Abuse of the System. Though we are not fans of calling people out this has become such an issue in our and others lives. The abuse of the system means life is so much more difficult for those who need these services. Take a listen and let us know what you think or if you have solutions we'd love to hear from you!</p> | |
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| <p>People who fake having a disability</p><p> </p><ol><li>Reasons why people do it<ol><li>Want special treatment / to get around rules</li><li>Jealous of what they perceive as benefits (taking dogs with them, easier access, line skipping at Disneyland)</li><li>Feel entitled</li><li>Dislike something (Food) so say they have an allergy</li><li>Drug seeking</li><li>Miracles on flights first to enter sudden recovery in air for a sprint off</li><li> </li></ol></li><li>How they do it<ol><li>“Borrow” disabled car tags</li><li>Claim allergy when it is actually a preference</li><li>Fake illness/ pain to get drugs</li><li>Fake service animal vests</li><li> </li></ol></li><li>Service / Support / Therapy Animals, <ol><li><a href="https://therapetic.org/faq/">https://therapetic.org/faq/</a> </li><li><a href="https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/">https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/</a></li><li>Fake certification certificates online</li><li>Purchase fake service animal outfits online</li><li>Gets around “No Pets Allowed” rules<ol><li>Landlords can't even charge extra fees or a pet deposit.</li><li>So long as it was <a href="https://humanrights.iowa.gov/sites/default/files/media/Service%2520Animals-Housing-Landlords.doc">never documented being aggressive</a> and required no unreasonable accommodations. (Link is to document for landlords in Iowa re: service animals)</li></ol></li><li>Instant VIP<ol><li>Support animals fly free instead of $125-300 charge</li><li>Businesses don’t have to allow support animals, but most businesses aren’t aware of the differences.</li></ol></li><li>There are <a href="http://www.anythingpawsable.com/fake-service-dog-complications">no papers</a>, documents, certifications, vests, tags or special IDs required for Service Dogs in the United States. Under federal law, disabled individuals accompanied by Service Dogs are allowed access to places selling goods or services of any kind, including places offering entertainment, lodging and food.</li></ol></li><li>Transabled<ol><li>What is it?<ol><li>Been around since the early 20th century.</li><li>Originally called abasiophilia, then amputee identity disorder, body integrity identity disorder, and now finally transableism.</li><li> </li></ol></li><li>Examples<ol><li>People who amputate arms or legs</li><li>Poured bleach into her eyes to blind herself</li><li> </li></ol></li></ol></li><li>Effects of fakes and transabled on people with disabilities <ol><li>Creates atmosphere where people with invisible disabilities are assumed to be faking it</li><li>Creates distrust of service animals legitimacy</li><li>Backlash against legitimate service animals because so many people fake it that businesses assume everyone is cheating.<ol><li>Registered therapy dogs or emotional support animals increased 1000% between 2002 and 2012 in California</li><li>To take your emotional support animal on an airplane, all you need is a letter from a licensed mental health professional that’s on letterhead, signed, and less than a year old. You can buy those online for a few bucks: news investigations have found <a href="http://losangeles.cbslocal.com/2017/02/02/do-emotional-support-animals-pose-safety-risk-to-airline-passengers/">psychologists</a> offering to sell them to otherwise undiagnosed clients. Heck, most of us could probably counterfeit one using Photoshop.</li><li>Bright side: California currently has a <a href="https://www.cbsnews.com/news/service-dogs-laws-imposter-pets-illegal/">$1,000 fine and six months in jail lined up</a> for faking a service dog. In Florida, it's <a href="http://www.miamiherald.com/living/health-fitness/article144207564.html">$500 and two months in jail</a>. Other states have measures too, and in case it sounds like a slap on the wrist, that's per count.</li></ol></li><li> </li><li>Transabled take limited resources away from people who do not have any other option.</li><li> </li></ol></li></ol><p> </p><p> </p><p> </p><p>Links:</p><p><strong>Service animals</strong></p><ul><li><a href="http://www.cracked.com/personal-experiences-2156-healthy-people-are-faking-disabilities-to-get-service-dog.html">http://www.cracked.com/personal-experiences-2156-healthy-people-are-faking-disabilities-to-get-service-dog.html</a></li><li><a href="https://www.anythingpawsable.com/fake-service-dog-complications/">https://www.anythingpawsable.com/fake-service-dog-complications/</a></li><li><a href="https://creakyjoints.org/living-with-arthritis/how-people-faking-disability-to-get-perks-hurt-those-with-invisible-illness/">https://creakyjoints.org/living-with-arthritis/how-people-faking-disability-to-get-perks-hurt-those-with-invisible-illness/</a></li><li><a href="https://www.outsideonline.com/2236871/stop-faking-service-dogs">https://www.outsideonline.com/2236871/stop-faking-service-dogs</a></li><li><a href="https://m.huffpost.com/us/entry/7935996">https://m.huffpost.com/us/entry/7935996</a></li><li><a href="https://themighty.com/2017/11/response-the-sun-faking-disability-wheelchair-airport/">https://themighty.com/2017/11/response-the-sun-faking-disability-wheelchair-airport/</a></li></ul><p> </p><p><strong>Transabled</strong></p><ul><li><a href="http://nationalpost.com/news/canada/becoming-disabled-by-choice-not-chance-transabled-people-feel-like-impostors-in-their-fully-working-bodies">http://nationalpost.com/news/canada/becoming-disabled-by-choice-not-chance-transabled-people-feel-like-impostors-in-their-fully-working-bodies</a></li><li><a href="https://www.theodysseyonline.com/trans-abled-is-not-thing">https://www.theodysseyonline.com/trans-abled-is-not-thing</a></li><li><a href="http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11835546">http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11835546</a></li></ul>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>An Invisible Illness Podcast</itunes:subtitle><itunes:summary>Kyros and I heavily debated doing this episode on Faking It All About Disability Placard and Service Animal Abuse of the System. Though we are not fans of calling people out this has become such an issue in our and others lives. The abuse of the system means life is so much more difficult for those who need these services. Take a listen and let us know what you think or if you have solutions we'd love to hear from you!</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>50:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ade02022b6a2820582178d1/1524510044932/1500w/faking-it-disability-podcast.jpg"/><itunes:title>Faking it: From Disability Placards To Service Dogs</itunes:title><content:encoded><![CDATA[<p>People who fake having a disability</p><p><br></p><p>Reasons why people do itWant special treatment / to get around rulesJealous of what they perceive as benefits (taking dogs with them, easier access, line skipping at Disneyland)Feel entitledDislike something (Food) so say they have an allergyDrug seekingMiracles on flights first to enter sudden recovery in air for a sprint off<br></p><p>How they do it“Borrow” disabled car tagsClaim allergy when it is actually a preferenceFake illness/ pain to get drugsFake service animal vests<br></p><p>Service / Support / Therapy Animals, <a href="https://therapetic.org/faq/">https://therapetic.org/faq/</a> <a href="https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/">https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/</a>Fake certification certificates onlinePurchase fake service animal outfits onlineGets around “No Pets Allowed” rulesLandlords can't even charge extra fees or a pet deposit.So long as it was <a href="https://humanrights.iowa.gov/sites/default/files/media/Service%2520Animals-Housing-Landlords.doc">never documented being aggressive</a> and required no unreasonable accommodations. (Link is to document for landlords in Iowa re: service animals)Instant VIPSupport animals fly free instead of $125-300 chargeBusinesses don’t have to allow support animals, but most businesses aren’t aware of the differences.There are <a href="http://www.anythingpawsable.com/fake-service-dog-complications">no papers</a>, documents, certifications, vests, tags or special IDs required for Service Dogs in the United States. Under federal law, disabled individuals accompanied by Service Dogs are allowed access to places selling goods or services of any kind, including places offering entertainment, lodging and food.</p><p>TransabledWhat is it?Been around since the early 20th century.Originally called abasiophilia, then amputee identity disorder, body integrity identity disorder, and now finally transableism.<br>ExamplesPeople who amputate arms or legsPoured bleach into her eyes to blind herself<br></p><p>Effects of fakes and transabled on people with disabilities Creates atmosphere where people with invisible disabilities are assumed to be faking itCreates distrust of service animals legitimacyBacklash against legitimate service animals because so many people fake it that businesses assume everyone is cheating.Registered therapy dogs or emotional support animals increased 1000% between 2002 and 2012 in CaliforniaTo take your emotional support animal on an airplane, all you need is a letter from a licensed mental health professional that’s on letterhead, signed, and less than a year old. You can buy those online for a few bucks: news investigations have found <a href="http://losangeles.cbslocal.com/2017/02/02/do-emotional-support-animals-pose-safety-risk-to-airline-passengers/">psychologists</a> offering to sell them to otherwise undiagnosed clients. Heck, most of us could probably counterfeit one using Photoshop.Bright side: California currently has a <a href="https://www.cbsnews.com/news/service-dogs-laws-imposter-pets-illegal/">$1,000 fine and six months in jail lined up</a> for faking a service dog. In Florida, it's <a href="http://www.miamiherald.com/living/health-fitness/article144207564.html">$500 and two months in jail</a>. Other states have measures too, and in case it sounds like a slap on the wrist, that's per count.<br>Transabled take limited resources away from people who do not have any other option.<br></p><p><br></p><p><br></p><p><br></p><p>Links:</p><p><strong>Service animals</strong></p><p>http://www.cracked.com/personal-experiences-2156-healthy-people-are-faking-disabilities-to-get-service-dog.html</p><p>https://www.anythingpawsable.com/fake-service-dog-complications/</p><p>https://creakyjoints.org/living-with-arthritis/how-people-faking-disability-to-get-perks-hurt-those-with-invisible-illness/</p><p>https://www.outsideonline.com/2236871/stop-faking-service-dogs</p><p>https://m.huffpost.com/us/entry/7935996</p><p>https://themighty.com/2017/11/response-the-sun-faking-disability-wheelchair-airport/</p><p><br></p><p><strong>Transabled</strong></p><p>http://nationalpost.com/news/canada/becoming-disabled-by-choice-not-chance-transabled-people-feel-like-impostors-in-their-fully-working-bodies</p><p>https://www.theodysseyonline.com/trans-abled-is-not-thing</p><p>http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11835546</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ade02096d2a7392a599a201/1524499087534/Faking+it.mp3" length="47584984" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ade02096d2a7392a599a201/1524499087534/Faking+it.mp3" length="47584984" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Faking it: From Disability Placards To Service Dogs</media:title></media:content></item><item><title>Multiple Sclerosis Lab Rat Side Hustle Alternate Pain Management & A Healthy Dose of Controversy {A Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Wed, 18 Apr 2018 13:25:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/18/multiple-sclerosis-luca-robak-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ad64a4c352f53a9c9b44d88</guid><description>This week Lucas Robak was kind enough to talk about his experiences with | |
| Multiple Sclerosis, time as a lab rat, and some interesting views (his | |
| please don't sue us) on the medical system, charity and research | |
| organizations, and medicine in the US.</description><content:encoded><![CDATA[<p>This week <a target="_blank" href="http://www.lucasrobak.com/">Lucas Robak</a> was kind enough to talk about his experiences with <a href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269">Multiple Sclerosis</a>, time as a lab rat, and some interesting views (his please don't sue us) on the medical system, charity and research organizations, and medicine in the US.</p> | |
| <p><a target="_blank" href="http://www.lucasrobak.com/">Lucas Robak</a></p><p>The rule everything out diagnosis</p><p><a target="_blank" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752362/">Hypnotherapy for pain management</a> (also concerned for how my kids would use this for non-pain management)</p><p>The unexpected symptoms and issues with MS or what happens when you have a disorder that affects the ENTIRE body</p><p>Teen experience with chronic illness</p><p>Symptoms the create a breakup in the MOST unexpected ways.</p><p>It's not just women who spend years waiting for a diagnosis</p><p>The chronic illness medical carousel</p><p>Lab Rats. It can be a lucrative side hustle</p><p>A unique perspective full of legal disclaimers on the health system, what happens in research for illnesses, and how to handle these. If you would like Luke to speak publicly you can reach him here.</p><p>FDA (Federal Drug Administration) what has been approved, their practices, and some laws around the FDA again these are opinions. Ideas on how chemicals affect our health. (mice MS and <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pubmed/25313461">aspartame</a>)</p><p>BTW this pill could cause suicide (new painkillers with strange side effects)</p><p>A special Sesame Street Reference (this does not make this episode child-friendly).</p><p>We discussed the Polio was one of the last diseases cured ( <a target="_blank" href="http://www.healthinsurancequotes.org/7-deadly-diseases-cured-in-our-lifetime/?doing_wp_cron=1440019880.0393970012664794921875">here are a few that have been</a>). If you know of more please feel free to leave comments in the comment section. There have been a few and I will link, but I will say with advances and technology it surprises me with how few. Between nonprofits and organizations, it does beg the question of where the money goes? What is the carrot to find a cure? If there is a cure found does the organization have a dissolution plan? Basically, my rule for everything follow the money and ask good questions. Luke admits that he is HIGHLY controversial but the question he asks I would like to hear from heads of organizations. Please if you run an organization I would love to have you on the show. I have so many questions. If you are curious here is an interesting Snopes article about <a target="_blank" href="https://www.snopes.com/fact-check/salary-cap-2/">Komen Research CEO salary.</a></p><p>Lobbyists we talk so much about lobbyists. Also, ask how much the CEO of a non-profit makes.</p><p>Some of the pitfalls of have a capitalist based medical company.</p><p>Luke does prove that I absolutely interview someone I have VERY opposite views on.</p><p>Another Spoonie who runs their own business</p><p>I'm sorry is selfish, no really he makes an interesting case</p><p>His opening dating line is worth a listen</p><p>How and when to talk about your chronic illness in social and work situations. In the new social media world, it makes it all much easier than back when I was dating.</p><p>How personal accountability when there is a mistake can be a wonderful thing. I screwed up and this is how I'm going to fix it. This formula will make everyone's life so much better.</p><p><a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">Spoon Theory </a></p><p>I will remind you all again that his opinions are his own. We definitely had a lively and respectful discussion even if we did not agree. I did have to point out that my disorder if made worse by living not activity.</p><p>Favorite Help Books (Money is what is easiest to marriage but Luke believes that these will help with life in general)</p><p><a target="_blank" href="https://www.amazon.com/Think-Grow-Rich-Napoleon-Hill/dp/1420952501/ref=sr_1_1_sspa?ie=UTF8&qid=1523997882&sr=8-1-spons&keywords=think+and+grow+rich&psc=1">Think and Grow Rich</a></p><p><a target="_blank" href="https://www.amazon.com/dp/B00NGZIR92/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1">The Magic of Thinking Big </a></p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Chronic Illness Podcast</itunes:subtitle><itunes:summary>This week Lucas Robak was kind enough to talk about his experiences with Multiple Sclerosis, time as a lab rat, and some interesting views (his please don't sue us) on the medical system, charity and research organizations, and medicine in the US.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:01:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ad64a4c352f53a9c9b44d88/1524057907736/1500w/IMG_3832.PNG"/><itunes:title>Multiple Sclerosis Lab Rat Side Hustle Alternate Pain Management & A Healthy Dose of Controversy </itunes:title><content:encoded><![CDATA[<p>The rule everything out diagnosis</p><p><a target="_blank" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752362/">Hypnotherapy for pain management</a> (also concerned for how my kids would use this for non-pain management)</p><p>The unexpected symptoms and issues with MS or what happens when you have a disorder that affects the ENTIRE body</p><p>Teen experience with chronic illness</p><p>Symptoms the create a breakup in the MOST unexpected ways.</p><p>It's not just women who spend years waiting for a diagnosis</p><p>The chronic illness medical carousel</p><p>Lab Rats. It can be a lucrative side hustle</p><p>A unique perspective full of legal disclaimers on the health system, what happens in research for illnesses, and how to handle these. If you would like Luke to speak publicly you can reach him here.</p><p>FDA (Federal Drug Administration) what has been approved, their practices, and some laws around the FDA again these are opinions. Ideas on how chemicals affect our health. (mice MS and <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pubmed/25313461">aspartame</a>)</p><p>BTW this pill could cause suicide (new painkillers with strange side effects)</p><p>A special Sesame Street Reference (this does not make this episode child-friendly).</p><p>We discussed the Polio was one of the last diseases cured ( <a target="_blank" href="http://www.healthinsurancequotes.org/7-deadly-diseases-cured-in-our-lifetime/?doing_wp_cron=1440019880.0393970012664794921875">here are a few that have been</a>). If you know of more please feel free to leave comments in the comment section. There have been a few and I will link, but I will say with advances and technology it surprises me with how few. Between nonprofits and organizations, it does beg the question of where the money goes? What is the carrot to find a cure? If there is a cure found does the organization have a dissolution plan? Basically, my rule for everything follow the money and ask good questions. Luke admits that he is HIGHLY controversial but the question he asks I would like to hear from heads of organizations. Please if you run an organization I would love to have you on the show. I have so many questions. If you are curious here is an interesting Snopes article about <a target="_blank" href="https://www.snopes.com/fact-check/salary-cap-2/">Komen Research CEO salary.</a></p><p>Lobbyists we talk so much about lobbyists. Also, ask how much the CEO of a non-profit makes.</p><p>Some of the pitfalls of have a capitalist based medical company.</p><p>Luke does prove that I absolutely interview someone I have VERY opposite views on.</p><p>Another Spoonie who runs their own business</p><p>I'm sorry is selfish, no really he makes an interesting case</p><p>His opening dating line is worth a listen</p><p>How and when to talk about your chronic illness in social and work situations. In the new social media world, it makes it all much easier than back when I was dating.</p><p>How personal accountability when there is a mistake can be a wonderful thing. I screwed up and this is how I'm going to fix it. This formula will make everyone's life so much better.</p><p><a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">Spoon Theory </a></p><p>I will remind you all again that his opinions are his own. We definitely had a lively and respectful discussion even if we did not agree. I did have to point out that my disorder if made worse by living not activity.</p><p>Favorite Help Books (Money is what is easiest to marriage but Luke believes that these will help with life in general)</p><p><a target="_blank" href="https://www.amazon.com/Think-Grow-Rich-Napoleon-Hill/dp/1420952501/ref=sr_1_1_sspa?ie=UTF8&qid=1523997882&sr=8-1-spons&keywords=think+and+grow+rich&psc=1">Think and Grow Rich</a></p><p><a target="_blank" href="https://www.amazon.com/dp/B00NGZIR92/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1">The Magic of Thinking Big </a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ad65b55562fa73d56a2252a/1523997775262/MS-Chronic-Illness-Podcast-Luke.mp3" length="87348581" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ad65b55562fa73d56a2252a/1523997775262/MS-Chronic-Illness-Podcast-Luke.mp3" length="87348581" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Multiple Sclerosis Lab Rat Side Hustle Alternate Pain Management & A Healthy Dose of Controversy </media:title></media:content></item><item><title>Polycythemia Vera: Vampires Would Love Her {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Tue, 10 Apr 2018 17:49:44 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/10/polycythemia-vera-vampires-would-love-her-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5acce87a8a922dc773216426</guid><description>Hello everyone thank you for being patient this week I was regular sick. I | |
| truly believe that those of us with chronic illness should be given a pass | |
| on the flu but hey no-one asked me. This week I am talking with the author | |
| of You Are Not Your Diagnosis Lyn Thompsan about her polycythemia vera, a | |
| blood disorder that even after 6 months of doing this chronic illness | |
| podcast I have never heard of. </description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5accf6b0aa4a998f3fb72a7a/5accf6b188251b5348b72f9c/1523382345337/Polycythemia-Vera-chronic-illness-blog-invisible-illness-podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Polycythemia: Invisible Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5accf6b0aa4a998f3fb72a7a/5accf6b188251b5348b72f9c/1523382345337/Polycythemia-Vera-chronic-illness-blog-invisible-illness-podcast.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5accf6b0aa4a998f3fb72a7a/5accf6b36d2a73d3a055985e/1523382369270/Lyn+Delmastro-Thomson+011.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="You Are Not Your Diagnosis Author Interview" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5accf6b0aa4a998f3fb72a7a/5accf6b36d2a73d3a055985e/1523382369270/Lyn+Delmastro-Thomson+011.jpg?format=1000w" /><br> | |
| <h1><a target="_blank" href="https://bodytalkportland.com/you-are-not-your-diagnosis/"><em>You Are Not Your Diagnosis</em></a></h1><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850">polycythemia vera</a></p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>25</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>I was a graduate student pursuing a career in academia but I was completely miserable on my path.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I don't know that I'd be doing much different other than maybe having a bit more energy in general</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>That through alternative healing methods, I'm able to live a normal life- one that I didn't think was possible back when I was diagnosed in 2004 (which was actually a misdiagnosis)</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>If doctors would understand the power of their words and their attitudes in how people get better or stay sick. If alternative healing was more embraced by people, especially doctors</p><p><strong>Do you have any life hacks? </strong>*</p><p>Tons. One of my favorites is self-care, especially something called <a target="_blank" href="https://www.bodytalksystem.com/seminars/courses/description.cfm?id=53">BodyTalk Access</a>. Others include focusing on my mindset/thoughts</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I've always had pretty good support. Initially, the challenge was my diagnosis became the topic of EVERY conversation and I felt that was who I had become. But now many people don't see me that way. Close family knows some of my challenges.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? *</strong></p><p>I've never had someone say that to me but I don't tend to want people to know my health history</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>At times it put me in the position of feeling dependent on my parents for help, support, etc. Living with a husband who was diagnosed with RA and Sjogren's last year (which isn't something he's yet told many people about) can be challenging on days when I feel tired and he's hurting.</p><p><strong>What is your best coping mechanism? *</strong></p><p>taking time to center myself, breathe, ground, do self-care</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>Fearful would be that things could get worse. Hopeful that the tools that have already given me so much of my health back and completely eliminate the disease</p><p><strong>What is your favorite swear word?</strong></p><p>I didn't use to feel this way but now it is fuck</p><p><strong>Any questions you think we should add to this list?</strong></p><p>What is the hardest and/or best lesson your condition has taught you?</p><p>The best lesson is that being scared of the unknown and stuffing down my feelings, fears, etc didn't help anything but made things worse. I learned my body has a lot of wisdom that I can tap into</p><p><a href="https://bodytalkportland.com/you-are-not-your-diagnosis/"><strong>You Are Not Your Diagnosis</strong></a></p><p><a target="_blank" href="https://www.mayoclinic.org/tests-procedures/biofeedback/about/pac-20384664"><strong>Bio-Feedback</strong></a></p><p><a href="https://www.bodytalksystem.com/"><strong>Body Talk</strong></a></p><p><a target="_blank" href="https://itunes.apple.com/us/app/calm/id571800810?mt=8"><strong>IOS Calm app</strong></a></p><p><a target="_blank" href="https://www.apple.com/watch/"><strong>Apple Watch</strong></a></p><p><a target="_blank" href="https://insighttimer.com/"><strong>Insight Timer</strong></a></p><p> </p><iframe allowfullscreen src="https://s3.amazonaws.com/embed.animoto.com/play.html?w=swf/production/vp1&e=1523467533&f=tYeuOgFVqThlQWhrH1pXWQ&d=0&m=p&r=360p&volume=100&start_res=0p&i=m&ct=To%20Hear%20The%20Interview&cu=http://invisiblenotbroken.com/home/2018/4/10/polycythemia-vera-vampires-would-love-her-chronic-illness-podcast&asset_domain=s3-p.animoto.com&animoto_domain=animoto.com&options=" width="640" frameborder="0" id="vp1tYeuO" title="Video Player" height="360"></iframe>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Blood Disorder: Invisible Illness Illness Podcast</itunes:subtitle><itunes:summary>Hello everyone thank you for being patient this week I was regular sick. I truly believe that those of us with chronic illness should be given a pass on the flu but hey no-one asked me. This week I am talking with the author of You Are Not Your Diagnosis Lyn Thompsan about her polycythemia vera, a blood disorder that even after 6 months of doing this chronic illness podcast I have never heard of. | |
| She could be a vampire’s dream | |
| Her blood does not have a switch off on platelets | |
| See breast reduction surges save lives (preop is a great way to get diagnosis). | |
| Vampires in lab coats | |
| Blind dates with doctors (they never look like they do on Grays Anatomy) | |
| The Inquisition can learn a thing or two from medical tests | |
| OK wasteful vampires. Take all the extra blood and throw them away. | |
| Who you are before illness (BI) is not who you end up after sick (AS) | |
| Being sick can make you more private. Which part is you and which part is the disorder. | |
| You Are Not Your Diagnosis book in progress | |
| What it’s like to be wrongly diagnosed with a possibly fatal disorder | |
| Dealing with depression and loss | |
| Some of the upsides of chronic illness: when your body and situations makes you reevaluate your life goals | |
| Masters degree as a way to not adult | |
| Time cost of having a chronic illness (thank you insurance companies) | |
| Huge thank you to moms of chronically ill moms | |
| </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>41:20</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5acce87a8a922dc773216426/1523468087138/1500w/Polycythemia-Vera-chronic-illness-blog-invisible-illness-podcast.jpg"/><itunes:title>Polycythemia Vera: Vampires Would Love Her</itunes:title><content:encoded><![CDATA[<h1><a target="_blank" href="https://bodytalkportland.com/you-are-not-your-diagnosis/"><em>You Are Not Your Diagnosis</em></a></h1><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850">polycythemia vera</a></p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>25</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>I was a graduate student pursuing a career in academia but I was completely miserable on my path.</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I don't know that I'd be doing much different other than maybe having a bit more energy in general</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>That through alternative healing methods, I'm able to live a normal life- one that I didn't think was possible back when I was diagnosed in 2004 (which was actually a misdiagnosis)</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>If doctors would understand the power of their words and their attitudes in how people get better or stay sick. If alternative healing was more embraced by people, especially doctors</p><p><strong>Do you have any life hacks? </strong>*</p><p>Tons. One of my favorites is self-care, especially something called <a target="_blank" href="https://www.bodytalksystem.com/seminars/courses/description.cfm?id=53">BodyTalk Access</a>. Others include focusing on my mindset/thoughts</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I've always had pretty good support. Initially, the challenge was my diagnosis became the topic of EVERY conversation and I felt that was who I had become. But now many people don't see me that way. Close family knows some of my challenges.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? *</strong></p><p>I've never had someone say that to me but I don't tend to want people to know my health history</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>At times it put me in the position of feeling dependent on my parents for help, support, etc. Living with a husband who was diagnosed with RA and Sjogren's last year (which isn't something he's yet told many people about) can be challenging on days when I feel tired and he's hurting.</p><p><strong>What is your best coping mechanism? *</strong></p><p>taking time to center myself, breathe, ground, do self-care</p><p><strong>What are you the most concerned about and the hopeful for in the future? *</strong></p><p>Fearful would be that things could get worse. Hopeful that the tools that have already given me so much of my health back and completely eliminate the disease</p><p><strong>What is your favorite swear word?</strong></p><p>didn't used to feel this way but now it is fuck</p><p><strong>Any questions you think we should add to this list?</strong></p><p>What is the hardest and/or best lesson your condition has taught you?</p><p>Best lesson is that being scared of the unknown and stuffing down my feelings, fears, etc didn't help anything but made things worse. I learned my body has a lot of wisdom that I can tap into</p><p><a href="https://bodytalkportland.com/you-are-not-your-diagnosis/"><strong>You Are Not Your Diagnosis</strong></a></p><p><a target="_blank" href="https://www.mayoclinic.org/tests-procedures/biofeedback/about/pac-20384664"><strong>Bio-Feedback</strong></a></p><p><a href="https://www.bodytalksystem.com/"><strong>Body Talk</strong></a></p><p><a target="_blank" href="https://itunes.apple.com/us/app/calm/id571800810?mt=8"><strong>IOS Calm app</strong></a></p><p><a target="_blank" href="https://www.apple.com/watch/"><strong>Apple Watch</strong></a></p><p><a target="_blank" href="https://insighttimer.com/"><strong>Insight Timer</strong></a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5accf5c8f950b7425272a1a2/1523381886984/polycythemia.mp3" length="58815970" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5accf5c8f950b7425272a1a2/1523381886984/polycythemia.mp3" length="58815970" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Polycythemia Vera: Vampires Would Love Her</media:title></media:content></item><item><title>Secret Spoonie Our Newest Blogger About Life In The Chronic Illness Closet {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 02 Apr 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/4/2/secret-spoonie-our-newest-blogger-about-life-in-the-chronic-illness-closet-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ac0203c8a922d9f463d1c67</guid><description>Introducing Hidden In Plain Sight a monthly column from our secret spoonie | |
| about life from inside the chronic illness closet.</description><content:encoded><![CDATA[<p><strong>Hidden in Plain Sight</strong></p><p><strong> </strong></p><p><strong>The Life of a Secret Spoonie: Part One: Introduction</strong></p><p><strong> </strong></p><p>Hello everyone and welcome to Hidden in Plain Sight. This will be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. I am not entirely closeted, as some of my friends and family know about my medical conditions, but for the most part I live my life in a state of semi-secret. I have the utmost respect for those who live in the spotlight; who bravely wear their illness on their sleeves. There are times when I wish I could step into the light with them. But that’s just not me, not right now; maybe not ever. I hope that what I write here will resonate with some of you who might be in a similar position.</p><p> </p><p>Let me introduce myself. I’m a secret spoonie: a (somewhat) closeted chronically ill person. I’ve been struggling with various invisible illnesses for the past thirty-five years, but only some people in my life know about what I’ve been though; what I still go through. I have been hiding in plain sight, for better or for worse, through sickness and in health, for more than three decades. Mostly: sickness. If anyone outright asks, in person, I will tell them the truth about my medical conditions, but I only discuss it in any depth with close friends and family. I will also (very occasionally) post something (very vague) on social media, but that is a rare, and often cryptic occurrence.</p><p> </p><p>My story begins when I was a teenager. At the onset of puberty, I began to suffer severe cramping and abdominal pain, magnitudes greater than that of my peers. Thankfully, I had a mother who was both sensitive to my behavior and also highly aware of women’s health issues. She was also proactive, and took me to a Gynecologist who specialized in pain when I was fourteen. By that point, I had been suffering for about two years, mostly in silence. The doctor examined me and gave me two prescriptions: eight hundred milligram ibuprofen for pain, and chloral hydrate (otherwise known as “knockout drops”) to take during those nights when the pain prevented me from sleeping. I continued like this for another five years: suffer, medicate, suffer, medicate, rinse, repeat…</p><p> </p><p>At nineteen, I started having more extreme symptoms, so I went to another doctor in the same practice who was also a surgeon. This time I lucked out: she happened to be one of the most prominent pelvic pain specialists in my area. She diagnosed me with “suspected endometriosis,” since a true diagnoses requires exploratory surgery. Two years later I had that surgery, a few days after my twenty-second birthday. The diagnosis: Stage Two Endometriosis. Photographs taken during my first surgery showed that the disease had been covering multiple organs in my abdomen. The excised what they could, sewed me up, and gave me some more, stronger prescriptions.</p><p> </p><p>Thus began my journey of living life with invisible illness. Over the last twenty-eight years, I have had eleven major surgeries, and a handful of minor ones. I have had dozens of other (often invasive) medical procedures, and been hospitalized for weeks at time. I’ve had three organs removed, along with some of my spine. I have stitches in my skin and screws in my bones. There is a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. Throughout my life so far, I have done many things that a “normal” person does: I went to College, earned three degrees, bought a home, got a job, made some friends, lost some loved ones, got a career, got married, and discovered the meaning of life (just kidding on that last one), not necessarily in that order. I can only describe how I feel as like being naked and overdressed at the same time; always: both exposed and covered up. If there’s anything I’ve learned about dealing with my illnesses, it’s that there is no one way to deal with having a chronic illness (or six) and that, as sappy as it sounds, I’m still surprisingly grateful for everything I have and for everything I don’t. If you’re at all like me, you’ll probably understand the meaning of that last one.</p><p> </p><p>Take care for now and hopefully I’ll see you again soon.</p><p> </p><p><em>Secret Spoonie</em></p><p> </p><p>If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: <a target="_blank" href="mailto:[email protected]">[email protected]</a></p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Life From Inside the Chronic Illness Closet</itunes:subtitle><itunes:summary>Introducing Hidden In Plain Sight a monthly column from our secret spoonie about life from inside the chronic illness closet.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>05:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ac0203c8a922d9f463d1c67/1522675802065/1500w/IMG_0223.jpg"/><itunes:title>Hidden In Plain Site</itunes:title><content:encoded><![CDATA[<p>Introducing Hidden In Plain Sight a monthly column from our secret spoonie about life from inside the chronic illness closet.</p><p><strong>Hidden in Plain Sight</strong></p><p><strong> </strong></p><p><strong>The Life of a Secret Spoonie: Part One: Introduction</strong></p><p><strong> </strong></p><p>Hello everyone and welcome to Hidden in Plain Sight. This will be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. I am not entirely closeted, as some of my friends and family know about my medical conditions, but for the most part I live my life in a state of semi-secret. I have the utmost respect for those who live in the spotlight; who bravely wear their illness on their sleeves. There are times when I wish I could step into the light with them. But that’s just not me, not right now; maybe not ever. I hope that what I write here will resonate with some of you who might be in a similar position.</p><p> </p><p>Let me introduce myself. I’m a secret spoonie: a (somewhat) closeted chronically ill person. I’ve been struggling with various invisible illnesses for the past thirty-five years, but only some people in my life know about what I’ve been though; what I still go through. I have been hiding in plain sight, for better or for worse, through sickness and in health, for more than three decades. Mostly: sickness. If anyone outright asks, in person, I will tell them the truth about my medical conditions, but I only discuss it in any depth with close friends and family. I will also (very occasionally) post something (very vague) on social media, but that is a rare, and often cryptic occurrence.</p><p> </p><p>My story begins when I was a teenager. At the onset of puberty, I began to suffer severe cramping and abdominal pain, magnitudes greater than that of my peers. Thankfully, I had a mother who was both sensitive to my behavior and also highly aware of women’s health issues. She was also proactive, and took me to a Gynecologist who specialized in pain when I was fourteen. By that point, I had been suffering for about two years, mostly in silence. The doctor examined me and gave me two prescriptions: eight hundred milligram ibuprofen for pain, and chloral hydrate (otherwise known as “knockout drops”) to take during those nights when the pain prevented me from sleeping. I continued like this for another five years: suffer, medicate, suffer, medicate, rinse, repeat…</p><p> </p><p>At nineteen, I started having more extreme symptoms, so I went to another doctor in the same practice who was also a surgeon. This time I lucked out: she happened to be one of the most prominent pelvic pain specialists in my area. She diagnosed me with “suspected endometriosis,” since a true diagnoses requires exploratory surgery. Two years later I had that surgery, a few days after my twenty-second birthday. The diagnosis: Stage Two Endometriosis. Photographs taken during my first surgery showed that the disease had been covering multiple organs in my abdomen. The excised what they could, sewed me up, and gave me some more, stronger prescriptions.</p><p> </p><p>Thus began my journey of living life with invisible illness. Over the last twenty-eight years, I have had eleven major surgeries, and a handful of minor ones. I have had dozens of other (often invasive) medical procedures, and been hospitalized for weeks at time. I’ve had three organs removed, along with some of my spine. I have stitches in my skin and screws in my bones. There is a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. Throughout my life so far, I have done many things that a “normal” person does: I went to College, earned three degrees, bought a home, got a job, made some friends, lost some loved ones, got a career, got married, and discovered the meaning of life (just kidding on that last one), not necessarily in that order. I can only describe how I feel as like being naked and overdressed at the same time; always: both exposed and covered up. If there’s anything I’ve learned about dealing with my illnesses, it’s that there is no one way to deal with having a chronic illness (or six) and that, as sappy as it sounds, I’m still surprisingly grateful for everything I have and for everything I don’t. If you’re at all like me, you’ll probably understand the meaning of that last one.</p><p> </p><p>Take care for now and hopefully I’ll see you again soon.</p><p> </p><p><em>Secret Spoonie</em></p><p> </p><p>If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: <a target="_blank" href="mailto:[email protected]">[email protected]</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ac024a40e2e721df013a3d0/1522541752892/secret+spoonie.mp3" length="6958101" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ac024a40e2e721df013a3d0/1522541752892/secret+spoonie.mp3" length="6958101" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Hidden In Plain Site</media:title></media:content></item><item><title>Chronic Migraine Interview With Kevan From Made In California {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Tue, 27 Mar 2018 13:07:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/chronic-migraine-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ab96f3f2b6a285ee7617b73</guid><description>An interview with Kevan, the owner of Made In California who suffers from | |
| chronic migraines.This week is near and dear to my heart, chronic migraines | |
| are not unknown in my house.We really went into the weeds on what it is | |
| like to being a student, female, and having an invisible and chronic | |
| illness. I really would love for more teachers and educators to listen | |
| there is a lot in here about things a child with chronic illness deal with. | |
| We also discussed isolation and chronic illness, technology and chronic | |
| illness, medical marijuana and migraines, pugs and other support and | |
| snorting animals, and the inspiration behind Kevan's business Made In | |
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| <img class="thumb-image" alt="made-in-california-logo-chronic-migraine-invisible-illness-podcast.png" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab973ce1ae6cffc65f8d15d/1522103283421/made-in-california-logo-chronic-migraine-invisible-illness-podcast.png" data-image-dimensions="465x124" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5ab973ce1ae6cffc65f8d15d" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab973ce1ae6cffc65f8d15d/1522103283421/made-in-california-logo-chronic-migraine-invisible-illness-podcast.png?format=1000w" /> | |
| <h1>An interview with Kevan, the owner of <a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a> who suffers from chronic migraines.This week is near and dear to my heart, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201">chronic migraines</a> are not unknown in my house.</h1><h3>We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business <a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a></h3><hr /><p> </p><p><a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a></p><p>When your chronic illness really and literally is ALL in your head</p><p>Migraines from age 5</p><p>what it’s like to have head pain all day</p><p>Some of the things a migraine contains not including headaches</p><p><strong>What Can Trigger a Migraine: Trigger: sensory overload, weather, chemicals, foods</strong></p><p>When chemicals and chemical scents trigger migraines and you can’t have scented products….start a business and MAKE IT BETTER</p><p>I will be ordering sooo many of these how can you beat the name? <a target="_blank" href="https://www.madeincalifornia.co/shop/no4-naked-and-unlaid-unisex-solid-cologne">Naked and Unlaid?</a></p><p>Entrepreneurs and chronic illness</p><p>Technology, chronic illness, and life opening benefits</p><p>Living your life finding out what is still possible in your life and in the boundaries of your illness and finding a purpose</p><p>Chronic illness and isolation (think <a target="_blank" href="https://www.amazon.com/Yellow-Wallpaper-Charlotte-Perkins-Gilman/dp/1516943864/ref=sr_1_1?ie=UTF8&qid=1522104017&sr=8-1&keywords=the+yellow+wallpaper">Yellow Wallpaper </a>English majors)</p><p>Social media and finding your chronic illness community</p><p>Schooling impact on chronically ill children</p><p>the life and mental saving benefits of pugs</p><p>Choosing other paths than western medicine (We are NOT doctors don’t sue us, ask your medical professional for advice)</p><p><a target="_blank" href="http://www.medicalmedium.com/medical-medium-blog">Medical Medium</a> (Link)</p><p><a href="http://invisiblenotbroken.com/home?tag=Medical%20Marijuana">Medical Marijuana</a>, other herbs, and nutrition (which can mean salty fries and milkshake) for migraines</p><p>Riki Lake documentary <a target="_blank" href="http://www.imdb.com/title/tt7968976/">Weed The People</a></p><p> </p><iframe allowfullscreen src="https://s3.amazonaws.com/embed.animoto.com/play.html?w=swf/production/vp1&e=1522270194&f=g7xgwDtEvwEMde1kPEvbOQ&d=0&m=p&r=360p&volume=100&start_res=0p&i=m&ct=Click%20To%20Listen%20To%20The%20Entire%20Episode&cu=http://invisiblenotbroken.com/home/2018/chronic-migraine-invisible-illness-podcast&asset_domain=s3-p.animoto.com&animoto_domain=animoto.com&options=" width="640" frameborder="0" id="vp1g7xgw" title="Video Player" height="360"></iframe>]]></content:encoded><itunes:author>Monica Michelle</itunes:author><itunes:summary>An interview with Kevan, the owner of Made In California who suffers from chronic migraines. This week is near and dear to my heart, chronic migraines are not unknown in my house. | |
| We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business Made In California</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>1:05:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ab96f3f2b6a285ee7617b73/1522270399362/1500w/IMG_6111.JPG"/><content:encoded><![CDATA[<h1>An interview with Kevan, the owner of <a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a> who suffers from chronic migraines.This week is near and dear to my heart, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201">chronic migraines</a> are not unknown in my house.</h1><h3>We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business <a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a></h3><p><a target="_blank" href="https://www.madeincalifornia.co/">Made In California</a></p><p>When your chronic illness really and literally is ALL in your head</p><p>Migraines from age 5</p><p>what it’s like to have head pain all day</p><p>Some of the things a migraine contains not including headaches</p><p><strong>What Can Trigger a Migraine: Trigger: sensory overload, weather, chemicals, foods</strong></p><p>When chemicals and chemical scents trigger migraines and you can’t have scented products….start a business and MAKE IT BETTER</p><p>I will be ordering sooo many of these how can you beat the name? <a target="_blank" href="https://www.madeincalifornia.co/shop/no4-naked-and-unlaid-unisex-solid-cologne">Naked and Unlaid?</a></p><p>Entrepreneurs and chronic illness</p><p>Technology, chronic illness, and life opening benefits</p><p>Living your life finding out what is still possible in your life and in the boundaries of your illness and finding a purpose</p><p>Chronic illness and isolation (think <a target="_blank" href="https://www.amazon.com/Yellow-Wallpaper-Charlotte-Perkins-Gilman/dp/1516943864/ref=sr_1_1?ie=UTF8&qid=1522104017&sr=8-1&keywords=the+yellow+wallpaper">Yellow Wallpaper </a>English majors)</p><p>Social media and finding your chronic illness community</p><p>Schooling impact on chronically ill children</p><p>the life and mental saving benefits of pugs</p><p>Choosing other paths than western medicine (We are NOT doctors don’t sue us, ask your medical professional for advice)</p><p><a target="_blank" href="http://www.medicalmedium.com/medical-medium-blog">Medical Medium</a> (Link)</p><p><a href="/home?tag=Medical%20Marijuana">Medical Marijuana</a>, other herbs, and nutrition (which can mean salty fries and milkshake) for migraines</p><p>Riki Lake documentary <a target="_blank" href="http://www.imdb.com/title/tt7968976/">Weed The People</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab96f59352f5393b4b40c17/1522102374749/Chronic+Migraine.mp3" length="93518912" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab96f59352f5393b4b40c17/1522102374749/Chronic+Migraine.mp3" length="93518912" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Tue, 20 Mar 2018 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/3/20/multiple-sclerosis-lauren-selfridge-chronic-illness-podcast-invisible-illness-blog-nwio</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ab0522c352f53a1f3e6da89</guid><description>One of my favorite interviews with Lauren Selfridge a San Francisco Bay | |
| Area Therapist and host of This Is Not What I Ordered a chronic illness | |
| podcast. Lauren and Monica talk about Lauren's Multiple Sclerosis.</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>I am an extrovert. My body is an Introvert<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Lauren Selfridge</figcaption> | |
| </figure> | |
| <img class="thumb-image" alt="this-is-not-what-i-ordered-lauren-selfridge-chronic-illness-podcast.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab06ce68a922d6ee3b41b26/1521511686908/this-is-not-what-i-ordered-lauren-selfridge-chronic-illness-podcast.jpg" data-image-dimensions="600x600" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5ab06ce68a922d6ee3b41b26" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab06ce68a922d6ee3b41b26/1521511686908/this-is-not-what-i-ordered-lauren-selfridge-chronic-illness-podcast.jpg?format=1000w" /> | |
| <h2 class="text-align-center"><strong>Show notes from Remitting MS and Interview With Lauren Selfridge from <a target="_blank" href="https://laurenselfridge.com/listen">This Is Not What I Ordered </a>A Chronic Illness Podcast</strong></h2> | |
| <p>Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called <a target="_blank" href="https://laurenselfridge.com/listen">This Is Not What I Ordered.</a></p><p>To be VERY clear Lauren is on the calmer side of the spectrum of <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274">MS</a> that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered </p><p>Great tech explanation of <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274">MS</a></p><p>Some VERY good information about <a target="_blank" href="http://www.mayo.edu/research/centers-programs/center-multiple-sclerosis-cns-demyelinating-diseases/developing-new-symptomatic-therapies-ms">MS </a>diagnosis and tests</p><p>Stress is the doctors new go to instead of “hysteria”</p><p>Don’t be afraid to DEMAND a test that you know you need</p><p><a target="_blank" href="http://www.imdb.com/title/tt0088258/">Spinal Tap</a> is much more fun as a movie than as a medical test, click here to see what I mean. <a target="_blank" href="https://www.mayoclinic.org/tests-procedures/lumbar-puncture/about/pac-20394631">HERE</a></p><p>Sorry real life barking pug decided to be a “helper dog” and be a part of the interview</p><p>The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children</p><p>Call to Drs. for interviewees I would love to see the other side of sick world.</p><p>Yes, Monica is a complete <a target="_blank" href="http://www.neilgaiman.com/">Neil Gaiman.</a> There is no denying it. Someday <a target="_blank" href="http://www.bbc.co.uk/programmes/b006q2x0">Dr. Who </a>will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.</p><p>All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.</p><p>What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.</p><h3>Changing your views of what a successful fulfilling life to redefine not around what the body will do.</h3><p>Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!</p><p><strong>Some great career choices for the chronic spoonie</strong></p><p>Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.</p><p>Spoonie decisions for one’s work and social life, hint a bit like <a target="_blank" href="http://www.imdb.com/title/tt0084707/">Sophie's Choice</a></p><p>Chronic illness and the kick in the tail for life experiences</p><p>Public transportation and chronic illness Thank you Uber and Lyft</p><h2><a target="_blank" href="https://accessibility.uber.com/">Uber’s new medical service</a></h2><p>The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious </p><p>Google Image search is not always your friend when you have a chronic illness</p><p>The calming effects of watching aquariums or paint on YouTube</p><p>What it is like to hope on horizons with a well-funded disorder</p><p>Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group <a target="_blank" href="https://www.facebook.com/thisisnotwhatiordered">This Is Not What I Ordered</a></p><p>The importance of social media and access to others for chronic illness and for teens.</p><p>The physical and social isolation of chronic illness </p><p>The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue</p><p><a target="_blank" href="https://www.amazon.com/Loving-What-Four-Questions-Change/dp/1400045371/ref=sr_1_1?ie=UTF8&qid=1521505678&sr=8-1&keywords=loving+what+is">Loving What Is</a> Byron Katie. My new favorite quote, <em>"It’s not your job to like me it’s mine.”</em></p><p>"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. <a target="_blank" href="https://www.amazon.com/Till-We-Have-Faces-Retold-ebook/dp/B01EFM8NMK/ref=sr_1_1?s=books&ie=UTF8&qid=1521505726&sr=1-1&keywords=til+we+have+faces+by+c.s.+lewis">Til We Have Faces </a></p><p>Chronic illness is transformative and not always in a bad way.</p> | |
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| <p>Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.</p> | |
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| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab16243562fa785b8988ecf/1521574898057/multiple-sclerosis-chronic-illness-podcast-this-is-not-what-i-ordered-invisible-illness-podcast-invisible-not-broken-.jpg" data-image-dimensions="399x600" data-image-focal-point="0.5,0.5" alt="This Week On Invisible Not Broken (A Chronic Illness Podcast) Interview With Lauren Selfridge About Life With Multiple Sclerosis" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab16243562fa785b8988ecf/1521574898057/multiple-sclerosis-chronic-illness-podcast-this-is-not-what-i-ordered-invisible-illness-podcast-invisible-not-broken-.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab162978a922d3d6bdd4234/1521574916052/CS-Lewis-Quote.jpg" data-image-dimensions="399x600" data-image-focal-point="0.5,0.5" alt="CS Lewis Quote With Surreal Black and White Photography" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab162978a922d3d6bdd4234/1521574916052/CS-Lewis-Quote.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab162a503ce649d498fabc8/1521574934240/I-Am-An-Extrovert-My-Body-Is-An-Introvert-Lauren-Selfridge.jpg" data-image-dimensions="399x600" data-image-focal-point="0.5,0.5" alt="Lauren Selfridge Quote" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5ab1624303ce649d498f93ec/5ab162a503ce649d498fabc8/1521574934240/I-Am-An-Extrovert-My-Body-Is-An-Introvert-Lauren-Selfridge.jpg?format=1000w" /><br>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Multiple Sclerosis Lauren Selfridge This Is Not What I Ordered A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called This Is Not What I Ordered. | |
| To be VERY clear Lauren is on the calmer side of the spectrum of MS that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered | |
| Great tech explanation of MS | |
| Some VERY good information about MS diagnosis and tests | |
| Stress is the doctors new go to instead of “hysteria” | |
| Don’t be afraid to DEMAND a test that you know you need | |
| Spinal Tap is much more fun as a movie than as a medical test, click here to see what I mean. HERE | |
| Sorry real life barking pug decided to be a “helper dog” and be a part of the interview | |
| The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children | |
| Call to Drs. for interviewees I would love to see the other side of sick world. | |
| Yes, Monica is a complete Neil Gaiman. There is no denying it. Someday Dr. Who will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days. | |
| All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times. | |
| What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices. | |
| Changing your views of what a successful fulfilling life to redefine not around what the body will do. | |
| Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad! | |
| Some great career choices for the chronic spoonie | |
| Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child. | |
| Spoonie decisions for one’s work and social life, hint a bit like Sophie's Choice | |
| Chronic illness and the kick in the tail for life experiences | |
| Public transportation and chronic illness Thank you Uber and Lyft | |
| Uber’s new medical service | |
| Rodent infusions let the Tom and Jerry jokes fly | |
| The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious | |
| Google Image search is not always your friend when you have a chronic illness | |
| The calming effects of watching aquariums or paint on YouTube | |
| What it is like to hope on horizons with a well-funded disorder | |
| Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group This Is Not What I Ordered | |
| The importance of social media and access to others for chronic illness and for teens. | |
| The physical and social isolation of chronic illness | |
| The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue | |
| Loving What Is Byron Katie. My new favorite quote, "It’s not your job to like me it’s mine.” | |
| "You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. Til We Have Faces | |
| Chronic illness is transformative and not always in a bad way. | |
| Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>1:04:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5ab0522c352f53a1f3e6da89/1521602770112/1500w/multiple-sclerosis-chronic-illness-podcast-this-is-not-what-i-ordered-invisible-illness-podcast-invisible-not-broken-.jpg"/><itunes:title>Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<p>Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called <a target="_blank" href="https://laurenselfridge.com/listen">This Is Not What I Ordered.</a></p><p>To be VERY clear Lauren is on the calmer side of the spectrum of <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274">MS</a> that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered </p><p>Great tech explanation of <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274">MS</a></p><p>Some VERY good information about <a target="_blank" href="http://www.mayo.edu/research/centers-programs/center-multiple-sclerosis-cns-demyelinating-diseases/developing-new-symptomatic-therapies-ms">MS </a>diagnosis and tests</p><p>Stress is the doctors new go to instead of “hysteria”</p><p>Don’t be afraid to DEMAND a test that you know you need</p><p><a target="_blank" href="http://www.imdb.com/title/tt0088258/">Spinal Tap</a> is much more fun as a movie than as a medical test, click here to see what I mean. <a target="_blank" href="https://www.mayoclinic.org/tests-procedures/lumbar-puncture/about/pac-20394631">HERE</a></p><p>Sorry real life barking pug decided to be a “helper dog” and be a part of the interview</p><p>The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children</p><p>Call to Drs. for interviewees I would love to see the other side of sick world.</p><p>Yes, Monica is a complete <a target="_blank" href="http://www.neilgaiman.com/">Neil Gaiman.</a> There is no denying it. Someday <a target="_blank" href="http://www.bbc.co.uk/programmes/b006q2x0">Dr. Who </a>will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.</p><p>All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.</p><p>What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.</p><h3>Changing your views of what a successful fulfilling life to redefine not around what the body will do.</h3><p>Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!</p><p><strong>Some great career choices for the chronic spoonie</strong></p><p>Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.</p><p>Spoonie decisions for one’s work and social life, hint a bit like <a target="_blank" href="http://www.imdb.com/title/tt0084707/">Sophie's Choice</a></p><p>Chronic illness and the kick in the tail for life experiences</p><p>Public transportation and chronic illness Thank you Uber and Lyft</p><h2><a target="_blank" href="https://accessibility.uber.com/">Uber’s new medical service</a></h2><p><a target="_blank" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3933737/">Rodent infusions</a> let the Tom and Jerry jokes fly</p><p>The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious </p><p>Google Image search is not always your friend when you have a chronic illness</p><p>The calming effects of watching aquariums or paint on YouTube</p><p>What it is like to hope on horizons with a well-funded disorder</p><p>Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group <a target="_blank" href="https://www.facebook.com/thisisnotwhatiordered">This Is Not What I Ordered</a></p><p>The importance of social media and access to others for chronic illness and for teens.</p><p>The physical and social isolation of chronic illness </p><p>The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue</p><p><a target="_blank" href="https://www.amazon.com/Loving-What-Four-Questions-Change/dp/1400045371/ref=sr_1_1?ie=UTF8&qid=1521505678&sr=8-1&keywords=loving+what+is">Loving What Is</a> Byron Katie. My new favorite quote, <em>"It’s not your job to like me it’s mine.”</em></p><p>"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. <a target="_blank" href="https://www.amazon.com/Till-We-Have-Faces-Retold-ebook/dp/B01EFM8NMK/ref=sr_1_1?s=books&ie=UTF8&qid=1521505726&sr=1-1&keywords=til+we+have+faces+by+c.s.+lewis">Til We Have Faces </a></p><p>Chronic illness is transformative and not always in a bad way.</p><p>Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab05845352f53a1f3e7ff28/1521506633191/Remitting+MS+an+Interview+with+Lauren+Selfridge+from+This+Is+Not+What+I+Ordered+A+Chronic+Illness+Podcast.mp3" length="92021155" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5ab05845352f53a1f3e7ff28/1521506633191/Remitting+MS+an+Interview+with+Lauren+Selfridge+from+This+Is+Not+What+I+Ordered+A+Chronic+Illness+Podcast.mp3" length="92021155" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast</media:title></media:content></item><item><title>Burning Nights: CRPS and Double Amputations: Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 12 Mar 2018 13:08:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/2/15/crps-amputation-burning-nights-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a85be8cec212d3a593ecbd4</guid><description>Click to listen to Invisible Not Broken, a Chronic Illness Podcast, For | |
| This Weeks' Interview With Burning Nights Founder Victoria Discussing Her | |
| CRPS</description><content:encoded><![CDATA[<a href="https://www.burningnightscrps.org/" target="_blank"> | |
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| <p><strong>What is your disorder? </strong>*</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151">Complex Regional Pain Syndrome (CRPS)</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>24</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I was a trained Barrister (lawyer), I was lecturing in Law and became Head of Law at a college. I was happy, content with life, in love with a gorgeous Armed Forces man, just bought our 1st house and we were looking at planning a family</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>I would have continued my legal career as a Barrister in Family law</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>I am now confined to a wheelchair and am an above knee amputee due to the CRPS. I live in extreme burning and freezing excessive pain every day and suffer from wild temperature issues, swollen stumps as well as suffering from tremors and spasms on a daily basis. It’s so difficult and simple tasks such as getting dressed can take so long to do. I have to be careful what clothes I wear as they have to be light due to the hypersensitivity of both my remaining stumps. But I have the fantastic support of my husband. I also founded a charity - <a target="_blank" href="https://www.burningnightscrps.org/">Burning Nights CRPS Support</a> in the U.K. which I run along with 6 other volunteers.</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>Finding a cure for <a target="_blank" href="https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet">CRPS</a> to get rid of the stabbing, burning pain and other signs and symptoms. Also Better access to buildings, shops, bars etc for wheelchairs</p><p><strong>Do you have any life hacks?</strong> *</p><p>Using your iPhone to control the heating. Get a doorbell that comes through to your phone to tell the person where to leave the parcel or the doorbell that comes through to the iPhone and you press a button on your phone that opens the door. Learn to adapt clothes for your disability or use safety pins to help keep clothes stay shut! I’ve had to adapt clothes so they don’t get trapped in my wheelchair for example.</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get amazing support from my husband and sometimes from my family. I couldn’t do without my husband as he is my full-time carer</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>I was told that I couldn’t be in this much pain as I looked too well. I was also told that my condition couldn’t make me disabled as it was a psychiatric illness</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>It has been strained occasionally but he is always with me. It’s been tough but I love him.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>When I’m feeling low and depressed I don’t like telling my husband and Family because I feel I’m burdening them. I always try not to tell them how much pain I’m in. I always say I’m fine.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>Yes</p><p><strong>What is your best coping mechanism?</strong> *</p><p>Distraction techniques - definitely</p><p><strong>What are you the most fearful of and hopeful for in the future? </strong>*</p><p>I would like to hope that the condition would get either a specific medication or cure. However, I’m fearful that it won’t happen. I also hope that my condition does not worsen at any time in the future</p><p><strong>What is your favorite swear word?</strong></p><p>Shit</p><p><strong>Is there anything you want to make sure we talk about during the interview? </strong> </p><p>If we possible could we mention the U.K. charity that I founded - <a target="_blank" href="https://www.burningnightscrps.org/">Burning Nights CRPS Support </a>and the work we do including raising awareness of CRPS and supporting all those affected by the condition. I would also like to include our web address, mention we’re on social media and we have a U.K. helpline</p><p><strong>Any questions you think we should add to this list?</strong></p><p>Maybe ask how I got CRPS ie what caused it in the first place and when?</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>The hardest lesson is that you soon know and realize who your real friends are when you are diagnosed with a chronic illness especially one that is invisible</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p><a target="_blank" href="https://www.amazon.com/Unger-Professional-Nifty-Nabber-36/dp/B0000V0AGS/ref=sr_1_1?s=videogames&ie=UTF8&qid=1518714911&sr=8-1&keywords=stick+grabber">Grab stick to pick up </a>things from the floor</p><p><strong>What is the biggest lesson your illness has taught you?</strong></p><p>Live each day as if it was your last</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Interview With Burning Nights Founder and CRPS patient Victoria Abbott Fleming</itunes:subtitle><itunes:summary>Show Notes For Victoria Abbott Fleming who has CRPS and Founded Burning Nights | |
| Complex Regional pain syndrome USE to be RSD | |
| Bilateral Double amputee | |
| 24 from a barrister and teacher onto a new normal of hospitals and years of tests and issues that lead to double amputation and medically induced coma | |
| 39 doctors and 7 months to get an answer | |
| Some symptoms of CRPS to watch out for | |
| Yes, Monica is still angering to visit England. | |
| Socialized medicine, the NHS, and the difference with ACA | |
| What happens when you are in AGONY and everything seems basically fine and drs. keep saying it shouldn’t be hurting | |
| Monica is still annoyed her nuclear test did not line up with super powers giving spiders | |
| How does chronic illness affect work and your relationships when you don’t have a diagnosis but your pain hit 9 and 10 regularly | |
| Fate has a SICK sense of humor | |
| What it is like for EVERYTHING to change in one day, spoon respect. | |
| How does chronic pain change your life and those around you | |
| When medication removes having children from the future and the social system refuses to allow adoption to hand mothers. | |
| Handicap Mom tips from Monica and the upside of a wheelchair with toddlers | |
| The decision to amputate Phantom Limb Pain | |
| Uninvited Non Medical Maggots, yes, your next Punk Band Name | |
| Depression and chronic illness nope we are not always inspiring and we are TIRED of singing for our supper and our social lives. | |
| Some of the problems with Amputation and CRPS | |
| When the amount of health problems start looking like a Greek Tragedy this amazing person starts Burning Nights to educate other. | |
| Seriously she got Swine Flu and pneumonia and induced coma and then to CRPS onto the next leg, seeing the greek tragedy yet?</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a85be8cec212d3a593ecbd4/1521052641706/1500w/CRPS-Amputation-Chronic-illness-podcast-interview-invisible-not-broken.jpg"/><itunes:title>Complex Regional Pain Syndrome & Double Amputations </itunes:title><content:encoded><![CDATA[<p><strong>What is your disorder? </strong>*</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151">Complex Regional Pain Syndrome (CRPS)</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>24</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I was a trained Barrister (lawyer), I was lecturing in Law and became Head of Law at a college. I was happy, content with life, in love with a gorgeous Armed Forces man, just bought our 1st house and we were looking at planning a family</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>I would have continued my legal career as a Barrister in Family law</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>I am now confined to a wheelchair and am an above knee amputee due to the CRPS. I live in extreme burning and freezing excessive pain every day and suffer from wild temperature issues, swollen stumps as well as suffering from tremors and spasms on a daily basis. It’s so difficult and simple tasks such as getting dressed can take so long to do. I have to be careful what clothes I wear as they have to be light due to the hypersensitivity of both my remaining stumps. But I have the fantastic support of my husband. I also founded a charity - <a target="_blank" href="https://www.burningnightscrps.org/">Burning Nights CRPS Support</a> in the U.K. which I run along with 6 other volunteers.</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>Finding a cure for <a target="_blank" href="https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet">CRPS</a> to get rid of the stabbing, burning pain and other signs and symptoms. Also Better access to buildings, shops, bars etc for wheelchairs</p><p><strong>Do you have any life hacks?</strong> *</p><p>Using your iPhone to control the heating. Get a doorbell that comes through to your phone to tell the person where to leave the parcel or the doorbell that comes through to the iPhone and you press a button on your phone that opens the door. Learn to adapt clothes for your disability or use safety pins to help keep clothes stay shut! I’ve had to adapt clothes so they don’t get trapped in my wheelchair for example.</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>I get amazing support from my husband and sometimes from my family. I couldn’t do without my husband as he is my full-time carer</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>I was told that I couldn’t be in this much pain as I looked too well. I was also told that my condition couldn’t make me disabled as it was a psychiatric illness</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>It has been strained occasionally but he is always with me. It’s been tough but I love him.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>When I’m feeling low and depressed I don’t like telling my husband and Family because I feel I’m burdening them. I always try not to tell them how much pain I’m in. I always say I’m fine.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>Yes</p><p><strong>What is your best coping mechanism?</strong> *</p><p>Distraction techniques - definitely</p><p><strong>What are you the most fearful of and hopeful for in the future? </strong>*</p><p>I would like to hope that the condition would get either a specific medication or cure. However, I’m fearful that it won’t happen. I also hope that my condition does not worsen at any time in the future</p><p><strong>What is your favorite swear word?</strong></p><p>Shit</p><p><strong>Is there anything you want to make sure we talk about during the interview? </strong> </p><p>If we possible could we mention the U.K. charity that I founded - <a target="_blank" href="https://www.burningnightscrps.org/">Burning Nights CRPS Support </a>and the work we do including raising awareness of CRPS and supporting all those affected by the condition. I would also like to include our web address, mention we’re on social media and we have a U.K. helpline</p><p><strong>Any questions you think we should add to this list?</strong></p><p>Maybe ask how I got CRPS ie what caused it in the first place and when?</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>The hardest lesson is that you soon know and realize who your real friends are when you are diagnosed with a chronic illness especially one that is invisible</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p><a target="_blank" href="https://www.amazon.com/Unger-Professional-Nifty-Nabber-36/dp/B0000V0AGS/ref=sr_1_1?s=videogames&ie=UTF8&qid=1518714911&sr=8-1&keywords=stick+grabber">Grab stick to pick up </a>things from the floor</p><p><strong>What is the biggest lesson your illness has taught you?</strong></p><p>Live each day as if it was your last</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aa5b5c353450a415649d621/1520809649917/CRPS-Burning-Nights-Invisible-Illness-Podcast+-+3%3A11%3A18%2C+3.59+PM.mp3" length="85565567" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5aa5b5c353450a415649d621/1520809649917/CRPS-Burning-Nights-Invisible-Illness-Podcast+-+3%3A11%3A18%2C+3.59+PM.mp3" length="85565567" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Complex Regional Pain Syndrome & Double Amputations </media:title></media:content></item><item><title>Bed Rest and Chronic Illness A Panel: Lupus, Fibromyalgia, and EDS How To Live A Meaningful Life From Bed Rest {A Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 05 Mar 2018 14:11:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/3/5/lupus-fibromyalgia-eds-and-a-car-accident-karma-needs</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a9c7d15085229f6ca2f2535</guid><description>Click Title To Listen To How To Have A Meaningful Horizontal Life On Bed | |
| Rest: Panel With Elizabeth Clamon (Naruropath Lupus, Car Accident, | |
| Fibromyalgia, and Car Accident) and Monica Michelle (Podcast Host, writer, | |
| and illustrator with Ehlers Danlos, Fibromyalgia, and POTS).</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c83298165f558746c7d4f/1520211331253/BEDREST-LUPUS-FIBROMYALGIA-EHLERSDANLOS-CHRONIC-ILLNESS-PODCAST.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Karma Can Chill: Best Rest and Staying San3 A Spoonie Panel" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c83298165f558746c7d4f/1520211331253/BEDREST-LUPUS-FIBROMYALGIA-EHLERSDANLOS-CHRONIC-ILLNESS-PODCAST.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c8324085229f6ca309ad9/1520211349975/IMG_6092.JPG" data-image-dimensions="512x512" data-image-focal-point="0.5,0.5" alt="Clamon Natural Health Talking To Invisible Not Broken A Chronic Illness Podcast About Bed Rest" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c8324085229f6ca309ad9/1520211349975/IMG_6092.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c83269140b7602db3bfe6/1520211362107/63922C07-4582-40F3-A4D5-880A4E5CD7BD.jpeg" data-image-dimensions="393x393" data-image-focal-point="0.5,0.5" alt="Elizabeth Clammon On Invisible Not Broken Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c83269140b7602db3bfe6/1520211362107/63922C07-4582-40F3-A4D5-880A4E5CD7BD.jpeg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c8343ec212db87d5c1bfe/1520211386855/Monica-Michelle-Headshot.JPG" data-image-dimensions="650x650" data-image-focal-point="0.5,0.5" alt="Monica Michelle Invisible Not Broken Chronic Illness Podcast Host" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c8343ec212db87d5c1bfe/1520211386855/Monica-Michelle-Headshot.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868371c10b1a7d5b3534/1520211408863/emotional-support-pug.jpg" data-image-dimensions="487x650" data-image-focal-point="0.5,0.5" alt="Glynda The Good Pug Monica Michelle's Support Pug" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868371c10b1a7d5b3534/1520211408863/emotional-support-pug.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868524a69491fee905c9/1520211432668/emotional-support-wolf.jpg" data-image-dimensions="487x650" data-image-focal-point="0.5,0.5" alt="Captain Kirk Monica Michelle's Well Meaning Support Wolf" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868524a69491fee905c9/1520211432668/emotional-support-wolf.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868e0d9297b1258966a3/1520211281504/IMG_0143.jpg" data-image-dimensions="2048x2048" data-image-focal-point="0.5,0.5" alt="Be Kind" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a9c832441920278298548e8/5a9c868e0d9297b1258966a3/1520211281504/IMG_0143.jpg?format=1000w" /><br> | |
| <h1 class="text-align-center"><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789">Lupus</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">Fibromyalgia</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">EDS</a>, and a Car Accident: Karma needs to chill.</h1><h1>A discussion with naturopath Elizabeth Clamon from <a target="_blank" href="https://clamonnaturalhealth.com/">Clamon Natural Health</a>, and <a href="http://invisiblenotbroken.com/home?tag=Ehlers%20Danlos">Monica Michelle</a> who between the two of them are dealing with <a href="https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490">Chronic Fatigue</a>, Lupus, Ehlers Danlos, Chronic Pain, Car Accident, and Fibromyalgia. This is a panel talk all about LIVING with a horizontal life or how to live when bedbound with chronic illness.</h1> | |
| <p> </p><p>When Monica Michelle became sick and spending far too much time in bed she started a list of what would still be possible in her life when so much of it took place in bed. Elizabeth Clamon discusses her life after a car accident and chronic illness pushed her into bed right after she got her degree, Elizabeth began and runs a business, <a target="_blank" href="https://clamonnaturalhealth.com/">Clamon Natural Health</a>, while homeschooling her children.</p><p>During this panel</p><ul><li>Parenting from bed: homeschool, delegation, chores, and listen for Darling Slug Days (Monica's favorite tip for spoonie parents with young children)</li><li>Great things to have on bed rest: dumbells,<a target="_blank" href="https://www.apple.com/apple-watch-series-3/?afid=p238%7Cs2QbmM6cp-dc_mtid_1870765e38482_pcrid_224100368864_&cid=aos-us-kwgo-watch--slid--product-"> apple watch</a>, <a target="_blank" href="https://www.apple.com/ipad/">iPad</a>, <a target="_blank" href="https://www.apple.com/shop/product/MK0C2/apple-pencil-for-ipad-pro?fnode=37">apple pencil</a>, yoga ball, bands, <a target="_blank" href="https://www.amazon.com/Mueller-Program-Pressure-Tempered-Sterilizer/dp/B01KSKKHRW/ref=sr_1_1_sspa?s=kitchen&ie=UTF8&qid=1520208487&sr=1-1-spons&keywords=slow+cooker&psc=1">slow cooker</a>, <a target="_blank" href="https://www.amazon.com/Mind-Reader-Mobile-Heavy-Silver/dp/B075NTS1DL/ref=sr_1_5?s=home-garden&ie=UTF8&qid=1520208537&sr=1-5&keywords=rolling+file+cabinet">rolling file cabinet</a>, and <a target="_blank" href="https://www.amazon.com/dp/B077SQ285M/ref=sspa_dk_detail_2?psc=1&pd_rd_i=B077SQ285M&pd_rd_wg=4j6AD&pd_rd_r=4VNCGY2HFNW8DGWE24R5&pd_rd_w=N3SsH">pedals</a></li><li>For work delegation and clear goals. Try <a target="_blank" href="https://www.fiverr.com/">Fiverr</a> or <a target="_blank" href="https://www.taskrabbit.com/?utm_source=pd_search&utm_medium=ggl&utm_campaign=Google_Search_SF_Legacy_Brand&utm_content=50787968829&utm_term=task%20rabbit&gclid=CjwKCAiAz-7UBRBAEiwAVrz-9dKhsvB9o44M0hJBoXNbnNyri9-omBKEbwxFjpbHTSLit69SfRuB-hoCshwQAvD_BwE">TaskRabbit</a></li><li>How to stay physically active from a bed. We are NOT doctors. We don't even play one on the podcast or TV so ask someone with a coat and a degree before using. </li><li>For us the IMPORTANCE of pets. Monica has fun with direwolf while having a POTS attack</li><li>We talk about work and education that can be done from bed or recliner.</li><li>A real talk about the NEW NORMAL, thank you, Dame Oprah.</li><li><a href="https://www.pinterest.com/monicamichelle/">Pinterest</a>, yes, Pinterest, the ultimate rabbit hole. Also some advice on how to use Pinterest to make your life So much easier</li><li><a target="_blank" href="https://keep.google.com">Google Keep</a> the BEST list-making app for the forgetful spoonie</li><li>Some Books To Read to adjust to a new life of chronic illness</li></ul><ol><li><a target="_blank" href="https://www.amazon.com/Raging-Sloth-Upside-Down-Blueprint-Purpose/dp/1943526354/ref=sr_1_1?ie=UTF8&qid=1520208024&sr=8-1&keywords=the+raging+sloth">The Raging Sloth Eric Eden</a></li><li><a target="_blank" href="https://www.amazon.com/There-Nothing-Wrong-You-Self-Hate/dp/0971030901">There's Nothing Wrong With You Cheri Huber</a></li><li><a target="_blank" href="https://www.amazon.com/Siddhartha-Hermann-Hesse/dp/8129102048/ref=sr_1_1?s=books&ie=UTF8&qid=1520208099&sr=1-1&keywords=sidartha+by+herman+hesse">Siddartha Hermann Hesse</a></li></ol><iframe scrolling="no" data-image-dimensions="640x360" allowfullscreen="" src="//cdn.embedly.com/widgets/media.html?src=https%3A%2F%2Fs3.amazonaws.com%2Fembed.animoto.com%2Fplay.html%3Fw%3Dswf%2Fproduction%2Fvp1%26e%3D1520453711%26f%3DvRZooTbOH72d6ffpZC3c6A%26d%3D0%26m%3Dp%26r%3D360p%2B720p%26i%3Dm%26ct%3Dclick%2520to%2520listen%2520to%2520the%2520entire%2520episode%26cu%3Dhttp%3A%2F%2Finvisiblenotbroken.com%2Fhome%2F2018%2F3%2F5%2Flupus-fibromyalgia-eds-and-a-car-accident-karma-needs%26asset_domain%3Ds3-p.animoto.com%26animoto_domain%3Danimoto.com%26options%3Dstart_hq&url=https%3A%2F%2Fvideo214.com%2Fplay%2FvRZooTbOH72d6ffpZC3c6A%2Fs%2Fdark&image=https%3A%2F%2Fd2m23yiuv18ohn.cloudfront.net%2FVideo%2FvRZooTbOH72d6ffpZC3c6A%2Fcover_640x360.jpg&key=61d05c9d54e8455ea7a9677c366be814&type=text%2Fhtml&schema=video214&wmode=opaque" width="640" data-embed="true" frameborder="0" class="embedly-embed" height="360"></iframe> | |
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| </form>]]></content:encoded><itunes:author>Monica Michelle</itunes:author><itunes:subtitle>Karma Needs To Chill A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Lupus, Fibromyalgia, EDS, and a Car Accident: Karma needs to chill. | |
| A discussion with naturopath Elizabeth Clamon from Clamon Natural Health, and Monica Michelle who between the two of them are dealing with Chronic Fatigue, Lupus, Ehlers Danlos, Chronic Pain, Car Accident, and Fibromyalgia. This is a panel talk all about LIVING with a horizontal life or how to live when bedbound with chronic illness.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a9c7d15085229f6ca2f2535/1520453717153/1500w/BEDREST-LUPUS-FIBROMYALGIA-EHLERSDANLOS-CHRONIC-ILLNESS-PODCAST.jpg"/><itunes:title>Surviving Bed Rest With Lupus, Chronic Fatigue, Fibromyalgia, Ehlers Danlos, and POTS</itunes:title><content:encoded><![CDATA[<p>When Monica Michelle became sick and spending far too much time in bed she started a list of what would still be possible in her life when so much of it took place in bed. Elizabeth Clamon discusses her life after a car accident and chronic illness pushed her into bed right after she got her degree, Elizabeth began and runs a business, <a target="_blank" href="https://clamonnaturalhealth.com/">Clamon Natural Health</a>, while homeschooling her children.</p><p>During this panel</p><p>Parenting from bed: homeschool, delegation, chores, and listen for Darling Slug Days (Monica's favorite tip for spoonie parents with young children)</p><p>Great things to have on bed rest: dumbells,<a target="_blank" href="https://www.apple.com/apple-watch-series-3/?afid=p238%7Cs2QbmM6cp-dc_mtid_1870765e38482_pcrid_224100368864_&cid=aos-us-kwgo-watch--slid--product-"> apple watch</a>, <a target="_blank" href="https://www.apple.com/ipad/">iPad</a>, <a target="_blank" href="https://www.apple.com/shop/product/MK0C2/apple-pencil-for-ipad-pro?fnode=37">apple pencil</a>, yoga ball, bands, <a target="_blank" href="https://www.amazon.com/Mueller-Program-Pressure-Tempered-Sterilizer/dp/B01KSKKHRW/ref=sr_1_1_sspa?s=kitchen&ie=UTF8&qid=1520208487&sr=1-1-spons&keywords=slow+cooker&psc=1">slow cooker</a>, <a target="_blank" href="https://www.amazon.com/Mind-Reader-Mobile-Heavy-Silver/dp/B075NTS1DL/ref=sr_1_5?s=home-garden&ie=UTF8&qid=1520208537&sr=1-5&keywords=rolling+file+cabinet">rolling file cabinet</a>, and <a target="_blank" href="https://www.amazon.com/dp/B077SQ285M/ref=sspa_dk_detail_2?psc=1&pd_rd_i=B077SQ285M&pd_rd_wg=4j6AD&pd_rd_r=4VNCGY2HFNW8DGWE24R5&pd_rd_w=N3SsH">pedals</a></p><p>For work delegation and clear goals. Try <a target="_blank" href="https://www.fiverr.com/">Fiverr</a> or <a target="_blank" href="https://www.taskrabbit.com/?utm_source=pd_search&utm_medium=ggl&utm_campaign=Google_Search_SF_Legacy_Brand&utm_content=50787968829&utm_term=task%20rabbit&gclid=CjwKCAiAz-7UBRBAEiwAVrz-9dKhsvB9o44M0hJBoXNbnNyri9-omBKEbwxFjpbHTSLit69SfRuB-hoCshwQAvD_BwE">TaskRabbit</a></p><p>How to stay physically active from a bed. We are NOT doctors. We don't even play one on the podcast or TV so ask someone with a coat and a degree before using. </p><p>For us the IMPORTANCE of pets. Monica has fun with direwolf while having a POTS attack</p><p>We talk about work and education that can be done from bed or recliner.</p><p>A real talk about the NEW NORMAL, thank you, Dame Oprah.</p><p><a href="https://www.pinterest.com/monicamichelle/">Pinterest</a>, yes, Pinterest, the ultimate rabbit hole. Also some advice on how to use Pinterest to make your life So much easier</p><p><a target="_blank" href="https://keep.google.com">Google Keep</a> the BEST list-making app for the forgetful spoonie</p><p>Some Books To Read to adjust to a new life of chronic illness</p><p><a target="_blank" href="https://www.amazon.com/Raging-Sloth-Upside-Down-Blueprint-Purpose/dp/1943526354/ref=sr_1_1?ie=UTF8&qid=1520208024&sr=8-1&keywords=the+raging+sloth">The Raging Sloth Eric Eden</a></p><p><a target="_blank" href="https://www.amazon.com/There-Nothing-Wrong-You-Self-Hate/dp/0971030901">There's Nothing Wrong With You Cheri Huber</a></p><p><a target="_blank" href="https://www.amazon.com/Siddhartha-Hermann-Hesse/dp/8129102048/ref=sr_1_1?s=books&ie=UTF8&qid=1520208099&sr=1-1&keywords=sidartha+by+herman+hesse">Siddartha Hermann Hesse</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9c8cc1ec212db87d5e4252/1520209528297/Bed+Rest-+A+Meaningful+Life+From+Bed+With+Lupus%2C+Chronic+Fatigue%2C+Ehlers+Danlos%2C+and+Fibromyalgia.mp3" length="85030161" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9c8cc1ec212db87d5e4252/1520209528297/Bed+Rest-+A+Meaningful+Life+From+Bed+With+Lupus%2C+Chronic+Fatigue%2C+Ehlers+Danlos%2C+and+Fibromyalgia.mp3" length="85030161" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Surviving Bed Rest With Lupus, Chronic Fatigue, Fibromyalgia, Ehlers Danlos, and POTS</media:title></media:content></item><item><title>Everything you wanted to know about Medical Marijuana : Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 26 Feb 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/2/23/everything-you-wanted-to-know-about-medical-marijuana-laws-health-and-the-other-side-of-legality-its-not-easy-being-green</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a90cca9652dea92f985834a</guid><description>Click Title To Listen To The Podcast Panel on Everything You Want To Know | |
| About Medical Marijuana</description><content:encoded><![CDATA[<h1 class="text-align-center">Links & Show Notes For Medical Marijuana and Chronic Pain Panel Discussion</h1><ol><li><a target="_blank" href="https://www.cnn.com/2012/12/10/health/medical-marijuana-child/index.html">Jason David</a> and child seizures medical marijuana</li><li><a href="https://www.epilepsycolorado.org/news-research/medical-marijuana/efco-report-to-the-community/">Charlottes Web CBD</a> treatment for<a target="_blank" href="https://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/evaluating-and-managing-patients-with-pediatric-epilepsy"> pediatric seizures</a></li><li><a target="_blank" href="https://www.cnn.com/2013/08/08/health/gupta-changed-mind-marijuana/index.html">Sanjay Gupta</a></li><li><a target="_blank" href="http://www.oprah.com/health_wellness/alternative-treatments-for-chronic-pain?FB=fb_omag_pain_relief_without_pills">Oprah</a> and Medical Marijuana</li><li><a href="https://www.sunset.com/garden/landscaping-design/marijuana-plants">Sunset Magazine</a> and Medical Marijuana in landscaping</li><li><a target="_blank" href="https://www.nationalgeographic.com/magazine/2015/06/marijuana-science-drug-research-legality/">National Geographic and Medical Marijuana</a></li><li><a target="_blank" href="https://www.cnn.com/2014/03/10/health/medical-marijuana-refugees/index.html">Medical Marijuana Refugees</a></li><li><a href="https://www.npr.org/sections/health-shots/2018/01/21/578986845/cancer-patients-get-little-guidance-from-doctors-on-using-medical-marijuana">Medical Marijuana and Cancer</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+and+ptsd&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwjo_4S1w73ZAhUHKKwKHbVmDOMQgQMIJzAA">Medical Marijuana and PTSD</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+and+chronic+pain&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwig0pC_w73ZAhVBaq0KHUzMAgAQgQMIJzAA">Medical Marijuana and Chronic Pain</a>, <a target="_blank" href="https://www.sciencedaily.com/releases/2014/06/140602150914.htm">Medical Marijuana and Autoimmune Disorders</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+depression+medical+journal&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwi-lN36w73ZAhUHeawKHasLDK8QgQMIJzAA">Medical Marijuana and Depression,</a></li><li>What does <a target="_blank" href="https://www.merriam-webster.com/dictionary/peer%20review">Peer Reviewed</a> mean?</li><li><a target="_blank" href="http://www.cdtfa.ca.gov/industry/cannabis.htm">California Medical Marijuana Tax Code</a></li><li><a target="_blank" href="https://www.cdph.ca.gov/Programs/CHSI/Pages/Medial-Marijuana-Identification-Card.aspx">Department of Health Medical Marijuana</a></li><li><a target="_blank" href="https://www.youtube.com/watch?v=CJlqsdezhhk">The Sinister Reason Weed is Illegal </a>A fun way to find out about the VERY racially motivated reason of why marijuana became illegal.</li><li><a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-is-cbg-cannabinoid">CBG</a> <a target="_blank" href="https://www.projectcbd.org/about/what-cbd">CBD</a> <a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-is-tetrahydrocannabinol">THC </a></li></ol><hr /><h1 class="text-align-center">Medical Marijuana Panel Show Notes</h1><hr /><h3 class="text-align-center">Everything you wanted to know about Medical Marijuana: Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green</h3> | |
| <img class="thumb-image" alt="download.png" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9213c5652dea92f9b957a7/1519522767718/download.png" data-image-dimensions="1500x283" data-image-focal-point="1.0,0.5" data-load="false" data-image-id="5a9213c5652dea92f9b957a7" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9213c5652dea92f9b957a7/1519522767718/download.png?format=1000w" /> | |
| <p>Emily Joyce<a target="_blank" href="http://www.cwanalytical.com/"> CW Analytical Laboratories </a>VP business development </p> | |
| <img class="thumb-image" alt="medical-marijuana-.png" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9214089140b7427f16943c/1519522828340/medical-marijuana-.png" data-image-dimensions="600x170" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a9214089140b7427f16943c" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a9214089140b7427f16943c/1519522828340/medical-marijuana-.png?format=1000w" /> | |
| <p><a target="_blank" href="http://moxiemeds.com/about/">Jessica Peters Moxi</a></p><p> </p> | |
| <img class="thumb-image" alt="invisible-not-broken-invisible-illness-podcast-websize.jpg" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a92142bc830257a3456fcf9/1519522864642/invisible-not-broken-invisible-illness-podcast-websize.jpg" data-image-dimensions="1400x1400" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a92142bc830257a3456fcf9" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a92142bc830257a3456fcf9/1519522864642/invisible-not-broken-invisible-illness-podcast-websize.jpg?format=1000w" /> | |
| <p>Monica Michelle Podcaster, Children's Book Writer and Illustrator, and EDS, POTS, MCA, Fibromyalgia, and chronic pain patient and medical marijuana user.</p><p> </p><p> </p><p> </p><hr /><iframe scrolling="no" allowfullscreen="" src="//www.youtube.com/embed/XHEs-L3oB_8?wmode=opaque&enablejsapi=1" width="854" frameborder="0" height="480"> | |
| </iframe><p> </p><p>What does a lab do for medical marijuana?</p><p>Jessica Peters of <a target="_blank" href="http://moxiemeds.com/about/">Moxi CBD </a>rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her <a target="_blank" href="https://www.endocenter.org/?gclid=CjwKCAiAt8TUBRAKEiwAOI9pAGc1zZgKzmPEhu9I7yY8vctUu7hthyytiabjmLYVHX_AFIeRfQhFaxoCdtgQAvD_BwE">endometriosis</a> becoming non-symptomatic after her use of marijuana</p><p>Jessica has worked at<a target="_blank" href="https://www.shopharborside.com/"> Harborside Medical</a></p><p>If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense</p><p>Taxation and not having the ability to use insurance means at least for <a href="http://invisiblenotbroken.com/blog?tag=Medical%20Marijuana">Monica Michelle</a> not being able to afford medication when taxes are more than the product</p><p>Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them. </p><p><a target="_blank" href="http://www.cdss.ca.gov/Reporting/Report-Abuse/Child-Protective-Services">CPS</a> issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find.</p><p>A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death.</p><p>Unravel the medical mystery of THC CBD and the rest of the alphabet soup</p><p>You thought THC was just for fun….hang on and have a listen</p><p>So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits).</p><p>What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time.</p><p>Who benefits when people can grow their own medicine? Any guesses?</p><p>Why are Pharmaceutical companies investing research into medical marijuana?</p><p>What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance.</p><p>What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change</p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Everything you wanted to know about Medical Marijuana : Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green</itunes:subtitle><itunes:summary>What we Covered In Less Than An Hour! | |
| What does a lab do for medical marijuana? | |
| Jessica Peters of Moxi CBD rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her endometriosis becoming non-symptomatic after her use of marijuana | |
| Jessica has worked at Harborside Medical | |
| If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense | |
| Taxation and not having the ability to use insurance means at least for Monica Michelle not being able to afford medication when taxes are more than the product | |
| Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them. | |
| CPS issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find. | |
| A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death. | |
| Unravel the medical mystery of THC CBD and the rest of the alphabet soup | |
| You thought THC was just for fun….hang on and have a listen | |
| So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits). | |
| What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time. | |
| Who benefits when people can grow their own medicine? Any guesses? | |
| Why are Pharmaceutical companies investing research into medical marijuana? | |
| What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance. | |
| What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>59:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a90cca9652dea92f985834a/1519853998592/1500w/medical-marijuana-chronic-illness-podcast.jpg"/><itunes:title>Medical Marijuana & Chronic Illness</itunes:title><content:encoded><![CDATA[<h1>Links & Show Notes For Medical Marijuana and Chronic Pain Panel Discussion</h1><p><a target="_blank" href="https://www.cnn.com/2012/12/10/health/medical-marijuana-child/index.html">Jason David</a> and child seizures medical marijuana</p><p><a href="https://www.epilepsycolorado.org/news-research/medical-marijuana/efco-report-to-the-community/">Charlottes Web CBD</a> treatment for<a target="_blank" href="https://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/evaluating-and-managing-patients-with-pediatric-epilepsy"> pediatric seizures</a></p><p><a target="_blank" href="https://www.cnn.com/2013/08/08/health/gupta-changed-mind-marijuana/index.html">Sanjay Gupta</a></p><p><a target="_blank" href="http://www.oprah.com/health_wellness/alternative-treatments-for-chronic-pain?FB=fb_omag_pain_relief_without_pills">Oprah</a> and Medical Marijuana</p><p><a href="https://www.sunset.com/garden/landscaping-design/marijuana-plants">Sunset Magazine</a> and Medical Marijuana in landscaping</p><p><a target="_blank" href="https://www.nationalgeographic.com/magazine/2015/06/marijuana-science-drug-research-legality/">National Geographic and Medical Marijuana</a></p><p><a target="_blank" href="https://www.cnn.com/2014/03/10/health/medical-marijuana-refugees/index.html">Medical Marijuana Refugees</a></p><p><a href="https://www.npr.org/sections/health-shots/2018/01/21/578986845/cancer-patients-get-little-guidance-from-doctors-on-using-medical-marijuana">Medical Marijuana and Cancer</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+and+ptsd&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwjo_4S1w73ZAhUHKKwKHbVmDOMQgQMIJzAA">Medical Marijuana and PTSD</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+and+chronic+pain&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwig0pC_w73ZAhVBaq0KHUzMAgAQgQMIJzAA">Medical Marijuana and Chronic Pain</a>, <a target="_blank" href="https://www.sciencedaily.com/releases/2014/06/140602150914.htm">Medical Marijuana and Autoimmune Disorders</a>, <a target="_blank" href="https://scholar.google.com/scholar?q=medical+marijuana+depression+medical+journal&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwi-lN36w73ZAhUHeawKHasLDK8QgQMIJzAA">Medical Marijuana and Depression,</a></p><p>What does <a target="_blank" href="https://www.merriam-webster.com/dictionary/peer%20review">Peer Reviewed</a> mean?</p><p><a target="_blank" href="http://www.cdtfa.ca.gov/industry/cannabis.htm">California Medical Marijuana Tax Code</a></p><p><a target="_blank" href="https://www.cdph.ca.gov/Programs/CHSI/Pages/Medial-Marijuana-Identification-Card.aspx">Department of Health Medical Marijuana</a></p><p><a target="_blank" href="https://www.youtube.com/watch?v=CJlqsdezhhk">The Sinister Reason Weed is Illegal </a>A fun way to find out about the VERY racially motivated reason of why marijuana became illegal.</p><p><a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-is-cbg-cannabinoid">CBG</a> <a target="_blank" href="https://www.projectcbd.org/about/what-cbd">CBD</a> <a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-is-tetrahydrocannabinol">THC</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a921b7c0d9297895c70058a/1519524921461/Medical-Marijuana-Panel-Chronic-Pain.mp3" length="84495382" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a921b7c0d9297895c70058a/1519524921461/Medical-Marijuana-Panel-Chronic-Pain.mp3" length="84495382" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Medical Marijuana & Chronic Illness</media:title></media:content></item><item><title>Chronic Fatigue PCOS A Real Life What Would Happen If Your Life Changed Completely In One Day {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 19 Feb 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/2/15/chronic-fatigue-pcos-a-real-life-what-would-happen-if-your-life-changed-completely-in-one-day-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a85c1cc652dea4d51029726</guid><description>Click Title To Listen To This Week's Chronic Illness Podcast About Chronic | |
| Fatigue or CFS or ME | |
| Listen this week to Invisible Not Broken Interview Spoonie Blogger Frances | |
| (Fancy Like That We talk about her Chronic Fatigue Syndrome (now called CFS | |
| or ME) and how your entire life and goals can change on a Monday. Give a | |
| listen to find out how to make and keep a life even when on bedrest.</description><content:encoded><![CDATA[<a class="image-slide-anchor content-fill" | |
| > | |
| <img class="thumb-image" alt="CFS and PCOS This Week on Invisible Not Broken A Chronic Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a8a21ca652deaeaabf82074/5a8a21ca0d9297112d0e46ab/1519002965716/chronic-fatigue-CFS-ME-Chronic-Illness-Podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a8a21ca0d9297112d0e46ab" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a8a21ca652deaeaabf82074/5a8a21ca0d9297112d0e46ab/1519002965716/chronic-fatigue-CFS-ME-Chronic-Illness-Podcast.jpg?format=1000w" /><br> | |
| </a> | |
| <a class="image-slide-anchor content-fill" | |
| > | |
| <img class="thumb-image" alt="Chronic Fatigue This Week On Invisible Not Broken A Chronic Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a8a21ca652deaeaabf82074/5a8a21cd0d9297112d0e47b2/1519003163432/chronic-fatigue-CFS-ME-Chronic-Illness-.jpg" data-image-dimensions="1365x2048" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a8a21cd0d9297112d0e47b2" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a8a21ca652deaeaabf82074/5a8a21cd0d9297112d0e47b2/1519003163432/chronic-fatigue-CFS-ME-Chronic-Illness-.jpg?format=1000w" /><br> | |
| </a> | |
| <a href="https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html" target="_blank"> | |
| <img class="thumb-image" alt=" Click to See Francis' Blog " data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a85c546c83025673f1f9f51/1518716256786/header+2.jpg" data-image-dimensions="1581x348" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a85c546c83025673f1f9f51" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a85c546c83025673f1f9f51/1518716256786/header+2.jpg?format=1000w" /> | |
| </a> | |
| <p>Click to See Francis' Blog</p> | |
| <hr /><h1 class="text-align-center">Questions</h1><hr /><p><strong>What is your disorder? </strong>*</p><p><a target="_blank" href="https://www.cdc.gov/me-cfs/index.html">CFS</a> (and<a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439"> PCOS</a>) Please read Frances' blog post about CFS at her blog <a href="https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html">Fancy Like That</a> and follow all of her social media I spent close to stalker-like hours on her Pinterest page.</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>24</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I was a quote-unquote 'normal' twenty-something with a lot of plans</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would probably be working hard on my career and I would spend most of my spare time painting and be decorating our new house (instead of directing my partner to do it from the sofa...)</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Although it may seem like fun and games to be permanently having a sick day, it gets boring fast... especially when you don't always even have the brain capacity to do things like binge-watch great TV shows and read books that have been on your to-read pile forever. I'm currently working on a programme with my CFS clinic to raise my energy levels and while that is working it also means I have to take 15-minute breaks every half hour, no matter what, and I think that can be difficult for people to understand too.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>More energy! Ha. But seriously... since diving (slash being dunked) into the world of invisible illnesses I think the biggest thing that would make a difference for me is just more understanding - by doctors and the general public - of invisible illnesses and of how to talk to the people dealing with them.</p><p><strong>Do you have any life hacks? *</strong></p><p>Join a Facebook group! I wasn't sold on going to the support group my doctor found because of the travel and general energy usage it would involve, but I've felt a lot less alone since finding so many places online where I can talk to other people who have the same issues as me and actually understand what I mean when I say I'm having a bad day etc. I'm also really into bullet journaling at the moment - it's a great creative outlet for me (although it doesn't have to be decorative to work!) and I find it so helpful to have everything laid out in ways that make sense to me.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I'm incredibly lucky to have a bunch of amazingly supporting friends and family and my boyfriend, who I live with. The best kind of support is when people say that they've read up on your illness or ask questions that show they're really trying to understand. Having said that, I also really value the friends I have who don't bring it up at all unless I do - sometimes you need to be taken out of the chronic illness bubble and gossip about so-and-so's latest Instagram post or whatever and forget about everything for a while.</p><p>Have you ever had someone not believe you have an invisible illness because of your appearance? *</p><p>Not yet... and touch wood never. I've had people say to me that I look 'better' or 'well', but in context, they generally mean in comparison to when they last saw me (usually this only happens when I bother to put makeup on and/or do something with my hair other than my now-signature pineapple bun)</p><p><strong>Has this been a positive or negative experience? *</strong></p><p>It doesn't make me feel great, but I know that they mean well - I just need to work out a way to tell them that I'd rather not hear it without being rude!</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I've definitely had to change the way that I think about certain relationships. I'm usually someone who takes on the 'Organiser' role in friendship groups, and I've had to tell myself to step back from that because I know that logistics and things are going to drain my energy. And in my relationship with my boyfriend, I have to work hard not to feel like we've gone from equal partners to carer and patient sometimes, especially on my worse days when he not only has to go to work while I stay home, but also comes home and does all of the cooking and cleaning, plus looks after all of our pets. And when he goes away - on holiday with his friends, or for work - if it's for more than a couple of days I have to have my parents come to stay with me or go to them because it's too much to try and keep myself and the house going on my own for too long. I think for me the key is talking about that kind of stuff with the people involved and reminding myself constantly that they're doing it because they love me and not because they think I'm incapable. With my boyfriend, we've recently started having set-aside 'date nights' in the week, which is something I always thought was a bit cheesy before, but now it's good for us as a time to really spend time as a couple.</p><p><strong>Is there anything you are afraid to tell even the people closest to you? *</strong></p><p>Sometimes I'll try to hide how bad I'm feeling - emotionally and/or physically - but I'm trying to avoid doing that... it always comes out anyway, and it's not good for me to bottle things up!</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes and no. I'm in a weird place where <a target="_blank" href="https://www.cdc.gov/me-cfs/index.html">CFS/ME</a> is sort of 'in vogue' at the moment - there have been a few features about it on the news and radio recently in the UK, so my doctors are keen for me to understand that they understand. However, I do find it difficult sometimes to go to appointments alone, especially when my brain fog is particularly active, and I've had difficulty in the pat conveying that to doctors.</p><p><strong>What is your best coping mechanism? *</strong></p><p>Humour, usually of the gallows variety, and listening to podcasts - usually about true crime.</p><p><strong>What are you the most fearful of and hopeful for in the future? *</strong></p><p>I'm hopeful that I'll find a way to manage my symptoms and that I can turn this whole period of my life into something positive and productive. I'm fearful of having a relapse into worse symptoms, and of my loved ones getting bored of my limitations.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck (ideally followed by 'you', 'it', or 'off')</p><p><strong>Is there anything you want to make sure we talk about during the interview? </strong>Like an organization you want to promote or something specific that you deal with.</p><p>I'd love you to push my <a target="_blank" href="https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html">blog</a> if possible!! I'm planning a series of CFS-related posts alongside my usual blather</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>It's made me very aware of my privileges when it comes to healthcare and having a support network, and spending so much time stuck in my own head has also made me get to know myself a lot better, too!</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My <a target="_blank" href="http://www.netflix.com">Netflix</a> subscription, a decent firm pillow, and bed socks</p><hr /><h2 class="text-align-center">A List Of Our Favorite Shows To Stream</h2><hr /><ul dir="ltr"><li><a target="_blank" href="http://www.cwtv.com/shows/crazy-ex-girlfriend/">Crazy Ex-Girlfriend</a></li><li><a target="_blank" href="https://www.britbox.com/us/show/Escape_to_the_Country_15521?gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeXRNhZZiDfIx7qNmI7ZQy70c7_A1g0q9-Ts6SqpO8l3IzDmPzkDD0IaAq_uEALw_wcB">Escape To The Country</a></li><li><a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a></li><li><a href="http://www.bbc.co.uk/programmes/b00gbbl0">Lark Rise To Candleford</a></li><li><a target="_blank" href="http://www.hgtv.com/shows/fixer-upper">Fixer Upper</a></li><li><a target="_blank" href="https://www.britbox.com/us/show/Jonathan_Creek_6633?gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeVW0MzpMdDfCFNh-n38iSw3FJJxrDEafVJS1Co75I_bEGjrVnkGgSQaAuQQEALw_wcB">Jonathon Creek</a></li></ul><hr /><h1 class="text-align-center"><strong>Other Reccomendations</strong></h1><hr /><ul dir="ltr"><li><a target="_blank" href="https://glowforge.com/?utm_source=google&utm_medium=cpc&utm_campaign=brand&utm_source=adwords&utm_medium=cpc&utm_campaign=Brand-Exact-Geo-US-GP&utm_term=glow_forge&gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeUmtTZhuE_p9u2qxrHvkXWtvGSyz3mrWT5Bz-um-Gf5w74w11VX504aAjKIEALw_wcB">Glowforge</a></li><li>Facebook Support Groups</li><li><a target="_blank" href="http://www.instagram.com">Instagram</a></li><li><a target="_blank" href="http://www.pinterest.com">Pinterest</a></li><li><a target="_blank" href="http://flaredown.com/">FlareDown</a></li></ul><hr /> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Chronic Fatigue and The Monday That Changed Everything A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Listen this week to Invisible Not Broken Interview Spoonie Blogger Frances (Fancy Like That) We talk about her Chronic Fatigue Syndrome (now called CFS or ME) and how your entire life and goals can change on a Monday. Give a listen to find out how to make and keep a life even when on bedrest.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:05:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a85c1cc652dea4d51029726/1519078215875/1500w/chronic-fatigue-CFS-ME-Chronic-Illness-Podcast.jpg"/><itunes:title>Chronic Fatigue Is Not Being Tired A Chronic Illness Podcast </itunes:title><content:encoded><![CDATA[<p><strong>What is your disorder? </strong>*</p><p><a target="_blank" href="https://www.cdc.gov/me-cfs/index.html">CFS</a> (and<a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439"> PCOS</a>) Please read Frances' blog post about CFS at her blog <a target="_blank" href="https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html">F</a>ancy Like That and follow all of her social media I spent close to stalker-like hours on her Pinterest page.</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>24</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I was a quote-unquote 'normal' twenty-something with a lot of plans</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I would probably be working hard on my career and I would spend most of my spare time painting and be decorating our new house (instead of directing my partner to do it from the sofa...)</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Although it may seem like fun and games to be permanently having a sick day, it gets boring fast... especially when you don't always even have the brain capacity to do things like binge-watch great TV shows and read books that have been on your to-read pile forever. I'm currently working on a programme with my CFS clinic to raise my energy levels and while that is working it also means I have to take 15-minute breaks every half hour, no matter what, and I think that can be difficult for people to understand too.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>More energy! Ha. But seriously... since diving (slash being dunked) into the world of invisible illnesses I think the biggest thing that would make a difference for me is just more understanding - by doctors and the general public - of invisible illnesses and of how to talk to the people dealing with them.</p><p><strong>Do you have any life hacks? *</strong></p><p>Join a Facebook group! I wasn't sold on going to the support group my doctor found because of the travel and general energy usage it would involve, but I've felt a lot less alone since finding so many places online where I can talk to other people who have the same issues as me and actually understand what I mean when I say I'm having a bad day etc. I'm also really into bullet journaling at the moment - it's a great creative outlet for me (although it doesn't have to be decorative to work!) and I find it so helpful to have everything laid out in ways that make sense to me.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>I'm incredibly lucky to have a bunch of amazingly supporting friends and family and my boyfriend, who I live with. The best kind of support is when people say that they've read up on your illness or ask questions that show they're really trying to understand. Having said that, I also really value the friends I have who don't bring it up at all unless I do - sometimes you need to be taken out of the chronic illness bubble and gossip about so-and-so's latest Instagram post or whatever and forget about everything for a while.</p><p>Have you ever had someone not believe you have an invisible illness because of your appearance? *</p><p>Not yet... and touch wood never. I've had people say to me that I look 'better' or 'well', but in context, they generally mean in comparison to when they last saw me (usually this only happens when I bother to put makeup on and/or do something with my hair other than my now-signature pineapple bun)</p><p><strong>Has this been a positive or negative experience? *</strong></p><p>It doesn't make me feel great, but I know that they mean well - I just need to work out a way to tell them that I'd rather not hear it without being rude!</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I've definitely had to change the way that I think about certain relationships. I'm usually someone who takes on the 'Organiser' role in friendship groups, and I've had to tell myself to step back from that because I know that logistics and things are going to drain my energy. And in my relationship with my boyfriend, I have to work hard not to feel like we've gone from equal partners to carer and patient sometimes, especially on my worse days when he not only has to go to work while I stay home, but also comes home and does all of the cooking and cleaning, plus looks after all of our pets. And when he goes away - on holiday with his friends, or for work - if it's for more than a couple of days I have to have my parents come to stay with me or go to them because it's too much to try and keep myself and the house going on my own for too long. I think for me the key is talking about that kind of stuff with the people involved and reminding myself constantly that they're doing it because they love me and not because they think I'm incapable. With my boyfriend, we've recently started having set-aside 'date nights' in the week, which is something I always thought was a bit cheesy before, but now it's good for us as a time to really spend time as a couple.</p><p><strong>Is there anything you are afraid to tell even the people closest to you? *</strong></p><p>Sometimes I'll try to hide how bad I'm feeling - emotionally and/or physically - but I'm trying to avoid doing that... it always comes out anyway, and it's not good for me to bottle things up!</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? *</strong></p><p>Yes and no. I'm in a weird place where <a target="_blank" href="https://www.cdc.gov/me-cfs/index.html">CFS/ME</a> is sort of 'in vogue' at the moment - there have been a few features about it on the news and radio recently in the UK, so my doctors are keen for me to understand that they understand. However, I do find it difficult sometimes to go to appointments alone, especially when my brain fog is particularly active, and I've had difficulty in the pat conveying that to doctors.</p><p><strong>What is your best coping mechanism? *</strong></p><p>Humour, usually of the gallows variety, and listening to podcasts - usually about true crime.</p><p><strong>What are you the most fearful of and hopeful for in the future? *</strong></p><p>I'm hopeful that I'll find a way to manage my symptoms and that I can turn this whole period of my life into something positive and productive. I'm fearful of having a relapse into worse symptoms, and of my loved ones getting bored of my limitations.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck (ideally followed by 'you', 'it', or 'off')</p><p><strong>Is there anything you want to make sure we talk about during the interview? </strong>Like an organization you want to promote or something specific that you deal with.</p><p>I'd love you to push my <a target="_blank" href="https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html">blog</a> if possible!! I'm planning a series of CFS-related posts alongside my usual blather</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>It's made me very aware of my privileges when it comes to healthcare and having a support network, and spending so much time stuck in my own head has also made me get to know myself a lot better, too!</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p>My <a target="_blank" href="http://www.netflix.com">Netflix</a> subscription, a decent firm pillow, and bed socks</p><p>FAVORITE SHOWS</p><p><a target="_blank" href="http://www.cwtv.com/shows/crazy-ex-girlfriend/">Crazy Ex-Girlfriend</a></p><p><a target="_blank" href="https://www.britbox.com/us/show/Escape_to_the_Country_15521?gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeXRNhZZiDfIx7qNmI7ZQy70c7_A1g0q9-Ts6SqpO8l3IzDmPzkDD0IaAq_uEALw_wcB">Escape To The Country</a></p><p><a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a></p><p><a href="http://www.bbc.co.uk/programmes/b00gbbl0">Lark Rise To Candleford</a></p><p><a target="_blank" href="http://www.hgtv.com/shows/fixer-upper">Fixer Upper</a></p><p><a target="_blank" href="https://www.britbox.com/us/show/Jonathan_Creek_6633?gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeVW0MzpMdDfCFNh-n38iSw3FJJxrDEafVJS1Co75I_bEGjrVnkGgSQaAuQQEALw_wcB">Jonathon Creek</a></p><p>OTHER SPOONIE BEDREST SURVIVAL RECCOMENDATIONS</p><p><a target="_blank" href="https://glowforge.com/?utm_source=google&utm_medium=cpc&utm_campaign=brand&utm_source=adwords&utm_medium=cpc&utm_campaign=Brand-Exact-Geo-US-GP&utm_term=glow_forge&gclid=Cj0KCQiA_JTUBRD4ARIsAL7_VeUmtTZhuE_p9u2qxrHvkXWtvGSyz3mrWT5Bz-um-Gf5w74w11VX504aAjKIEALw_wcB">Glowforge</a></p><p>Facebook Support Groups</p><p><a target="_blank" href="http://www.instagram.com">Instagram</a></p><p><a target="_blank" href="http://www.pinterest.com">Pinterest</a></p><p><a target="_blank" href="http://flaredown.com/">FlareDown</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a8a2423ec212d1cb4bb75ec/1519002875183/CFS-ME-PCOS_Podcast.mp3" length="92733985" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a8a2423ec212d1cb4bb75ec/1519002875183/CFS-ME-PCOS_Podcast.mp3" length="92733985" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Chronic Fatigue Is Not Being Tired A Chronic Illness Podcast </media:title></media:content></item><item><title>Disability and Travel International Ideas, Frustrations, and Tips from Spoonies Who Have Been There {Chronic Illness Podcast)</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 12 Feb 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/2/10/disability-and-travel-international-ideas-frustrations-and-tips-from-spoonies-who-have-been-there-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a7f7e3753450a4981fe79c5</guid><description>Click to Listen To Chronic Illness Podcast All About Chronic Pain &Travel</description><content:encoded><![CDATA[<form method="POST" data-form-id="5a7f82cee4966bd4a4025b82" autocomplete="on" onsubmit="return (function(form) { Y.use | |
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| <p>So <a href="http://invisiblenotbroken.com/home?tag=Bear">Kyros</a> just got back from traveling overseas and came back to talk all about disability and travel.</p><h1 class="text-align-center">Recommendations</h1><hr /><p><a target="_blank" href="https://www.cbp.gov/travel/trusted-traveler-programs/global-entry">Global Entry</a></p><p>Compression Socks</p><p> </p><h3>What are your best tips for traveling? Tweet <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a> or comment below</h3>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Disability and Travel International Ideas, Frustrations, and Tips from Spoonies Who Have Been There {Chronic Illness Podcast)</itunes:subtitle><itunes:summary>So Kyros just got back from traveling overseas and came back to talk all about disability and travel. He traveled all over Europe and India and has so much to say about disability and travel. He will be doing a long running blog series all about his travels.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>53:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a7f7e3753450a4981fe79c5/1518445810452/1500w/IMG_3271.PNG"/><itunes:title>International Travel & Disability A Spoonie Journey</itunes:title><content:encoded><![CDATA[<p><a target="_blank" href="https://www.cbp.gov/travel/trusted-traveler-programs/global-entry">Global Entry</a></p><p><a target="_blank" href="https://www.rejuvahealth.com/?gclid=Cj0KCQiAzfrTBRC_ARIsAJ5ps0swHOf_lh_ka_egH1VblQK2gBGqqlRgxls5CcUKhikLwkT8LjpbEQEaArdEEALw_wcB">Compression Socks</a></p><p> </p><h3>What are your best tips for traveling? Tweet <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a> or comment below</h3>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a7f7e3b9140b73f5d125f5c/1518304968030/Travel+and+Disability.mp3" length="75365273" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a7f7e3b9140b73f5d125f5c/1518304968030/Travel+and+Disability.mp3" length="75365273" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">International Travel & Disability A Spoonie Journey</media:title></media:content></item><item><title>Chronic Pain, Opioid Crisis, and Medical Marijuana a Conversation with Karina Strum</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 05 Feb 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/2/4/opioid-crisis-medical-marijuana-chronic-pain-karina-strum-interview-monica-michelle-ehlers-danlos</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a775453ec212dda58429ec6</guid><description>Thank you Karina Strum for interviewing me about my daily life with chronic | |
| pain, opioids, and medical marijuana. Please click title to get a look at | |
| the opioid crisis through the eyes and experiance of a person in daily | |
| chronic pain with Ehlers Danlos.</description><content:encoded><![CDATA[<p>You might remember <a target="_blank" href="http://invisiblenotbroken.com/home/2017/10/25/edsmca-pots-and-the-ever-expanding-acronyms-socialized-medicine-medical-marijuana-uber-we-have-an-idea-for-you-chronic-illness-serial-podcast">Karina Strum</a>, if you don’t here is her interview. This is where I got the tables reversed and she interviewed me about my daily life which absolutely includes daily dislocations, opioids, medical marijuana, and daily fear that a government and overzealous media will make getting the medication I need for daily survival harder or impossible to access. Along with the audio I’m including the video, no judgment on my messy room.</p><p>Please check out Karina Strum's<a target="_blank" href="http://www.karina-sturm.com/en/"> blog</a></p><p> </p><iframe scrolling="no" allowfullscreen="" src="//www.youtube.com/embed/6rmhlXX2qTY?feature=youtu.be&wmode=opaque&enablejsapi=1" width="854" frameborder="0" height="480"> | |
| </iframe><p>If you are interested here is Kyros and my panel about <a target="_blank" href="http://invisiblenotbroken.com/home/opioid-epedemic-chronic-pain-management">pain management</a> and the opioid crisis and here is our about page if you would like to learn more <a target="_blank" href="http://invisiblenotbroken.com/about-me-2/">about us</a> and our medical conditions. </p> | |
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| </form>]]></content:encoded><itunes:author>Karina Strum/ Invisible Not Broken</itunes:author><itunes:subtitle>Karina Strum interviews Monica Michelle about Medical Marijuana, Chronic Pain, Opioids, and Ehlers Danlos Syndrome </itunes:subtitle><itunes:summary>Karina Strum interviews Monica Michelle about daily life with Medical Mariuana, Chronic Pain, Opioids, and Ehlers Danlos Syndrome </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>16:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a775453ec212dda58429ec6/1517841057328/1500w/IMG_5683.JPG"/><itunes:title>Chronic Pain, Opioid Crisis, and Medical Marijuana a Chronic Illness Podcast </itunes:title><content:encoded><![CDATA[<p>You might remember <a target="_blank" href="http://invisiblenotbroken.com/home/2017/10/25/edsmca-pots-and-the-ever-expanding-acronyms-socialized-medicine-medical-marijuana-uber-we-have-an-idea-for-you-chronic-illness-serial-podcast">Karina Strum</a>, if you don’t here is her interview. This is where I got the tables reversed and she interviewed me about my daily life which absolutely includes daily dislocations, opioids, medical marijuana, and daily fear that a government and overzealous media will make getting the medication I need for daily survival harder or impossible to access. Along with the audio I’m including the video, no judgment on my messy room.</p><p>Please check out Karina Strum's<a target="_blank" href="http://www.karina-sturm.com/en/"> blog</a></p><p>If you are interested here is Kyros and my panel about <a target="_blank" href="http://invisiblenotbroken.com/home/opioid-epedemic-chronic-pain-management">pain management</a> and the opioid crisis and here is our about page if you would like to learn more <a target="_blank" href="http://invisiblenotbroken.com/about-me-2/">about us</a> and our medical conditions. </p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a7755beec212dda5842f0e5/1517770247268/Opioid-crisis-medical+marijuana-chronic-pain-Karina-Strum-Interviews-Monica-Michelle-Ehlers-Danlos.mp3" length="30676542" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a7755beec212dda5842f0e5/1517770247268/Opioid-crisis-medical+marijuana-chronic-pain-Karina-Strum-Interviews-Monica-Michelle-Ehlers-Danlos.mp3" length="30676542" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Chronic Pain, Opioid Crisis, and Medical Marijuana a Chronic Illness Podcast </media:title></media:content></item><item><title>Work, Disability, and the Spoonie Life {A Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 29 Jan 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/1/26/disability-work-spoonielife-chronic-illness-podcast-invisible-illness-blog</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a6bb3458165f5e669bf63d5</guid><description>Click Title To Listen To This Week's Pane Discussion on Disabliity and Work</description><content:encoded><![CDATA[<ul><li>Disability, staying home, guilt, and screwing with the feminist agenda.</li><li>Trying to get over "letting down" the people in your life by staying home for disability.</li><li>Some behind the scenes of what happened when Monica Michelle had to shut down her Menlo Park photography studio.</li><li>Trying to justify your day when you stay home every day.</li><li>Spoon theory and getting to work using public transportation which is not accessible for all, BART calling you out on your pointless elevators. This is one of the BIG reasons MANY disabled people CANNOT work.</li><li>Why people are dragging themselves through work when their bodies no longer work: Insurance, Retirement, and the huge hole between what disability pays and how much you will need for basic living.</li><li>Privilege, disability, and working. Do you have a position and company policies that let you do what you need to feel better, take time off for flares, and Dr. appointments?</li><li>What happens when your medication is not legal for you to take because of your job.</li><li>Can you get work RESPECT when you are in a wheelchair? Is the workplace accessible to get around with canes and wheelchairs? Enough handicap parking spaces? </li><li>SERIOUS words of respect for teenagers dealing with mental and physical disability in high school and college.</li><li>Businesses, before you call yourself accessible borrow a wheelchair and try to do everything needed THEN tell me if you are accessible. </li><li>Fooling yourself on your abilities after a few "good days"</li><li>Staying home is not a choice most of us would make.</li></ul> | |
| <h2 class="text-align-center">Show Links</h2><p dir="ltr" class="text-align-center"><a target="_blank" href="https://www.healthcare.gov/glossary/affordable-care-act/">ACA </a> Low-Cost<a target="_blank" href="https://www.goodrx.com/"> Perscription APP Good RX</a></p><p dir="ltr" class="text-align-center"><a target="_blank" href="https://dailyaction.org/">Activism on Your Phone Don't Wine Text Your Representatives!</a></p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Myths, Issues, and the Unexpected When You Are Disabled And Working A Chronic Illness Podcast</itunes:subtitle><itunes:summary>Disability, staying home, guilt, and screwing with the feminist agenda. | |
| Trying to get over "letting down" the people in your life by staying home for disability. | |
| Some behind the scenes of what happened when Monica Michelle had to shut down her Menlo Park photography studio. | |
| Trying to justify your day when you stay home every day. | |
| Spoon theory and getting to work using public transportation which is not accessible for all, BART calling you out on your pointless elevators. This is one of the BIG reasons MANY disabled people CANNOT work. | |
| Why people are dragging themselves through work when their bodies no longer work: Insurance, Retirement, and the huge hole between what disability pays and how much you will need for basic living. | |
| Privilege, disability, and working. Do you have a position and company policies that let you do what you need to feel better, take time off for flares, and Dr. appointments? | |
| What happens when your medication is not legal for you to take because of your job. | |
| Can you get work RESPECT when you are in a wheelchair? Is the workplace accessible to get around with canes and wheelchairs? Enough handicap parking spaces? | |
| SERIOUS words of respect for teenagers dealing with mental and physical disability in high school and college. | |
| Businesses, before you call yourself accessible borrow a wheelchair and try to do everything needed THEN tell me if you are accessible. | |
| Fooling yourself on your abilities after a few "good days" | |
| Staying home is not a choice most of us would make. | |
| Show Links | |
| ACA Low-Cost Perscription APP Good RX | |
| Activism on Your Phone Don't Wine Text Your Representatives!</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>0:59:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a6bb3458165f5e669bf63d5/1517293337091/1500w/IMG_5605.JPG"/><itunes:title>Work, Disability, and the Spoonie Life: Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<p>Disability, staying home, guilt, and screwing with the feminist agenda.</p><h2>Show Links</h2><p><a target="_blank" href="https://www.healthcare.gov/glossary/affordable-care-act/">ACA </a> Low-Cost<a target="_blank" href="https://www.goodrx.com/"> Perscription APP Good RX</a></p><p><a target="_blank" href="https://dailyaction.org/">Activism on Your Phone Don't Wine Text Your Representatives!</a></p><p>Trying to get over "letting down" the people in your life by staying home for disability.</p><p>Some behind the scenes of what happened when Monica Michelle had to shut down her Menlo Park photography studio.</p><p>Trying to justify your day when you stay home every day.</p><p>Spoon theory and getting to work using public transportation which is not accessible for all, BART calling you out on your pointless elevators. This is one of the BIG reasons MANY disabled people CANNOT work.</p><p>Why people are dragging themselves through work when their bodies no longer work: Insurance, Retirement, and the huge hole between what disability pays and how much you will need for basic living.</p><p>Privilege, disability, and working. Do you have a position and company policies that let you do what you need to feel better, take time off for flares, and Dr. appointments?</p><p>What happens when your medication is not legal for you to take because of your job.</p><p>Can you get work RESPECT when you are in a wheelchair? Is the workplace accessible to get around with canes and wheelchairs? Enough handicap parking spaces? </p><p>SERIOUS words of respect for teenagers dealing with mental and physical disability in high school and college.</p><p>Businesses, before you call yourself accessible borrow a wheelchair and try to do everything needed THEN tell me if you are accessible. </p><p>Fooling yourself on your abilities after a few "good days"</p><p>Staying home is not a choice most of us would make.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a6e5c50f9619a15b612e303/1517182285809/Work+%26+Disability.mp3" length="83996339" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a6e5c50f9619a15b612e303/1517182285809/Work+%26+Disability.mp3" length="83996339" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Work, Disability, and the Spoonie Life: Chronic Illness Podcast</media:title></media:content></item><item><title>Searching For A Diagnosis Prescious My Prescious: A Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 22 Jan 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/searching-for-a-chronic-illness-diagnosis-chronic-illness-podcast-invisible-illness-blog</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a651404652dea6b6a22c2dd</guid><description>Click Title To Listen To This Weeks Episode About Searching For A Chronic | |
| Illness Diagnosis</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b153450a34f4e9b461/1516575745044/when-tests-show-youre-normal-chronic-illness-podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Searching for a diagnosis: A Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b153450a34f4e9b461/1516575745044/when-tests-show-youre-normal-chronic-illness-podcast.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b1419202c75ac89a99/1516575865752/searching-for-a-diagnosis-on-dr-house-chronic-illness-podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Searching for a diagnosis a chronic illness podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b1419202c75ac89a99/1516575865752/searching-for-a-diagnosis-on-dr-house-chronic-illness-podcast.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b2f9619a267927b836/1516575893923/how-to-help-the-spoonie-in-your-life-chronic-illness-podcast.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="How To Help A Friend With A Chronic Illness: A Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a6515b171c10b2e8a4ca7cb/5a6515b2f9619a267927b836/1516575893923/how-to-help-the-spoonie-in-your-life-chronic-illness-podcast.jpg?format=1000w" /><br> | |
| <h1 class="text-align-center">Show Notes For This Weeks Chronic Illness Podcast</h1><hr /><ul><li>What it’s like when ALL your medical tests show you are the healthiest sick person</li><li>Oh that’s a thing and the amazing crazy things your body can do with chronic illness</li><li>You know that feeling when you can’t breathe…yay like that most of the time</li><li>Is it Prednisone or is it LSD?</li><li>Show & Tell Can Go Horribly Wrong With Chronic Illness</li><li>No Diagnosis means no protocol</li><li>Searching for a Diagnosis on Dr. House …It’s Not Lupus, right?</li><li>Chronic Illness Diagnosis hunting worst, most expensive, and time-consuming hobby</li><li>The loneliness Of Not Having A Diagnosis</li><li>Land Of Opportunity Only Counts If Everyone Can Get Health Insurance ( A Small business perspective)</li><li>If you have anxiety already your new symptoms are NOT anxiety. You know when it is different.</li><li>Seriously Trying to keep up with all the symptoms The entire body went into revolt</li><li>Spin classes a religion be NICE when someone runs out</li><li>Gluten Free does not mean that you are THAT person </li><li>What to do to Take Care Of The Chronically Ill Person In Your Life if You want to do more than “thinking of You”</li><li>Hormones Strike Again Periods & Chronic Illness </li><li>Whats powering through and what is self-sabotage </li><li>Cats As Relaxation Gurus</li><li>If you are going to search for a diagnosis you should get medical school credit</li><li>Protocol For Taking Care Of Chronically Ill Friends (Originally Made For a Community To Help Cancer Patients during radiation and chemo)</li></ul><hr /><h1 class="text-align-center">Links </h1><hr /><p><a target="_blank" href="https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/ana-testing/?gclid=Cj0KCQiAkZHTBRCBARIsAMbXLhEQSHsCC3s8QNMKZfq9mL4r9uWNPyRWPciacxgOSsZInXgsHI17644aAjyPEALw_wcB">Lupus Test</a></p><p><a target="_blank" href="https://www.webmd.com/drugs/2/drug-6007-9383/prednisone-oral/prednisone-oral/details">Predizone Effects</a></p><p><a target="_blank" href="https://store.google.com/product/google_home">Google Speak</a></p><p><a target="_blank" href="https://www.google.com/drive/">Google Drive</a></p><hr /><p><strong>What is your disorder?</strong> *</p><p>undiagnosed</p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>20</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>Before my big flare last year I was always busy- childhood through adulthood. I love being busy and feeling productive. I teach special education full time and was teaching between 5-10 classes per week at the gym on top of that, not to mention my two workouts. Over the last year or two, my energy levels and health fluctuated often and began to crash last November. I probably was fading before that but was unable to notice. I think I started to realize how sick I was when it was finally confirmed that I was sick and the symptoms were not from depression. Once I knew that my inability to push through was because my body is most likely attacking itself in one way or another,<strong> I realized I had been pushing through exhaustion for quite a while. I was under the impression that I was becoming unmotivated and lazy.</strong></p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>If I were not dealing with an invisible illness I would still be teaching at the gym and doing intense workouts for sure. I LOVE taking fitness classes and trying new styles. I haven’t been able to do cardio or lift “heavy” in about 7 months and my strength and endurance have decreased significantly in that span as well. Fitness was something I found when I moved home after graduation. Moving back in with my parents, I needed to find an outlet. To be honest, I’ve tried to let go of a lot of the thoughts about what I’ve “lost” and focus on what I’ve gained. I also am trying to believe I haven’t truly “lost” anything, but that I’m in a moment of flare and hopefully can find a happy medium in the future. Had I not had to slow down I would not have discovered new passions I have explored. Lately, I have been trying to combine my love for fitness with my passion for photography. I’ve had great opportunities to do photo shoots for a friend of mine at her fitness studio, Garage Girl Fitness.</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>This is a hard one! I guess I would tell people that I’m sorry if I ever bailed on you last minute or have seemed flakey. My symptoms are so unpredictable from day to day that it is hard for me to commit to plans far in advance. So much of my energy goes to work that it is hard to accomplish much else than the school day sometimes. I have not discovered my happy medium yet and still seem to overdo it on good days leading to very drained days shortly afterward, which is probably why it is so confusing and hard for others to understand- or at least why I’m paranoid they don’t understand. I get scared people may feel I am faking it when a bad day follows a great day. I’m high energy one day (and by high energy, I still mean about 1/10th of the amount I was able to have and sustain in the past) and can barely keep my eyes open or stand up for more than a few minutes the next. I want everyone to know that if I did cancel on them, that it took a lot of preventative care prior in order to make that decision. I most likely rested and implemented various other self-care practices even more than usual leading up to the event whether it be a lunch date or a formal event.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Something that could sort and put away my laundry for me!</p><p><strong>Do you have any life hacks?</strong> *</p><p><a href="https://www.google.com/drive/">Google Drive!</a> Google Drive has been a lifesaver. We started using it at work last year and I realized how useful it is.<strong> I am able to upload all of my test results etc</strong>. to a drive and share access with my doctors. Being undiagnosed, I've seen so many different kinds of specialists that each has their own opinions. My primary care is through a local hospital so I began with staying "in network" and utilizing their specialists. As much as I hoped that they would all work out, I'm currently looking into finding a rheumatologist in Boston. Being so close to some of the best hospitals in the world, I figure it is silly to not utilize those resources. My "key player" has been a naturopath/functional medicine doctor in New Hampshire. She is not in the same network as my primary care so the google drive has been very useful. I've been able to track my symptoms, diet, activity level, etc. on a spreadsheet that my naturopath is able to check it at any time. She's actually emailed me on a Sunday to clarify something!</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>I will be honest, I'm VERY bad at asking for help and I like to think I am good at putting on a front. The first thing that comes to mind isn't what one usually expects, but I am the luckiest person in the world for having the landlords that I have. They have two dogs that I have over all the time, which is amazing. It's like I have dogs but do not have to worry about being home for them, vet bills, etc. But honestly, that is the least of it. They do so many things to take care of me and I'm not sure I would make it without them. <strong>There have been days when I am so sick I cannot even handle the stairs never mind driving myself anywhere. </strong>They've left me <a target="_blank" href="https://themighty.com/2017/10/chronic-illness-crisis-kit-products-emergencies-flare-ups/">Gatorade </a>and crackers or prescriptions at my door when I'm too sick to function. They remind me when my oil may be getting low, get me back in when I've locked myself out, plow the driveway when it snows, Ranee has even broken in to wake me up when I overslept! I'm not saying that my other friends and family are not helpful, this is just the most unexpected and lucky form of helpful I have in my life :) I have close friends from high school and college and they are always here to check in, talk, etc. Now that we are all scattered it's a bit more difficult to be around each other in person, especially since I'm pretty spent just after getting ready some days! But no matter what they are always here for me and things never change when we see each other. My friend and personal trainer Rose has been an amazing friend and support system as well. She has built an amazing atmosphere at her fitness studio making me and others feel comfortable at all times. I cannot believe the relationships we have built and truly feel I have found family here. My family, of course, helps as well! I do, however, feel like I downplay how I am feeling at times because I'm scared they will worry, therefore I'm not sure they are always aware of the help I may need. It's not that I am not close, honest, or open with them, I just don't have any answers and I know my mother's reaction will be question after question after question so at times I feel like I may as well tell her AFTER it is figured out when I have a response versus in the moment and having to use my remaining energy to calm HER down.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? *</strong></p><p>I don't think so...not that anyone has brought to my attention. I do get self-conscious using the elevator at work sometimes though. I integrate my students in and out of the general education classroom and we walk back and forth from the first to third floor often. I held out for as long as possible but have now begun to use the elevator on tougher days.</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>There are positives and negatives. Like I mentioned before, I do feel I have much positive to focus on despite the negative that has and is happening. I have been able to find and explore new passions as well as embrace my students and teaching job in a new way. Many of my students are very picky with food, as this is common with <a target="_blank" href="https://www.autismspeaks.org/family-services/health-and-wellness/nutrition/seven-ways-help-picky-eater-autism">Autism</a>. When children are picky to a point that they will not eat things due to texture or sensory reasons they can develop deficiencies etc. just like any other person can. I've been using my "<a target="_blank" href="https://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome#1">leaky gut</a>" and change of lifestyle as a teachable moment for my kids. We do a nutrition unit a couple times a week using the MyPlate model. I've watched two of them start to try school lunch after eating the same exact lunch day in and day out since the day they started school at 3 (they are now 8!). I stood in the cafeteria taking pictures of them in line like a proud mom!</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>I think it has in the fact that I have not seen people as often in person. But I am still navigating the social life while sick piece so I try not to come to any hasty conclusions before I rule out any of my faults first.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>Oh boy......honestly I will have to think about this one leading up to when we speak later :)</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>I think the biggest piece that made/makes healthcare professionals treat me differently is my mental health past. <strong>There are so many symptoms that are due to chronic illness (not mental) that were written off as part of my anxiety, previous eating disorder, depression etc.</strong> To me, my history with these things should make my opinion even more valid that the symptoms are not part of it. I can tell the difference between the two now and wish that knowledge could be used to my benefit versus a write-off.</p><p><strong>What is your best coping mechanism?</strong> *</p><p>My best coping mechanism lately is photography. It helps me accomplish a form of meditation- getting me out of my own head and into the moment.</p><p><strong>What are you the most fearful of and hopeful for in the future?</strong> *</p><p>I guess I'm most fearful that things will never calm down. It's hard to watch all of your friends getting engaged and married, starting families, buying homes, etc. while I'm trying to figure out if there's a way I can get insurance to cover <a target="_blank" href="https://www.zyrtec.com/products/zyrtec-d">Zyrtec D </a>so that I'm not spending $30+ a month on just one of my medications. So much of my money and time goes into my health I just hope that I find an equilibrium soon so that I can even just begin to think about planning, saving, etc.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck :) My weakness as a teacher is also when students swear. When kids swear I can't help but laugh!</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p><strong>I would love to mention my friend's studio <a target="_blank" href="https://garagegirlfitness.info/">Garage Girl Fitness</a> if possible as it has been a huge resource and support system for me :)</strong></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I guess the hardest and best lesson I have learned is how strong I actually used to be. I truly had no idea of the strength my body had until it began to somewhat crash.</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A look at what it is like to be sick and searching for a diagnosis in the US healthcare system</itunes:subtitle><itunes:summary>What it’s like when ALL your medical tests show you are the healthiest sick person | |
| Oh that’s a thing and the amazing crazy things your body can do with chronic illness | |
| You know that feeling when you can’t breathe…yay like that most of the time | |
| Is it Prednisone or is it LSD? | |
| Show & Tell Can Go Horribly Wrong With Chronic Illness | |
| No Diagnosis means no protocol | |
| Searching for a Diagnosis on Dr. House …It’s Not Lupus, right? | |
| Chronic Illness Diagnosis hunting worst, most expensive, and time-consuming hobby | |
| The loneliness Of Not Having A Diagnosis | |
| Land Of Opportunity Only Counts If Everyone Can Get Health Insurance ( A Small business perspective) | |
| If you have anxiety already your new symptoms are NOT anxiety. You know when it is different. | |
| Seriously Trying to keep up with all the symptoms The entire body went into revolt | |
| Spin classes a religion be NICE when someone runs out | |
| Gluten Free does not mean that you are THAT person | |
| What to do to Take Care Of The Chronically Ill Person In Your Life if You want to do more than “thinking of You” | |
| Hormones Strike Again Periods & Chronic Illness | |
| Whats powering through and what is self-sabotage | |
| Cats As Relaxation Gurus | |
| If you are going to search for a diagnosis you should get medical school credit | |
| Protocol For Taking Care Of Chronically Ill Friends (Originally Made For a Community To Help Cancer Patients during radiation and chemo) | |
| Lupus Test | |
| Predizone Effects | |
| Google Speak | |
| Google Drive</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:02:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a651404652dea6b6a22c2dd/1516631412645/1500w/when-tests-show-youre-normal-chronic-illness-podcast.jpg"/><itunes:title>What Happens When All Your Tests Show That You Are the Healthiest Sick Person A Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<p> </p><p><strong>What is your disorder?</strong> *</p><p>undiagnosed</p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>20</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>Before my big flare last year I was always busy- childhood through adulthood. I love being busy and feeling productive. I teach special education full time and was teaching between 5-10 classes per week at the gym on top of that, not to mention my two workouts. Over the last year or two, my energy levels and health fluctuated often and began to crash last November. I probably was fading before that but was unable to notice. I think I started to realize how sick I was when it was finally confirmed that I was sick and the symptoms were not from depression. Once I knew that my inability to push through was because my body is most likely attacking itself in one way or another,<strong> I realized I had been pushing through exhaustion for quite a while. I was under the impression that I was becoming unmotivated and lazy.</strong></p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>If I were not dealing with an invisible illness I would still be teaching at the gym and doing intense workouts for sure. I LOVE taking fitness classes and trying new styles. I haven’t been able to do cardio or lift “heavy” in about 7 months and my strength and endurance have decreased significantly in that span as well. Fitness was something I found when I moved home after graduation. Moving back in with my parents, I needed to find an outlet. To be honest, I’ve tried to let go of a lot of the thoughts about what I’ve “lost” and focus on what I’ve gained. I also am trying to believe I haven’t truly “lost” anything, but that I’m in a moment of flare and hopefully can find a happy medium in the future. Had I not had to slow down I would not have discovered new passions I have explored. Lately, I have been trying to combine my love for fitness with my passion for photography. I’ve had great opportunities to do photo shoots for a friend of mine at her fitness studio, Garage Girl Fitness.</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>This is a hard one! I guess I would tell people that I’m sorry if I ever bailed on you last minute or have seemed flakey. My symptoms are so unpredictable from day to day that it is hard for me to commit to plans far in advance. So much of my energy goes to work that it is hard to accomplish much else than the school day sometimes. I have not discovered my happy medium yet and still seem to overdo it on good days leading to very drained days shortly afterward, which is probably why it is so confusing and hard for others to understand- or at least why I’m paranoid they don’t understand. I get scared people may feel I am faking it when a bad day follows a great day. I’m high energy one day (and by high energy, I still mean about 1/10th of the amount I was able to have and sustain in the past) and can barely keep my eyes open or stand up for more than a few minutes the next. I want everyone to know that if I did cancel on them, that it took a lot of preventative care prior in order to make that decision. I most likely rested and implemented various other self-care practices even more than usual leading up to the event whether it be a lunch date or a formal event.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Something that could sort and put away my laundry for me!</p><p><strong>Do you have any life hacks?</strong> *</p><p><a href="https://www.google.com/drive/">Google Drive!</a> Google Drive has been a lifesaver. We started using it at work last year and I realized how useful it is.<strong> I am able to upload all of my test results etc</strong>. to a drive and share access with my doctors. Being undiagnosed, I've seen so many different kinds of specialists that each has their own opinions. My primary care is through a local hospital so I began with staying "in network" and utilizing their specialists. As much as I hoped that they would all work out, I'm currently looking into finding a rheumatologist in Boston. Being so close to some of the best hospitals in the world, I figure it is silly to not utilize those resources. My "key player" has been a naturopath/functional medicine doctor in New Hampshire. She is not in the same network as my primary care so the google drive has been very useful. I've been able to track my symptoms, diet, activity level, etc. on a spreadsheet that my naturopath is able to check it at any time. She's actually emailed me on a Sunday to clarify something!</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>I will be honest, I'm VERY bad at asking for help and I like to think I am good at putting on a front. The first thing that comes to mind isn't what one usually expects, but I am the luckiest person in the world for having the landlords that I have. They have two dogs that I have over all the time, which is amazing. It's like I have dogs but do not have to worry about being home for them, vet bills, etc. But honestly, that is the least of it. They do so many things to take care of me and I'm not sure I would make it without them. <strong>There have been days when I am so sick I cannot even handle the stairs never mind driving myself anywhere. </strong>They've left me <a target="_blank" href="https://themighty.com/2017/10/chronic-illness-crisis-kit-products-emergencies-flare-ups/">Gatorade </a>and crackers or prescriptions at my door when I'm too sick to function. They remind me when my oil may be getting low, get me back in when I've locked myself out, plow the driveway when it snows, Ranee has even broken in to wake me up when I overslept! I'm not saying that my other friends and family are not helpful, this is just the most unexpected and lucky form of helpful I have in my life :) I have close friends from high school and college and they are always here to check in, talk, etc. Now that we are all scattered it's a bit more difficult to be around each other in person, especially since I'm pretty spent just after getting ready some days! But no matter what they are always here for me and things never change when we see each other. My friend and personal trainer Rose has been an amazing friend and support system as well. She has built an amazing atmosphere at her fitness studio making me and others feel comfortable at all times. I cannot believe the relationships we have built and truly feel I have found family here. My family, of course, helps as well! I do, however, feel like I downplay how I am feeling at times because I'm scared they will worry, therefore I'm not sure they are always aware of the help I may need. It's not that I am not close, honest, or open with them, I just don't have any answers and I know my mother's reaction will be question after question after question so at times I feel like I may as well tell her AFTER it is figured out when I have a response versus in the moment and having to use my remaining energy to calm HER down.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? *</strong></p><p>I don't think so...not that anyone has brought to my attention. I do get self-conscious using the elevator at work sometimes though. I integrate my students in and out of the general education classroom and we walk back and forth from the first to third floor often. I held out for as long as possible but have now begun to use the elevator on tougher days.</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>There are positives and negatives. Like I mentioned before, I do feel I have much positive to focus on despite the negative that has and is happening. I have been able to find and explore new passions as well as embrace my students and teaching job in a new way. Many of my students are very picky with food, as this is common with <a target="_blank" href="https://www.autismspeaks.org/family-services/health-and-wellness/nutrition/seven-ways-help-picky-eater-autism">Autism</a>. When children are picky to a point that they will not eat things due to texture or sensory reasons they can develop deficiencies etc. just like any other person can. I've been using my "<a target="_blank" href="https://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome#1">leaky gut</a>" and change of lifestyle as a teachable moment for my kids. We do a nutrition unit a couple times a week using the MyPlate model. I've watched two of them start to try school lunch after eating the same exact lunch day in and day out since the day they started school at 3 (they are now 8!). I stood in the cafeteria taking pictures of them in line like a proud mom!</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>I think it has in the fact that I have not seen people as often in person. But I am still navigating the social life while sick piece so I try not to come to any hasty conclusions before I rule out any of my faults first.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>Oh boy......honestly I will have to think about this one leading up to when we speak later :)</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>I think the biggest piece that made/makes healthcare professionals treat me differently is my mental health past. <strong>There are so many symptoms that are due to chronic illness (not mental) that were written off as part of my anxiety, previous eating disorder, depression etc.</strong> To me, my history with these things should make my opinion even more valid that the symptoms are not part of it. I can tell the difference between the two now and wish that knowledge could be used to my benefit versus a write-off.</p><p><strong>What is your best coping mechanism?</strong> *</p><p>My best coping mechanism lately is photography. It helps me accomplish a form of meditation- getting me out of my own head and into the moment.</p><p><strong>What are you the most fearful of and hopeful for in the future?</strong> *</p><p>I guess I'm most fearful that things will never calm down. It's hard to watch all of your friends getting engaged and married, starting families, buying homes, etc. while I'm trying to figure out if there's a way I can get insurance to cover <a target="_blank" href="https://www.zyrtec.com/products/zyrtec-d">Zyrtec D </a>so that I'm not spending $30+ a month on just one of my medications. So much of my money and time goes into my health I just hope that I find an equilibrium soon so that I can even just begin to think about planning, saving, etc.</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck :) My weakness as a teacher is also when students swear. When kids swear I can't help but laugh!</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p><strong>I would love to mention my friend's studio <a target="_blank" href="https://garagegirlfitness.info/">Garage Girl Fitness</a> if possible as it has been a huge resource and support system for me :)</strong></p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>I guess the hardest and best lesson I have learned is how strong I actually used to be. I truly had no idea of the strength my body had until it began to somewhat crash.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a6515c424a69487b653672b/1516574368681/Searching+for+a+diagnosis+chronic+illness+podacst.mp3" length="88882073" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a6515c424a69487b653672b/1516574368681/Searching+for+a+diagnosis+chronic+illness+podacst.mp3" length="88882073" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">What Happens When All Your Tests Show That You Are the Healthiest Sick Person A Chronic Illness Podcast</media:title></media:content></item><item><title>Running A Business While Having Chronic Illness Some Tips Some Pitfalls and Some Hope {A Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 15 Jan 2018 14:20:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/1/8/running-a-business-while-having-chronic-illness-some-tips-some-pitfalls-and-some-hope-a-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a4e89eee2c4835f86bc6848</guid><description>Click Title To Listen To Two women in business while also dealing with | |
| chronic illness have a VERY honest discussion about pitfalls, planning, and | |
| vision in business while being a spoonie.</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>Sucess is not final: failure is not fatal it is the courage to continue that counts<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Winston Churchill</figcaption> | |
| </figure><figure> | |
| <blockquote> | |
| <span>“</span>I’m scared of how much my body will limit my vision for this.<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Monica Michelle</figcaption> | |
| </figure> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a4e8a59e2c4835f86bc8199/5a4e8a5a9140b7211879f0d4/1515102510183/running-a-+business-while-having-chronic-illness-invisible-illness-podcast.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie." data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a4e8a59e2c4835f86bc8199/5a4e8a5a9140b7211879f0d4/1515102510183/running-a-+business-while-having-chronic-illness-invisible-illness-podcast.JPG?format=1000w" /><br> | |
| <h2 class="text-align-center">Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.</h2><p>Invisible Not Broken began because I have seen what happens when everyone is too frightened to show their vulnerabilities. It leads to misunderstandings and a serious lack of empathy. I always knew this project would be hard and desperately uncomfortable. You only have to listen to our <a href="http://invisiblenotbroken.com/home?tag=chronic%20fatigue">Gaslighting episode</a> to hear our theory about being the wounded gazelle (nope lions move along I am doing just FINE). This episode was very much pink underbelly vulnerability time for both Eva and I. We both had never really talked openly before of all of the challenges of running a business while being chronically ill with <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia </a>for Eva who runs <a target="_blank" href="https://wellacopia.com/">Wellacopia</a> and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">EDS</a> and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia</a> for Monica.</p><h2 class="text-align-center">Show Notes </h2><ul><li>Up and downsides when you are a spoonie and are your own boss.</li><li>How to define success? Purpose? Busy? Likes? Subscribers?</li><li>Why Monica Michelle had to shut down a successful <a target="_blank" href="https://vimeo.com/77299848">photography business</a> (hint <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a>) and the turning point when Monica decided to come out of the spoon ie closet.</li><li>Eva's inspiration for her tech startup <a target="_blank" href="https://wellacopia.com/">Wellacopia</a> which matches chronic illness patients with doctors.</li><li>The importance of supportive people in your life. Goal setting and planning for your business while figuring in your chronic illness.</li><li>Some tips and frustrations for finding balance</li><li>The Secret Spoonie Society</li><li>Find out how and why Invisible Not Broken began.</li><li>How to plan for brain-body breakdowns as a spoonie business owner</li><li>The painkiller effect of being "on"</li><li>Work life and sickness balance, cue the hilarity</li><li>The myth of superwoman</li><li>Stop the 'killing it' mentality</li><li>Frustrations with a vision that goes beyond physical ability. (Hey interns would be great)</li><li>Rock bottom what it looks like and the upside of everything going to hell.</li><li>Life Hacks to surviving and setting goals </li><li>"What you do is not who you are or your value."</li><li>The questions to ask to find out your core. (Try <a target="_blank" href="http://www.imdb.com/title/tt0137523/">Fight Club</a> the movie NOT the book) Guess what? Monica's core is being a storyteller.</li><li>"Anything can be taken away except your imagination."</li></ul><p class="text-align-center"><strong>Spoonie Book Club Reading</strong></p><p class="text-align-center">make your suggestions in the comments</p><p><a target="_blank" href="https://www.amazon.com/Diving-Bell-Butterfly-Memoir-Death/dp/0375701214/ref=sr_1_1?ie=UTF8&qid=1515101814&sr=8-1&keywords=diving+bell+and+the+butterfly+book">Diving Bell and the Butterfly</a></p><p><a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a></p><p><a target="_blank" href="https://www.goodreads.com/book/show/25899336-when-breath-becomes-air">When Breath Becomes Air</a></p><p>Fight Club</p><p><a target="_blank" href="https://www.goodreads.com/book/show/52036.Siddhartha">Siddartha</a></p><h2 class="text-align-center">Shameless Plug Time For Kyros and For My Book</h2> | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/51gOfejNHIL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new" class="product-title title">Snuggle Bunny: A Bedtime Story</a> | |
| By Monica Michelle | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new" class="buy-button"><input type="button" class="sqs-amazon-button sqs-system-button sqs-editable-button" value="Buy on Amazon"/></a> | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book/dp/0996266518?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0996266518" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/513ffXo1BpL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book/dp/0996266518?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0996266518" target="new" class="product-title title">Dreaming of Xeres: The Third War Book 1 (Volume 1)</a> | |
| By Kyros Amphiptere, Orion T. Hunter | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book/dp/0996266518?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=0996266518" target="new" class="buy-button"><input type="button" class="sqs-amazon-button sqs-system-button sqs-editable-button" value="Buy on Amazon"/></a>]]></content:encoded><itunes:author>Invisible Not Broken & Wellacopia</itunes:author><itunes:subtitle>Tips, Pitfalls, Hope, and Pink Underbelly Truth of running a business when you have a chronic illness</itunes:subtitle><itunes:summary>Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie. | |
| Invisible Not Broken began because I have seen what happens when everyone is too frightened to show their vulnerabilities. It leads to misunderstandings and a serious lack of empathy. I always knew this project would be hard and desperately uncomfortable. You only have to listen to our Gaslighting episode to hear our theory about being the wounded gazelle (nope lions move along I am doing just FINE). This episode was very much pink underbelly vulnerability time for both Eva and I. We both had never really talked openly before of all of the challenges of running a business while being chronically ill with fibromyalgia for Eva who runs Wellacopia and EDS and fibromyalgia for Monica.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>58:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a4e89eee2c4835f86bc6848/1515787793555/1500w/running-a-+business-while-having-chronic-illness-invisible-illness-podcast.JPG"/><itunes:title>Running A Business While Having Chronic Illness</itunes:title><content:encoded><![CDATA[<h2>Show Notes </h2><p>Up and downsides when you are a spoonie and are your own boss.</p><p>How to define success? Purpose? Busy? Likes? Subscribers?</p><p>Why Monica Michelle had to shut down a successful <a target="_blank" href="https://vimeo.com/77299848">photography business</a> (hint <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a>) and the turning point when Monica decided to come out of the spoon ie closet.</p><p>Eva's inspiration for her tech startup <a target="_blank" href="https://wellacopia.com/">Wellacopia</a> which matches chronic illness patients with doctors.</p><p>The importance of supportive people in your life. Goal setting and planning for your business while figuring in your chronic illness.</p><p>Some tips and frustrations for finding balance</p><p>The Secret Spoonie Society</p><p>Find out how and why Invisible Not Broken began.</p><p>How to plan for brain-body breakdowns as a spoonie business owner</p><p>The painkiller effect of being "on"</p><p>Work life and sickness balance, cue the hilarity</p><p>The myth of superwoman</p><p>Stop the 'killing it' mentality</p><p>Frustrations with a vision that goes beyond physical ability. (Hey interns would be great)</p><p>Rock bottom what it looks like and the upside of everything going to hell.</p><p>Life Hacks to surviving and setting goals </p><p>"What you do is not who you are or your value."</p><p>The questions to ask to find out your core. (Try <a target="_blank" href="http://www.imdb.com/title/tt0137523/">Fight Club</a> the movie NOT the book) Guess what? Monica's core is being a storyteller.</p><p>"Anything can be taken away except your imagination."</p><p><strong>Spoonie Book Club Reading</strong></p><p>make your suggestions in the comments</p><p><a target="_blank" href="https://www.amazon.com/Diving-Bell-Butterfly-Memoir-Death/dp/0375701214/ref=sr_1_1?ie=UTF8&qid=1515101814&sr=8-1&keywords=diving+bell+and+the+butterfly+book">Diving Bell and the Butterfly</a></p><p><a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a></p><p><a target="_blank" href="https://www.goodreads.com/book/show/25899336-when-breath-becomes-air">When Breath Becomes Air</a></p><p>Fight Club</p><p><a target="_blank" href="https://www.goodreads.com/book/show/52036.Siddhartha">Siddartha</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a59016ce4966b4d026b6917/1515782687297/Running+A+Business+While+Having+Chronic+Illness.mp3" length="82854683" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a59016ce4966b4d026b6917/1515782687297/Running+A+Business+While+Having+Chronic+Illness.mp3" length="82854683" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Running A Business While Having Chronic Illness</media:title></media:content></item><item><title>Get This Woman A Cape: Dealing With NF: Chronic Illness and Parenting Children with Chronic Illness: And Some Kick Ass Snowboarding and Other Self Care Tips {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 01 Jan 2018 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2018/1/1/dealing-with-nf-chronic-illness-neurofibromatosis-parenting-spoonie-children-with-aspbergers-self-care-invisible-illness-podcast-nesting-divorce</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a46c8e90d92977993d0e3ce</guid><description>Click Title To Listen to Chronic Illness Podcast About Neurofibromatosis</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf2241920273ab4853b2/1514591720486/divorce-parenting-caregiving-spoonielife-chronic-illness-podcast-neurofibromatosis.jpg" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Nesting Divorce, Parenting Children with Chronic Illness While Being Sick: A Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf2241920273ab4853b2/1514591720486/divorce-parenting-caregiving-spoonielife-chronic-illness-podcast-neurofibromatosis.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf25c83025f8444e3885/1514591825763/Living-and-snowboarding-with-NF-chronic-illness-blog-neurofibromatosis.jpg" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Living With NF: Invisible Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf25c83025f8444e3885/1514591825763/Living-and-snowboarding-with-NF-chronic-illness-blog-neurofibromatosis.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf2bc83025f8444e396e/1514591860740/being-a-spoonie-mom-with-chronically-ill-children-chronic-illness-podcast.jpg" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Spoonie Mom Caring for Chronically Ill Children" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a46cf22e4966b19e3ca74cf/5a46cf2bc83025f8444e396e/1514591860740/being-a-spoonie-mom-with-chronically-ill-children-chronic-illness-podcast.jpg?format=1000w" /><br> | |
| <p class="text-align-center"><strong>Please download images to share the podcast on social media.</strong></p><hr /><h1 class="text-align-center">Show Notes</h1><hr /><h1>Welcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490">neurofibromatosis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/bipolar-disorder/symptoms-causes/syc-20355955">bipolar</a> and partial blindness.<br /> </h1><h2>Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.</h2><p>Her daughter is on the <a target="_blank" href="https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml">autism spectrum</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/attention-deficit-hyperactivity-disorder-adhd/index.shtml">ADHD</a>, and childhood <a target="_blank" href="https://adaa.org/living-with-anxiety/children/anxiety-and-depression">Clinical Depression</a>. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.</p><p>Her son has <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490">NF</a> needing constant wheelchair and <a target="_blank" href="http://kidshealth.org/en/parents/g-tube.html">g tube</a>. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.</p><p>How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to <a target="_blank" href="http://www.imdb.com/title/tt2372162/">Orange is The New Black</a> . </p><p>We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went <a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a> and <a target="_blank" href="https://www.amazon.com/Neverwhere-Illustrated-Neil-Gaiman/dp/0062821334/ref=sr_1_1?s=books&ie=UTF8&qid=1514590655&sr=1-1&keywords=neverwhere+neil+gaiman">Neil Gaiman's Neverwhere</a> but Elana is using <a target="_blank" href="http://www.imdb.com/title/tt4574334/">Stranger Things</a>. We are geeks We are fine with it.</p><p class="text-align-center"><a target="_blank" href="https://www.equitablemediation.com/blog/nesting-plans-bird-nest-parenting">NestingDivorce Style</a> </p><p class="text-align-center"><a target="_blank" href="http://www.courts.ca.gov/1038.htm">Spousal Support</a></p><p class="text-align-center"><a target="_blank" href="http://www.msnbc.com/msnbc-quick-cuts/watch/michelle-obama-when-they-go-low-we-go-high-732072515525">Michelle Obama Go High</a></p> | |
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| <h1 class="text-align-center">Questions & Answers</h1><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="http://www.chop.edu/conditions-diseases/neurofibromatosis-type-1">NF1</a>, Mood Disorder, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534">Essential Tremor (Me)</a>. <a target="_blank" href="https://www.nimh.nih.gov/health/publications/autism-spectrum-disorder/index.shtml">ASD</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/mood-disorders/symptoms-causes/syc-20365057">Mood Disorder (DD)</a>, <a target="_blank" href="https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy">Epilepsy</a>, Epilepsy, <a target="_blank" href="http://www.cpsn.org.au/pages/what-is-cp.html">CP</a>, <a target="_blank" href="https://en.wikipedia.org/wiki/Cortical_visual_impairment">CVI,</a> <a target="_blank" href="https://capd.nal.gov.au/capd-what-is-capd.shtml">CAPD</a>,<a target="_blank" href="http://medicallyfragilechild.com/medically-fragile-child-definition/"> Medically Fragile</a>,<a target="_blank" href="http://kidshealth.org/en/parents/g-tube.html"> G Tube (DS)</a></p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>2</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A regular mom before they were sick/special needs</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>I have absolutely no idea. Unfathomable.</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")</p><p><strong>Do you have any life hacks?</strong> *</p><p>Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? </strong>*</p><p>Me less so because I'm very proud so I don't share much. My daughter, all the time.</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong> *</p><p>I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.</p><p><strong>What is your best coping mechanism?</strong> *</p><p>My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.</p><p><strong>What are you the most fearful of and hopeful for in the future?</strong> *</p><p>I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck or Douchebag</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p><a target="_blank" href="http//:www.netflix.com">Netflix</a></p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Bipolar, GTubes, NF, Aspergers, Self Care, Snowboarding, and Nesting Divorce</itunes:subtitle><itunes:summary>Welcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition neurofibromatosis, bipolar and partial blindness. | |
| Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family. | |
| Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression. | |
| Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard. | |
| How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black . | |
| We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>1:00:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a46c8e90d92977993d0e3ce/1514927256670/1500w/divorce-parenting-caregiving-spoonielife-chronic-illness-podcast-neurofibromatosis.jpg"/><itunes:title>Get This Woman A Cape: Neurofibromatosis: Parenting With Chronic Illness</itunes:title><content:encoded><![CDATA[<h1>Questions & Answers</h1><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="http://www.chop.edu/conditions-diseases/neurofibromatosis-type-1">NF1</a>, Mood Disorder, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534">Essential Tremor (Me)</a>. <a target="_blank" href="https://www.nimh.nih.gov/health/publications/autism-spectrum-disorder/index.shtml">ASD</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/mood-disorders/symptoms-causes/syc-20365057">Mood Disorder (DD)</a>, <a target="_blank" href="https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy">Epilepsy</a>, Epilepsy, <a target="_blank" href="http://www.cpsn.org.au/pages/what-is-cp.html">CP</a>, <a target="_blank" href="https://en.wikipedia.org/wiki/Cortical_visual_impairment">CVI,</a> <a target="_blank" href="https://capd.nal.gov.au/capd-what-is-capd.shtml">CAPD</a>,<a target="_blank" href="http://medicallyfragilechild.com/medically-fragile-child-definition/"> Medically Fragile</a>,<a target="_blank" href="http://kidshealth.org/en/parents/g-tube.html"> G Tube (DS)</a></p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>2</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>A regular mom before they were sick/special needs</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>I have absolutely no idea. Unfathomable.</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")</p><p><strong>Do you have any life hacks?</strong> *</p><p>Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? </strong>*</p><p>Me less so because I'm very proud so I don't share much. My daughter, all the time.</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong> *</p><p>I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.</p><p><strong>What is your best coping mechanism?</strong> *</p><p>My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.</p><p><strong>What are you the most fearful of and hopeful for in the future?</strong> *</p><p>I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!</p><p><strong>What is your favorite swear word?</strong></p><p>Fuck or Douchebag</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.</p><p><strong>What is the best purchase under $100 that helped your life</strong></p><p><a target="_blank" href="http//:www.netflix.com">Netflix</a></p><h1>Welcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490">neurofibromatosis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/bipolar-disorder/symptoms-causes/syc-20355955">bipolar</a> and partial blindness.<br /> </h1><h2>Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.</h2><p>Her daughter is on the <a target="_blank" href="https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml">autism spectrum</a>, <a target="_blank" href="https://www.nimh.nih.gov/health/topics/attention-deficit-hyperactivity-disorder-adhd/index.shtml">ADHD</a>, and childhood <a target="_blank" href="https://adaa.org/living-with-anxiety/children/anxiety-and-depression">Clinical Depression</a>. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.</p><p>Her son has <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490">NF</a> needing constant wheelchair and <a target="_blank" href="http://kidshealth.org/en/parents/g-tube.html">g tube</a>. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.</p><p>How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to <a target="_blank" href="http://www.imdb.com/title/tt2372162/">Orange is The New Black</a> . </p><p>We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went <a target="_blank" href="http://www.doctorwho.tv/">Dr. Who</a> and <a target="_blank" href="https://www.amazon.com/Neverwhere-Illustrated-Neil-Gaiman/dp/0062821334/ref=sr_1_1?s=books&ie=UTF8&qid=1514590655&sr=1-1&keywords=neverwhere+neil+gaiman">Neil Gaiman's Neverwhere</a> but Elana is using <a target="_blank" href="http://www.imdb.com/title/tt4574334/">Stranger Things</a>. We are geeks We are fine with it.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a46c94f24a694278eb69923/1514588665643/Elana.mp3" length="81499242" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a46c94f24a694278eb69923/1514588665643/Elana.mp3" length="81499242" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Get This Woman A Cape: Neurofibromatosis: Parenting With Chronic Illness</media:title></media:content></item><item><title>Holidays & Parties Spoonie Survival Guide {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Sun, 24 Dec 2017 16:00:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/12/25/holidays-parties-spoonie-survival-guide-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a3eb549e2c4836cd1b19b99</guid><description>Click Title To Read Holidays with Chronic Illness | |
| This is super general and done just from my perspective. Take what works | |
| for you drop what doesn't and tweet your own tips to @invisiblenotbrk and | |
| help another spoonie out!</description><content:encoded><![CDATA[<p> </p><h1><br />Holidays with chronic illness</h1><p>This is super general and done just from my perspective. Take what works for you drop what doesn't and tweet your own tips to <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a> and help another spoonie out! Remember we are not medical professionals, if we were with our vocabulary we would be fired.</p><h2>Now that I think I have legally covered our asses I'm going to start with what to do if you are spending the holidays alone.</h2><p><strong>Self-care </strong>is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging <a target="_blank" href="https://www.youtube.com/watch?v=K1b8AhIsSYQ">Jefferson Airplane </a><em><a target="_blank" href="https://www.youtube.com/watch?v=K1b8AhIsSYQ">We Built this City</a> </em>is on mine. ok judge, if it makes you feel better.</p><p><a target="_blank" href="https://www.amazon.com/Doctor-Who-Exploding-Tardis-Jigsaw/dp/B006CPEO6I/ref=sr_1_1?ie=UTF8&qid=1514059659&sr=8-1&keywords=dr+who+puzzle">Jigsaw Puzzle</a> (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? <a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F"><strong>"You know that in 900 years </strong></a><strong><a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F">in</a></strong><a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F"><strong> time and space I've never met anyone who wasn't important before."</strong></a> Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.</p><p> <strong>Walks or just sunlight.</strong> If stuck in bed pick the part of you that can move and do. </p><iframe scrolling="no" allowfullscreen="" src="//www.youtube.com/embed/ikAb-NYkseI?wmode=opaque&enablejsapi=1" width="640" frameborder="0" height="480"> | |
| </iframe><p><strong>Make something</strong> art, music, the worst poetry in existence. Just make something. This <a target="_blank" href="http://www.neilgaiman.com/">Neil Gaiman </a>speech is well worth your 20 minutes.<br /><br /><br /><strong>If you are a Holiday sort of person</strong> decorate your nightstands or make a warm cinnamon drink.</p><p><strong>Take a class</strong></p><p class="text-align-center"><a target="_blank" href="https://www.duolingo.com/">Duolingo</a></p><p class="text-align-center"><a target="_blank" href="https://www.skillshare.com/">Skillshare </a></p><p class="text-align-center">YouTube</p><p class="text-align-center"><a target="_blank" href="https://www.craftsy.com/?regMessageId=31&cr_linkid=SEM_G_Brand_8631586297&cr_maid=96171&kclid=7d518660-1ac4-49ac-acb0-2c25c744a691&gclid=CjwKCAiAmvjRBRBlEiwAWFc1mMkCb5pYgKX5AW7ttsU9SUnYkxmFdrvW9FFp2vFrKEeh2YuiHxDAghoCBjEQAvD_BwE">Craftsy </a></p><p class="text-align-center"><a target="_blank" href="https://www.creativelive.com/?utm_source=google&utm_medium=cpc&utm_campaign=S__BRAND&utm_content=B__EXACT&gclid=CjwKCAiAmvjRBRBlEiwAWFc1mJOKZxq74LRBgukTcJk3Q6mR1xOg399XcNHnVFvfc2cb5hXQvTTDqBoCb7gQAvD_BwE">CreativeLive</a></p><h2 class="text-align-center">If you are really in serious emotional trouble please call the helpline</h2><h2 class="text-align-center">Call 1-800-273-8255</h2><h2 class="text-align-center">Available 24 hours every day</h2><h2> </h2><h2>If you are not alone (like NEVER alone) Planning ahead. </h2><p>Pack meds.</p><p>Call ahead and make sure there is a quiet space just for you</p><p>Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.</p><p>Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help</p><p><br />The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses. </p><p>I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have<em> blank</em> I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.</p><p>Remember You know your body and your mind take care of them in a way that suits you best, I'm closing with the advice of one of our listeners. </p><h3 class="text-align-center">Remembering it’s okay to not feel okay. You can’t control when flare ups happen, and it’s not your fault!! It’s okay to need to take naps or not eat dinner because you can’t. It’s okay to wake up late, it’s okay to not have energy!!</h3><p dir="ltr" class="text-align-center">— <a target="_blank" href="https://twitter.com/mfcmattyh">C{Andy} cane</a> 🍭</p><p><br />So that's it. If you 'have more tips I will leave the comets open or tweet <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a>. Share this with family and friends Give the gift of kind comments on<a target="_blank" href="https://itunes.apple.com/us/podcast/invisible-not-broken/id1272292605?mt=2"> Itunes</a> and until next week</p><h1 class="text-align-center">Be kind. Be Gentle. Be a fucking bad ass.</h1> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a3ebe3e0d9297d1688f68ee/5a3ebe3f9140b75e19662b08/1514061576023/chronic-illness-survival-guide-holiday-edition.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Chronic Illness Holiday Survival Guide" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a3ebe3e0d9297d1688f68ee/5a3ebe3f9140b75e19662b08/1514061576023/chronic-illness-survival-guide-holiday-edition.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a3ebe3e0d9297d1688f68ee/5a3ebe4153450ae78e96d18b/1514061591814/spoonie-holiday-survival-guide.JPG" data-image-dimensions="1365x2048" data-image-focal-point="0.5,0.5" alt="Spoonie Party Survival Guide" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a3ebe3e0d9297d1688f68ee/5a3ebe4153450ae78e96d18b/1514061591814/spoonie-holiday-survival-guide.JPG?format=1000w" /><br>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Chronic Illness Podcast Holiday Survival Edition</itunes:subtitle><itunes:summary> | |
| Holidays with chronic illness | |
| This is super general and done just from my perspective. Take what works for you drop what doesn't and tweet your own tips to @invisiblenotbrk and help another spoonie out! Remember we are not medical professionals, if we were with our vocabulary we would be fired.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>10:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a3eb549e2c4836cd1b19b99/1514131206213/1500w/spoonie-holiday-survival-guide.JPG"/><itunes:title>Holidays & Parties Spoonie Survival Guide {Chronic Illness Podcast}</itunes:title><content:encoded><![CDATA[<h1><br />Holidays with chronic illness</h1><p>This is super general and done just from my perspective. Take what works for you drop what doesn't and tweet your own tips to <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a> and help another spoonie out! Remember we are not medical professionals, if we were with our vocabulary we would be fired.</p><h2>Now that I think I have legally covered our asses I'm going to start with what to do if you are spending the holidays alone.</h2><p><strong>Self-care </strong>is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging <a target="_blank" href="https://www.youtube.com/watch?v=K1b8AhIsSYQ">Jefferson Airplane </a><em><a target="_blank" href="https://www.youtube.com/watch?v=K1b8AhIsSYQ">We Built this City</a> </em>is on mine. ok judge, if it makes you feel better.</p><p><a target="_blank" href="https://www.amazon.com/Doctor-Who-Exploding-Tardis-Jigsaw/dp/B006CPEO6I/ref=sr_1_1?ie=UTF8&qid=1514059659&sr=8-1&keywords=dr+who+puzzle">Jigsaw Puzzle</a> (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? <a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F"><strong>"You know that in 900 years </strong></a><strong><a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F">in</a></strong><a target="_blank" href="https://www.theodysseyonline.com/12-favorite-doctor-who-quotes?altdesign=socialux&utm_expid=.oW2L-b3SQF-m5a-dPEU77g.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F"><strong> time and space I've never met anyone who wasn't important before."</strong></a> Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.</p><p> <strong>Walks or just sunlight.</strong> If stuck in bed pick the part of you that can move and do. </p><p><strong>Make something</strong> art, music, the worst poetry in existence. Just make something. This <a target="_blank" href="http://www.neilgaiman.com/">Neil Gaiman </a>speech is well worth your 20 minutes.<br /><br /><br /><strong>If you are a Holiday sort of person</strong> decorate your nightstands or make a warm cinnamon drink.</p><p><strong>Take a class</strong></p><p><a target="_blank" href="https://www.duolingo.com/">Duolingo</a></p><p><a target="_blank" href="https://www.skillshare.com/">Skillshare </a></p><p>YouTube</p><p><a target="_blank" href="https://www.craftsy.com/?regMessageId=31&cr_linkid=SEM_G_Brand_8631586297&cr_maid=96171&kclid=7d518660-1ac4-49ac-acb0-2c25c744a691&gclid=CjwKCAiAmvjRBRBlEiwAWFc1mMkCb5pYgKX5AW7ttsU9SUnYkxmFdrvW9FFp2vFrKEeh2YuiHxDAghoCBjEQAvD_BwE">Craftsy </a></p><p><a target="_blank" href="https://www.creativelive.com/?utm_source=google&utm_medium=cpc&utm_campaign=S__BRAND&utm_content=B__EXACT&gclid=CjwKCAiAmvjRBRBlEiwAWFc1mJOKZxq74LRBgukTcJk3Q6mR1xOg399XcNHnVFvfc2cb5hXQvTTDqBoCb7gQAvD_BwE">CreativeLive</a></p><h2>If you are really in serious emotional trouble please call the helpline</h2><h2>Call 1-800-273-8255</h2><h2>Available 24 hours every day</h2><h2> </h2><h2>If you are not alone (like NEVER alone) Planning ahead. </h2><p>Pack meds.</p><p>Call ahead and make sure there is a quiet space just for you</p><p>Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.</p><p>Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help</p><p><br />The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses. </p><p>I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have<em> blank</em> I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.</p><p>Remember You know your body and your mind take care of them in a way that suits you best, I'm closing with the advice of one of our listeners. </p><h3>Remembering it’s okay to not feel okay. You can’t control when flare ups happen, and it’s not your fault!! It’s okay to need to take naps or not eat dinner because you can’t. It’s okay to wake up late, it’s okay to not have energy!!</h3><p>— <a target="_blank" href="https://twitter.com/mfcmattyh">C{Andy} cane</a> 🍭</p><p><br />So that's it. If you 'have more tips I will leave the comets open or tweet <a target="_blank" href="https://twitter.com/Invisiblenotbrk">@invisiblenotbrk</a>. Share this with family and friends Give the gift of kind comments on<a target="_blank" href="https://itunes.apple.com/us/podcast/invisible-not-broken/id1272292605?mt=2"> Itunes</a> and until next week</p><h1>Be kind. Be Gentle. Be a fucking bad ass.</h1>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a3eb5eae4966b794fce0797/1514059263622/Holiday-Party-Spoonie-Survival-Guide+%7BChronic+Illness+Podcast%7D.m4a" length="4644746" type="audio/x-m4a"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a3eb5eae4966b794fce0797/1514059263622/Holiday-Party-Spoonie-Survival-Guide+%7BChronic+Illness+Podcast%7D.m4a" length="4644746" type="audio/x-m4a" isDefault="true" medium="audio"><media:title type="plain">Holidays & Parties Spoonie Survival Guide {Chronic Illness Podcast}</media:title></media:content></item><item><title>Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 18 Dec 2017 14:15:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/12/17/darwin-has-some-explaining-to-do-endometriosis-and-hysterectomy-a-chronic-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a36fa96ec212d30322f0adc</guid><description>To Listen To Our Podcast On Endotramitriosis and Chronic Illness Blog Post | |
| Click the Title</description><content:encoded><![CDATA[<p> </p><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.endofound.org/endometriosis">Endometriosis</a></p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>22</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I had so much more energy</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I think I would have been more engaged in the world around me</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>No pain!</p><p><strong>Do you have any life hacks? </strong>*</p><p>I had some hacks for dealing with pain like meds and stretches and resting in a dark room</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? </strong>*</p><p>No, because I didn’t really tell people about it, so no one knew</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>Positive now that it’s resolved. Very negative before</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>It stresses things occasionally when I am feeling pain and low energy so often at home</p><p><strong>Is there anything you are afraid to tell even the people closest to you? </strong>*</p><p>Nope!</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong> *</p><p>Yes. I had to push HARD for a <a target="_blank" href="https://www.endocenter.org/do-you-have-endo/?gclid=Cj0KCQiAyNjRBRCpARIsAPDBnn0Ul2kB0OpbCpx7VkB4L5BkVzgLs4oTpzpaFhDDc2y62mT2gCZeZjoaAuE7EALw_wcB">hysterectomy</a> with multiple doctors.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Reading, coloring, spending time alone</p><p><strong>What are you the most fearful of and hopeful for in the future? </strong>*</p><p>No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish</p><p><strong>What is your favorite swear word?</strong></p><p>Fuckers (applicable in 2017 in particular)</p><p><strong>Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview?</strong> *</p><p>Nope! Everything is fair game:)</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.</p> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a36fef69140b76437f9f3a3/5a36fef671c10b467b348180/1513553807907/a-podcast-about+women-periods-and-endometriosis.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Endometriosis, Hysterectomy, and Spoonie" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a36fef69140b76437f9f3a3/5a36fef671c10b467b348180/1513553807907/a-podcast-about+women-periods-and-endometriosis.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a36fef69140b76437f9f3a3/5a36fef6e4966b79a0c91369/1513553825056/endotramitriosis-chronic-illness-podcast.JPG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Endometriosis Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a36fef69140b76437f9f3a3/5a36fef6e4966b79a0c91369/1513553825056/endotramitriosis-chronic-illness-podcast.JPG?format=1000w" /><br>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast: Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast}</itunes:subtitle><itunes:summary>A Chronic Illness Podcast About Endometriosis | |
| What is your disorder? * | |
| Endometriosis | |
| At what age did your disorder become a daily issue? * | |
| 22 | |
| Who were you before your illness became debilitating? * | |
| I had so much more energy | |
| What would you do if you were not dealing with your invisible illness? * | |
| I think I would have been more engaged in the world around me | |
| What would you like people to know about your daily life? * | |
| Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy | |
| What would make living and moving in the world easier for you? * | |
| No pain! | |
| Do you have any life hacks? * | |
| I had some hacks for dealing with pain like meds and stretches and resting in a dark room | |
| What kind of support do you get from family or friends? * | |
| People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues | |
| Have you ever had someone not believe you have an invisible illness because of your appearance? * | |
| No, because I didn’t really tell people about it, so no one knew | |
| Has this been a positive or negative experience? * | |
| Positive now that it’s resolved. Very negative before | |
| How has your invisible illness affected your relationships? * | |
| It stresses things occasionally when I am feeling pain and low energy so often at home | |
| Is there anything you are afraid to tell even the people closest to you? * | |
| Nope! | |
| Does the fact that your disease is invisible change how healthcare professionals treat you? * | |
| Yes. I had to push HARD for a hysterectomy with multiple doctors. | |
| What is your best coping mechanism? * | |
| Reading, coloring, spending time alone | |
| What are you the most fearful of and hopeful for in the future? * | |
| No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish | |
| What is your favorite swear word? | |
| Fuckers (applicable in 2017 in particular) | |
| Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? * | |
| Nope! Everything is fair game:) | |
| What is the hardest and/or best lesson your condition has taught you? | |
| To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a36fa96ec212d30322f0adc/1513606536398/1500w/endotramitriosis-chronic-illness-podcast.JPG"/><itunes:title>Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast}</itunes:title><content:encoded><![CDATA[<p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.endofound.org/endometriosis">Endometriosis</a></p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>22</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I had so much more energy</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>I think I would have been more engaged in the world around me</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy</p><p><strong>What would make living and moving in the world easier for you? </strong>*</p><p>No pain!</p><p><strong>Do you have any life hacks? </strong>*</p><p>I had some hacks for dealing with pain like meds and stretches and resting in a dark room</p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? </strong>*</p><p>No, because I didn’t really tell people about it, so no one knew</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>Positive now that it’s resolved. Very negative before</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>It stresses things occasionally when I am feeling pain and low energy so often at home</p><p><strong>Is there anything you are afraid to tell even the people closest to you? </strong>*</p><p>Nope!</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong> *</p><p>Yes. I had to push HARD for a <a target="_blank" href="https://www.endocenter.org/do-you-have-endo/?gclid=Cj0KCQiAyNjRBRCpARIsAPDBnn0Ul2kB0OpbCpx7VkB4L5BkVzgLs4oTpzpaFhDDc2y62mT2gCZeZjoaAuE7EALw_wcB">hysterectomy</a> with multiple doctors.</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Reading, coloring, spending time alone</p><p><strong>What are you the most fearful of and hopeful for in the future? </strong>*</p><p>No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish</p><p><strong>What is your favorite swear word?</strong></p><p>Fuckers (applicable in 2017 in particular)</p><p><strong>Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview?</strong> *</p><p>Nope! Everything is fair game:)</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a36fc6a24a6949ae3ff46a6/1513553198010/endometriosis.mp3" length="85601302" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a36fc6a24a6949ae3ff46a6/1513553198010/endometriosis.mp3" length="85601302" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast}</media:title></media:content></item><item><title>Chronic Illness Misconceptions, Spoon Theory Explained, Handicap Parking Peanut Gallery, and How To Be Really Nice To The Spoonie In Your Life</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 11 Dec 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/12/10/chronic-illness-misconceptions-spoon-theory-explained-handicap-parking-peanut-gallery-and-how-to-be-really-nice-to-the-spoonie-in-your-life</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a2dbae48165f5d27431e52a</guid><description>Click Title Listen to Chronic Illness Podcast</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>It’s not just us missing society. We are also missing FROM society<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Monica Michelle Misconceptions of Chronic Illness</figcaption> | |
| </figure> | |
| <p> </p><h2>Lisen to our most shareable episode. Send our chronic illness episode to the person you wish understood chronic illness better.</h2><p> </p><p>Kyros' perfectly organized show notes that I systematiclly disorganized.</p><p>Misconceptions about Invisible Illnesses</p><p> </p><p>Start with an explanation of Spoon Theory! <a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/</a></p><p><strong>Things we’re tired of hearing all the time:</strong></p><p> </p><ol><li>You don’t look sick. / You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”<ol><li>That if you use a wheelchair, you have to use it all the time.</li><li>That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.</li><li>So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).</li><li>Just because a person has a disability does not mean they are <em>disabled. </em> Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.</li><li>Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”</li><li>In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker<ol><li><a href="https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/">https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/</a></li><li><a href="https://www.census.gov/sipp/">https://www.census.gov/sipp/</a></li></ol></li></ol></li><li>But you were fine yesterday.<ol><li>You just want attention</li><li>Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”</li></ol></li><li>If you were really in that much pain it would show.<ol><li>A lot of pressure to not show pain / anything but a positive emotion.</li></ol></li><li>You’re too young to be disabled.</li><li>It must be nice to get to stay home all day. / I wish I could stay home all day.<ol><li>smoking pot all day.</li><li>We’re lazy. A drain on society. Bad parents.</li><li>Just because we are home, we can’t contribute.</li><li>Many people don’t realize that when you are not working, there are repercussions. <ol><li>No social contact</li><li>Lonliness</li><li>The benefits of interacting with people disappear</li><li>Financial hardships</li><li>Social isolation</li><li>Negative stereotypes - Working is way easier that being disabled</li><li>Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.</li><li>I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.</li></ol></li><li>What do you do all day?</li><li>You must have so much free time.</li><li>Pressure to make the most of your free time.</li></ol></li><li>Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? <ol><li>Doesn’t your insurance cover all that?</li><li>Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.</li><li>The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.</li><li>That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.</li><li>We didn’t do anything to deserve this or you brought it on yourself</li><li>And this gets worse with age/being overweight because they blame everything on your age / weight</li></ol></li><li>You must feel so guilty about:<ol><li>Taking care of the kids</li><li>Taking care of the house</li><li>Not contributing</li><li>Not working / supporting yourself</li><li>Draining resources from the family</li><li>Being a burden</li><li>Not being able to play with the pet / walk pets.</li></ol></li><li>Just because I’m on opioids / marijuana does not mean I’m a drug addict.</li><li>People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.</li><li>10.You’re so inspiring. (Well done not dying!) and trying to live up to that.<ol><li>You should either be pollyanna or crying all the time.</li><li>Your partner must be a saint for sticking with you through this or marrying you anyway.</li><li>We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.</li><li>This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. </li><li>Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.</li></ol></li></ol><p> </p><p> </p><p> </p><p> </p><p><a href="https://undark.org/article/mystery-diseases-syndromes-health-care/">https://undark.org/article/mystery-diseases-syndromes-health-care/</a></p><p><a href="https://www.youtube.com/user/invisiblenomoretv">https://www.youtube.com/user/invisiblenomoretv</a></p> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7beec212d8655e42dbc/1512949940554/chronic-illness-podcast-spoonie-assumptions.JPG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Our Most Shareable Episode Misconceptions About Chronic Illness" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7beec212d8655e42dbc/1512949940554/chronic-illness-podcast-spoonie-assumptions.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7dc0d9297714f9e8a7d/1512949971308/handicap-parking-assumptions-chronic-illness-blog.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7dc0d9297714f9e8a7d/1512949971308/handicap-parking-assumptions-chronic-illness-blog.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7faf9619a5b7c8c79f8/1512949999279/Be-kind-to-spoonies-invisible-illness-podcast.JPG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="How To Be Really Nice To Your Spoonie" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc7faf9619a5b7c8c79f8/1512949999279/Be-kind-to-spoonies-invisible-illness-podcast.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc80ee4966be66fcdf694/1512950040927/chronic+illness+blog.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Assumptions Non Spoonies Make About Chronic Illness" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a2dc7bd0d9297714f9e84c7/5a2dc80ee4966be66fcdf694/1512950040927/chronic+illness+blog.JPG?format=1000w" /><br>]]></content:encoded><itunes:author>Invisible Not Broken Panel</itunes:author><itunes:subtitle>Chronic Illness Misconceptions, Spoon Theory Explained, Handicap Parking Peanut Gallery, and How To Be Really Nice To The Spoonie In Your Life</itunes:subtitle><itunes:summary>Chronic Illness Misconceptions, Spoon Theory Explained, Gender Roles and chronic illness, Political Rages (Monica), How To Be Really Nice To The Spoonie In Your Life, Oscar Level Pain Performance, The Dangers of Pain Scale, Why Chronic Illness is Not Like TV, Handicap Parking and The Peanut Gallery, Why Your Partner Is an Automatic Saint, and You Are An Inspiring Person, There Aren't Many Cures For Chronic Illness,My Medication Does Not Make Me An Addict (Thank you Opioid Epidemic)</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:04:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a2dbae48165f5d27431e52a/1513002633712/1500w/chronic-illness-podcast-spoonie-assumptions.JPG"/><itunes:title>Chronic Illness Podcast: Spoonie Misconceptions</itunes:title><content:encoded><![CDATA[<p>Misconceptions about Invisible Illnesses</p><p> </p><p>Start with an explanation of Spoon Theory! <a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/</a></p><p><strong>Things we’re tired of hearing all the time:</strong></p><p> </p><p>You don’t look sick. / You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”</p><p>That if you use a wheelchair, you have to use it all the time.</p><p>That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.</p><p>So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).</p><p>Just because a person has a disability does not mean they are <em>disabled. </em> Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.</p><p>Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”</p><p>In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker</p><p><a href="https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/">https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/</a></p><p><a href="https://www.census.gov/sipp/">https://www.census.gov/sipp/</a></p><p>But you were fine yesterday.</p><p>You just want attention</p><p>Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”</p><p>If you were really in that much pain it would show.</p><p>A lot of pressure to not show pain / anything but a positive emotion.</p><p>You’re too young to be disabled.</p><p>It must be nice to get to stay home all day. / I wish I could stay home all day.</p><p>smoking pot all day.</p><p>We’re lazy. A drain on society. Bad parents.</p><p>Just because we are home, we can’t contribute.</p><p>Many people don’t realize that when you are not working, there are repercussions. </p><p>No social contact</p><p>Lonliness</p><p>The benefits of interacting with people disappear</p><p>Financial hardships</p><p>Social isolation</p><p>Negative stereotypes - Working is way easier that being disabled</p><p>Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.</p><p>I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.</p><p>What do you do all day?</p><p>You must have so much free time.</p><p>Pressure to make the most of your free time.</p><p>Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? </p><p>Doesn’t your insurance cover all that?</p><p>Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.</p><p>The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.</p><p>That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.</p><p>We didn’t do anything to deserve this or you brought it on yourself</p><p>And this gets worse with age/being overweight because they blame everything on your age / weight</p><p>You must feel so guilty about:</p><p>Taking care of the kids</p><p>Taking care of the house</p><p>Not contributing</p><p>Not working / supporting yourself</p><p>Draining resources from the family</p><p>Being a burden</p><p>Not being able to play with the pet / walk pets.</p><p>Just because I’m on opioids / marijuana does not mean I’m a drug addict.</p><p>People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.</p><p>10.You’re so inspiring. (Well done not dying!) and trying to live up to that.</p><p>You should either be pollyanna or crying all the time.</p><p>Your partner must be a saint for sticking with you through this or marrying you anyway.</p><p>We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.</p><p>This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. </p><p>Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.</p><p> </p><p> </p><p> </p><p> </p><p><a href="https://undark.org/article/mystery-diseases-syndromes-health-care/">https://undark.org/article/mystery-diseases-syndromes-health-care/</a></p><p><a href="https://www.youtube.com/user/invisiblenomoretv">https://www.youtube.com/user/invisiblenomoretv</a></p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a2dbcc30d9297714f9cd76c/1512947121380/chronic-illness-misconceptions-how-to-be-nice-to-spoonies-chronic-illness-podcast.mp3" length="91557221" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a2dbcc30d9297714f9cd76c/1512947121380/chronic-illness-misconceptions-how-to-be-nice-to-spoonies-chronic-illness-podcast.mp3" length="91557221" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Chronic Illness Podcast: Spoonie Misconceptions</media:title></media:content></item><item><title>Crohn's Disease: College and Invisible Illness, Parenting with Invisible Illness, Joys and Pitfalls of Canadian Healthcare, and The Ultimate Toxic Friend Cleanse</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 04 Dec 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/chronic-illness-podcast-crohns-disease-parenting-chronic-illness-canadian-healthcare</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a2185f79140b7638e29589c</guid><description>Click title to listen to chronic illness podcast on Crohn's Disease</description><content:encoded><![CDATA[<h1>This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's Disease</a>.</h1><h2 dir="ltr">Learn about what a diagnosis like <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's</a> can be like in college, dating with a chronic illness, <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pubmed/18957400">the Canadian healthcare system</a>, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.</h2> | |
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| </form> | |
| <p class="text-align-center"><strong>What is your disorder? *</strong></p><p class="text-align-center"><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's Disease</a></p><p class="text-align-center"><strong>At what age did your disorder become a daily issue? *</strong></p><p class="text-align-center">21</p><p class="text-align-center"><strong>Who were you before your illness became debilitating? </strong>*</p><p class="text-align-center">Adventurous World Traveller</p><p class="text-align-center"><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p class="text-align-center">Spontaneous Travel</p><p class="text-align-center"><strong>What would you like people to know about your daily life?</strong> *</p><p class="text-align-center">I'm never quite sure when I wake up how the day will be. And I'm afraid of food.</p><p class="text-align-center"><strong>What would make living and moving in the world easier for you?</strong> *</p><p class="text-align-center">Ingredients lists on everything!</p><p class="text-align-center"><strong>Do you have any life hacks?</strong> *</p><p class="text-align-center">Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's about</p><p class="text-align-center"><strong>What kind of support do you get from family or friends? </strong>*</p><p class="text-align-center">My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.</p><p class="text-align-center"><strong>Have you ever had someone not believe you have an invisible illness because of your appearance?</strong> *</p><p class="text-align-center">Yes, in overt and subtle ways.</p><p class="text-align-center"><strong>Has this been a positive or negative experience? </strong>*</p><p class="text-align-center">Having to justify the hard choices my illness forces on me to some judgemental asshole sucks</p><p class="text-align-center"><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p class="text-align-center">The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or family</p><p class="text-align-center"><strong>How has your invisible illness affected your relationships? </strong>*</p><p class="text-align-center">I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were before</p><p class="text-align-center"><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p class="text-align-center">Not really</p><p class="text-align-center"><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p class="text-align-center">It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understood</p><p class="text-align-center"><strong>What is your best coping mechanism? </strong>*</p><p class="text-align-center">Laughter</p><p class="text-align-center"><strong>What are you the most fearful of and hopeful for in the future? *</strong></p><p class="text-align-center">Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in that</p><p class="text-align-center"><strong>What is your favorite swear word?</strong></p><p class="text-align-center">Scroat</p><p class="text-align-center"><strong>Is there anything you want to make sure we talk about during the interview? </strong></p><p class="text-align-center">Like any organization you want to promote or something specific that you deal with.</p><p class="text-align-center"><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p class="text-align-center">How decoupled health and looks are and the really psychotic way society sees the female form</p> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcce2c483bcf3c2506b/1512272512920/crohns-disease-and-toxic-friend-cleanse-chronic-illness-podcast.JPG" data-image-dimensions="390x650" data-image-focal-point="0.5,0.5" alt="Crohn's Disease This Week on Invisible Not Broken a Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcce2c483bcf3c2506b/1512272512920/crohns-disease-and-toxic-friend-cleanse-chronic-illness-podcast.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fccf9619ac01bf2b950/1512272565467/chronic-illness-blog-crohns-disease.JPG" data-image-dimensions="390x650" data-image-focal-point="0.5,0.5" alt="A Chronic Illness Podcast: This Week Crohn's Disease" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fccf9619ac01bf2b950/1512272565467/chronic-illness-blog-crohns-disease.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcd8165f50677eaa447/1512272648912/crohns-disease-and-dating.JPG" data-image-dimensions="390x650" data-image-focal-point="0.5,0.5" alt="Chronic Illness Podcast: Relationships and Crohn's Disease" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcd8165f50677eaa447/1512272648912/crohns-disease-and-dating.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcdf9619ac01bf2b95c/1512272602047/crohns-disease-invisible-illness-podcast.JPG" data-image-dimensions="390x650" data-image-focal-point="0.5,0.5" alt="A Chronic Illness Blog: This Week Crohn's Disease" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a236fcc53450a52b5e82c54/5a236fcdf9619ac01bf2b95c/1512272602047/crohns-disease-invisible-illness-podcast.JPG?format=1000w" /><br>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Crohn's Disease: College and Invisible Illness, Parenting with Invisible Illness, Joys and Pitfalls of Canadian Healthcare, and The Ultimate Toxic Friend Cleanse</itunes:subtitle><itunes:summary>This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has Crohn's Disease. | |
| Learn about what a diagnosis like Crohn's can be like in college, dating with a chronic illness, the Canadian healthcare system, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>01:02:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a2185f79140b7638e29589c/1512397839571/1500w/crohns-disease-and-dating.JPG"/><itunes:title>Chronic Illness Podcast: Crohn's Disease</itunes:title><content:encoded><![CDATA[<h1>This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's Disease</a>.</h1><h2>Learn about what a diagnosis like <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's</a> can be like in college, dating with a chronic illness, <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pubmed/18957400">the Canadian healthcare system</a>, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.</h2><p><strong>What is your disorder? *</strong></p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304">Crohn's Disease</a></p><p><strong>At what age did your disorder become a daily issue? *</strong></p><p>21</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>Adventurous World Traveller</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>Spontaneous Travel</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>I'm never quite sure when I wake up how the day will be. And I'm afraid of food.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Ingredients lists on everything!</p><p><strong>Do you have any life hacks?</strong> *</p><p>Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's about</p><p><strong>What kind of support do you get from family or friends? </strong>*</p><p>My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance?</strong> *</p><p>Yes, in overt and subtle ways.</p><p><strong>Has this been a positive or negative experience? </strong>*</p><p>Having to justify the hard choices my illness forces on me to some judgemental asshole sucks</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or family</p><p><strong>How has your invisible illness affected your relationships? </strong>*</p><p>I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were before</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>Not really</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understood</p><p><strong>What is your best coping mechanism? </strong>*</p><p>Laughter</p><p><strong>What are you the most fearful of and hopeful for in the future? *</strong></p><p>Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in that</p><p><strong>What is your favorite swear word?</strong></p><p>Scroat</p><p><strong>Is there anything you want to make sure we talk about during the interview? </strong></p><p>Like any organization you want to promote or something specific that you deal with.</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>How decoupled health and looks are and the really psychotic way society sees the female form</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a236ebdc83025304294087a/1512271784780/chrones-chronic-illness-podcast.mp3" length="88917808" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a236ebdc83025304294087a/1512271784780/chrones-chronic-illness-podcast.mp3" length="88917808" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Chronic Illness Podcast: Crohn's Disease</media:title></media:content></item><item><title>A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 27 Nov 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/opioid-epedemic-chronic-pain-management</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a1b273c24a694106d967228</guid><description>Click title to listen to our chronic illness podcast all about chronic pain | |
| management which is now privately being called the opioid crisis in four | |
| letter words. | |
| This administration moralizes those who are weak and helpless, they are not | |
| going to the pharmacies forcing them to stop or change. | |
| Privilege and pain management | |
| Snake oil | |
| True cost of chronic pain | |
| Opioid epidemic in hands of pain doctors this is not moral | |
| Hope on the scaffold pain management and desperation</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e5c83025aa866b6787/1511740490285/Real-Talk-Chronic-Pain-and-Pain-Managment-chronic-illness-podcast.JPG" data-image-dimensions="1363x2048" data-image-focal-point="0.5,0.5" alt="A Chronic Illness Podcast About Chronic Pain Management " data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e5c83025aa866b6787/1511740490285/Real-Talk-Chronic-Pain-and-Pain-Managment-chronic-illness-podcast.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e671c10b644bb7729c/1511740511836/opioid-epedemic-chronic-illness-podcast.JPG" data-image-dimensions="1364x2048" data-image-focal-point="0.5,0.5" alt="The Opioid Epidemic In Four Letter Words" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e671c10b644bb7729c/1511740511836/opioid-epedemic-chronic-illness-podcast.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e5e2c483f5adf6ef63/1511740531934/economic-cost-of-chronic-illness.JPG" data-image-dimensions="1363x2048" data-image-focal-point="0.5,0.5" alt="The Cost Of Have A Chronic Illness" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a1b27e40d92971bbcf49b0f/5a1b27e5e2c483f5adf6ef63/1511740531934/economic-cost-of-chronic-illness.JPG?format=1000w" /><br> | |
| <h1 class="text-align-center">A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast.</h1><p>Kyros and I have dealt with Chronic pain for years. You can listen to either of our episodes to hear about <a target="_blank" href="https://itunes.apple.com/us/podcast/bear-zombie-leg-food-allergy-mortons-neuroma-living/id1272292605?i=1000391811623&mt=2">Kyros's</a> <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/symptoms-causes/syc-20351935">Morton's neuroma </a>and <a target="_blank" href="https://itunes.apple.com/us/podcast/ehlers-danlos-fibromyalgia-pots-mca-collect-them-all/id1272292605?i=1000392380869&mt=2">Monica Michelle's </a> <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia,</a> <a target="_blank" href="http://www.dysautonomiainternational.org/page.php?ID=30">POTS</a>, and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a></p><h2>We go over the true cost of having a chronic illness and/ or chronic pain.</h2><h2>The opioid crisis and the feelings from someone who is a patient and is in chronic pain with chronic illness.</h2><h2>Medical Marijuana and pain therapy.</h2><h2>Privilege and pain management.</h2><h3>Don't forget to share the podcast with someone in your life who has chronic pain.</h3><hr /><h2 class="text-align-center">Links To Articles Cited</h2><hr /><p><a target="_blank" href="https://www.consumerreports.org/vitamins-supplements/from-our-president-whats-in-your-supplement/">What's in Your Supplement</a></p><p><a target="_blank" href="https://jamanetwork.com/journals/jama/article-abstract/2338266">Medical Marijuana for Treatment of Chronic Pain and Other Medical and Psychiatric ProblemsA Clinical Review</a></p><p><a href="http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html">Some People Still Need </a><a href="http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html">Opioids</a></p><p><a target="_blank" href="http://www.thecannifornian.com/cannabis-news/law/parents-facing-custody-issues-marijuana-see-hope-prop-64/">Even in legal weed states, parents who consume pot can still lose custody of their kids</a></p><hr /><h1 class="text-align-center">Links To Products for Chronic Pain Management Mentioned</h1><hr /><p><a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-are-cannabis-topicals">Medical Marijuana Rub</a> (If you live in a medical marijuana state. If not please contact your congressperson relentlessly).</p><p><a target="_blank" href="https://www.quellrelief.com/quell-digital/?gclid=Cj0KCQiA6enQBRDUARIsAGs1YQj8oP4Zc1le-zryAZ48lzTNUkDCKwiUs-PmcIBiQfFY_6dQX4L5Ds0aAh5hEALw_wcB">Quell</a></p><p><a target="_blank" href="http://www.imdb.com/title/tt7291268/">Lady Gaga 5'2 Documentary</a></p><p><a target="_blank" href="https://www.amazon.com/Ergobaum%C2%AE-Ergoactives-Ergonomic-Forearm-Crutches/dp/B00LGZ43E2/ref=sr_1_2_a_it?ie=UTF8&qid=1511739034&sr=8-2&keywords=smart+crutches">Smart Crutches</a></p><p><a target="_blank" href="http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html">A Better Pain Scale</a> because you know after this chronic pain podcast you need a laugh.</p><hr /><h1 class="text-align-center">Thank you so much for listening to our chronic illness podcast. Can you please</h1><ol dir="ltr"><li>Share us with a person dealing with chronic illness.</li><li>Please <a target="_blank" href="https://itunes.apple.com/us/podcast/invisible-not-broken/id1272292605?mt=2">subscribe</a> if you haven't.</li><li>Say something really nice about us on <a target="_blank" href="https://itunes.apple.com/us/podcast/invisible-not-broken/id1272292605?mt=2">iTunes</a></li></ol>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Real Talk on Chronic Pain Management Chronic Illness Podcast</itunes:subtitle><itunes:summary>A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>49:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a1b273c24a694106d967228/1511793022727/1500w/opioid-epedemic-chronic-illness-podcast.JPG"/><itunes:title>A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<h1>A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast.</h1><p>Kyros and I have dealt with Chronic pain for years. You can listen to either of our episodes to hear about <a target="_blank" href="https://itunes.apple.com/us/podcast/bear-zombie-leg-food-allergy-mortons-neuroma-living/id1272292605?i=1000391811623&mt=2">Kyros's</a> <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/symptoms-causes/syc-20351935">Morton's neuroma </a>and <a target="_blank" href="https://itunes.apple.com/us/podcast/ehlers-danlos-fibromyalgia-pots-mca-collect-them-all/id1272292605?i=1000392380869&mt=2">Monica Michelle's </a> <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">fibromyalgia,</a> <a target="_blank" href="http://www.dysautonomiainternational.org/page.php?ID=30">POTS</a>, and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers Danlos</a></p><h2>We go over the true cost of having a chronic illness and/ or chronic pain.</h2><h2>The opioid crisis and the feelings from someone who is a patient and is in chronic pain with chronic illness.</h2><h2>Medical Marijuana and pain therapy.</h2><h2>Privilege and pain management.</h2><h3>Don't forget to share the podcast with someone in your life who has chronic pain.</h3><h2>Links To Articles Cited</h2><p><a target="_blank" href="https://www.consumerreports.org/vitamins-supplements/from-our-president-whats-in-your-supplement/">What's in Your Supplement</a></p><p><a target="_blank" href="https://jamanetwork.com/journals/jama/article-abstract/2338266">Medical Marijuana for Treatment of Chronic Pain and Other Medical and Psychiatric ProblemsA Clinical Review</a></p><p><a href="http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html">Some People Still Need </a><a href="http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html">Opioids</a></p><p><a target="_blank" href="http://www.thecannifornian.com/cannabis-news/law/parents-facing-custody-issues-marijuana-see-hope-prop-64/">Even in legal weed states, parents who consume pot can still lose custody of their kids</a></p><h1>Links To Products for Chronic Pain Management Mentioned</h1><p><a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-are-cannabis-topicals">Medical Marijuana Rub</a> (If you live in a medical marijuana state. If not please contact your congressperson relentlessly).</p><p><a target="_blank" href="https://www.quellrelief.com/quell-digital/?gclid=Cj0KCQiA6enQBRDUARIsAGs1YQj8oP4Zc1le-zryAZ48lzTNUkDCKwiUs-PmcIBiQfFY_6dQX4L5Ds0aAh5hEALw_wcB">Quell</a></p><p><a target="_blank" href="http://www.imdb.com/title/tt7291268/">Lady Gaga 5'2 Documentary</a></p><p><a target="_blank" href="https://www.amazon.com/Ergobaum%C2%AE-Ergoactives-Ergonomic-Forearm-Crutches/dp/B00LGZ43E2/ref=sr_1_2_a_it?ie=UTF8&qid=1511739034&sr=8-2&keywords=smart+crutches">Smart Crutches</a></p><p><a target="_blank" href="http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html">A Better Pain Scale</a> because you know after this chronic pain podcast you need a laugh.</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a1b27419140b7c306297772/1511729093374/Invisible+Not+Broken+-+Pain+Management+Panel+discussion.mp3" length="70077807" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a1b27419140b7c306297772/1511729093374/Invisible+Not+Broken+-+Pain+Management+Panel+discussion.mp3" length="70077807" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast</media:title></media:content></item><item><title>Fibromyalgia, A Spoonie in Business, Selfcare, Best Gifts to Give Someone Who has Chronic Illness, & The Joys of Hormones and Chronic Illness</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Wed, 22 Nov 2017 15:36:56 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/11/20/fibromyalgia-a-spoonie-in-business-selfcar-best-gifts-to-give-someone-who-has-chronic-illness-the-joys-of-hormones-and-chronic-illness-x8ph7</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a15984d8165f542d6faf68b</guid><description>Click the title to listen to Invisible Not Broken's interview with Eva Lana | |
| Founder of Wellacopia who runs her business while dealing with her chronic | |
| illness, fibromyalgia | |
| Join Invisible Not Broken, a chronic illness podcast, this week when I | |
| interview Wellacopia founder about her journey so far into the world of | |
| chronic illness, spoonie life, and being a new business owner with | |
| fibromyalgia. Also a great idea for a gift for the spoonie in your life.... | |
| Tempurpedic mattress!</description><content:encoded><![CDATA[<h1>Fibromyalgia and starting a tech business as a spoonie</h1> | |
| <p>I bow down to this rockstar. Eva manages her chronic illness, fibromyalgia and has a tech startup to help us spoonies find the best medical care for our condition. It is called<a target="_blank" href="https://wellacopia.com/"> </a><a target="_blank" href="https://wellacopia.com/">Wellacopia.</a> Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!</p> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a15984d8165f542d6faf680/5a15984d8165f542d6faf681/1510961178079/chronic-illness+podcast-waiting-for+-diagnosis-dogs-on-beach-wellcopia-founder.JPG" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Copy of Chronic Illness & Getting Diagnosis" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a15984d8165f542d6faf680/5a15984d8165f542d6faf681/1510961178079/chronic-illness+podcast-waiting-for+-diagnosis-dogs-on-beach-wellcopia-founder.JPG?format=1000w" /><br> | |
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| <p><strong>Name </strong>*Eva Lana Owner of <a target="_blank" href="https://wellacopia.com/">Wellacopia</a><a target="_blank" href="https://wellacopia.com/"> </a>a health app for spoonies</p><p><strong>Age</strong> *27</p><p><strong>What is your disorder?</strong> *</p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780">Fibromyalgia</a>, <a target="_blank" href="https://www.mayoclinic.org/hypermobility/expert-answers/faq-20058285">hyper-mobility</a><a target="_blank" href="https://www.mayoclinic.org/hypermobility/expert-answers/faq-20058285"> syndrome</a> and undiagnosed GI issues</p><p><strong>At what age did your disorder become a daily issue?</strong> * 12</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>an adventurous person and professional dancer</p><p><strong>What would you do if you were not dealing with your invisible illness? </strong>*</p><p>dance every day</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>I run a startup for people like myself with chronic illnesses while I cope with them myself</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>having the proper support for my specific needs...and better weather</p><p><strong>Do you have any life hacks? </strong>*</p><p>positive mantras and a superb personal support system at home <a target="_blank" href="https://www.tempurpedic.com/">Tempurpedic Mattress</a></p><p><strong>What kind of support do you get from family or friends?</strong> *</p><p>understanding that they don't understand but are willing to be there for me anyway</p><p><strong>Have you ever had someone not believe you have an invisible illness because of your appearance? </strong>*</p><p>of course plus my diagnosis is the known crap-shoot of diagnoses especially because it cant be formally diagnosed</p><p><strong>Has this been a positive or negative experience?</strong> *</p><p>negative but didnt impact me long term</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>I felt the need to explain further. sometimes it worked, sometimes it didnt but regardless I always had to explain that I'm aware of it being a "crap-shoot diagnosis". basically I belittled my own experience but made it clear that it was very real at the same time.</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>It has shown me who my real friends are and a major contributor in feeling that my husband was in fact "the one"</p><p><strong>Is there anything you are afraid to tell even the people closest to you?</strong> *</p><p>I also have <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/bipolar-disorder/expert-answers/bipolar-treatment/faq-20058042">Bipolar disorder type 2 </a>(more like rolling hills of emotions rather than manic sharp spikes). I dont talk about it because I use to be a "drama queen" and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/bipolar-disorder/expert-answers/bipolar-treatment/faq-20058042">bipolar</a> sounds really bad, even if they can kinda get what type 2 is in comparison to type 1. some say I'm just emotional. also I'm sure it contributes to my illnesses, and others may think I am faking it BECAUSE I use to be dramatic.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you? </strong>*</p><p>Of course, but not just because they are invisible but even blood tests and scans don't really show anything, so empirically I am "fine"</p><p><strong>What is your best coping mechanism?</strong> *</p><p>Meditation and exercise when I can and generally having good people around me who understand</p><p><strong>What are you the most fearful of and hopeful for in the future? </strong>*</p><p>I am scared of degeneration as I grow older, pregnancy and post-partum as well</p><p><strong>What is your favorite swear word</strong>?</p><p>FUCK =)</p><p><strong>Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview?</strong> *</p><p>My bipolar?</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p><a target="_blank" href="https://wellacopia.com/">wellacopia</a></p><p><strong>Any questions you think we should add to this list?</strong></p><p>I guess this is too late</p><p><strong>What is the hardest and/or best lesson your condition has taught you?</strong></p><p>your illness doesn't define you - or you can let it but only for the better</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Fibromyalgia and Starting Wellacopia, a Tech Business With A Chronic Illness</itunes:subtitle><itunes:summary>I bow down to this rockstar. Eva manages her chronic illness, fibromyalgia and has a tech startup to help us spoonies find the best medical care for our condition. It is called Wellacopia. Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!</itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>01:02:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5a15984d8165f542d6faf68b/1511365016778/1500w/fibromyalgia-romance-and-chronic-illness-interview-with-wellcopia-tech-founder-Eva-Lana.JPG"/><itunes:title>Fibromyalgia and Starting Wellacopia, a Tech Business With A Chronic Illness</itunes:title><content:encoded><![CDATA[<p>I bow down to this rockstar. Eva manages her chronic illness,<a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780"> fibromyalgia </a>and has a tech startup to help us spoonies find the best medical care for our condition. It is called<a target="_blank" href="https://wellacopia.com/"> </a><a target="_blank" href="https://wellacopia.com/">Wellacopia.</a> Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a15984d8165f542d6faf67e/1510780174145/eva-fibromyalgia-chronic-illness-podcast.mp3" length="87883986" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a15984d8165f542d6faf67e/1510780174145/eva-fibromyalgia-chronic-illness-podcast.mp3" length="87883986" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">Fibromyalgia and Starting Wellacopia, a Tech Business With A Chronic Illness</media:title></media:content></item><item><title>The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 13 Nov 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/ra-autoimmune-chroni-pain-vasculitis-buergers-disease-wegeners-granulomatos-traviling-with-chronic-illness-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59ec0eb22278e7aa8e85e35a</guid><description>Click on title to listen to chronic illness podcast</description><content:encoded><![CDATA[<img class="thumb-image" alt="INB-RobbieMiller-vasculitis-buergers-disease-wegners-granulomatosis-invisible-illness-podcast.png" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a07390cf9619a1bb0dd83ed/1510422908675/INB-RobbieMiller-vasculitis-buergers-disease-wegners-granulomatosis-invisible-illness-podcast.png" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="5a07390cf9619a1bb0dd83ed" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a07390cf9619a1bb0dd83ed/1510422908675/INB-RobbieMiller-vasculitis-buergers-disease-wegners-granulomatosis-invisible-illness-podcast.png?format=1000w" /> | |
| <figure> | |
| <blockquote> | |
| <span>“</span>What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Robbie</figcaption> | |
| </figure><figure> | |
| <blockquote> | |
| <span>“</span>Take a cantelope and try to squeeze it through a blood vessal in your eye.<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Robbie</figcaption> | |
| </figure><figure> | |
| <blockquote> | |
| <span>“</span>It’s like your trapped inside a shell<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Robbie</figcaption> | |
| </figure><p>This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him.</p><hr /><h1 class="text-align-center"><strong>Links From The Podcast</strong></h1><hr /><p>Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels.</p><p> </p><p><a href="https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435">Vasculitis</a></p><p><a href="https://www.hopkinsvasculitis.org/types-vasculitis/buergers-disease/">Buerger's Disease</a></p><p><a href="https://www.hopkinsvasculitis.org/types-vasculitis/wegeners-granulomatosis/">Wegener's granulomatosis</a></p><p><a href="https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648">Rheumatoid arthritis</a></p><p><a href="https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061">Neuropathy</a></p><p><a href="https://www.tsa.gov/blog/2014/09/05/tsa-travel-tips-traveling-medication">TSA rules on traveling with medication</a></p><p><a href="https://en.wikipedia.org/wiki/Medical_cannabis">Medical Cannabis </a></p><p>Magnet is now known as <a href="http://strutsf.org/">StrutSF</a></p><p><a href="https://medlineplus.gov/autoimmunediseases.html">Autoimmune Diseases</a></p><p><a href="https://www.cdc.gov/meningitis/bacterial.html">Bacterial Meningitis </a></p><p><a href="http://edition.cnn.com/2017/05/03/world/eco-solutions-capsula-mundi/index.html">Biodegradable burial pods</a></p><p><a href="https://www.webmd.com/palliative-care/advance-directives-medical-power-attorney%231">Advanced directive</a></p><p><a href="https://www.youtube.com/watch?v=awlfuF3wxdo">Bridegroom movie</a></p><p><a href="https://www.queerty.com/photographer-annie-leibovitz-is-certainly-paying-the-death-tax-for-lover-susan-sontags-estate-20090306">Annie Leibovitz</a></p><p><a href="https://en.wikipedia.org/wiki/Frak_(expletive)">Frak</a></p><h2 class="text-align-center">Invisible Not Broken - Robbie Miller Questionnaire answers</h2><p> </p><p><strong>Name:</strong> Robbie Miller</p><p><strong>Age:</strong> 36</p><p><strong>Disorders</strong>: <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/buergers-disease/symptoms-causes/syc-20350658">Buerger's Disease</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088">Wegener's Granulomatosis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648">RA</a>, <a target="_blank" href="https://www.mayoclinic.org/understanding-pain/art-20208632">Chronic Pain</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061">Neuropathy</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435">Vasculitis</a>, <a target="_blank" href="https://connect.mayoclinic.org/group/autoimmune-diseases/">Autoimmune</a></p><p><strong>Age disorder became a daily issue</strong>: 22</p><p><strong>Is there anything you would do if you were not sick?</strong> : Would have finished College Degree and be employed</p><p><strong>What should other people know about our daily life?</strong>: Each new day there are challenges some good some bad but its how you deal with them.</p><p><strong>What would make living and moving in the world easier for you?</strong>: Peoples Understanding that because you do not show any external ailment that some medical disorders are debilitating which limits some basic activities</p><p><strong>Life hacks?</strong>: <a target="_blank" href="https://scholar.google.com/scholar?q=meditation+and+chronic+pain&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwil-Yugk7fXAhUL8mMKHc_pDhEQgQMILjAA">Meditation</a>, <a target="_blank" href="https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&as_vis=1&q=acupuncture+and+chronic+pain&btnG=">Acupuncture</a>, Never meeting a stranger talking to individuals from all walks of life in person and online. </p><p><strong>Support from family or friends?</strong>: Family Support, Support from friends and friends made online</p><p><strong>Do you find that people do not believe you are sick because of your appearance?</strong> : Yes</p><p><strong>How has this affected you positive or negative?</strong>: The positive effect is that I get to spend time with those I love more</p><p><strong>How has this affected your relationships?</strong>: Yes when originally diagnosed I lost individuals who I thought were friends and those that truly loved me.</p><p><strong>What are you afraid to tell even the people closest to you?</strong>: Basically, nothing, as I try to live my life as an open book, try to help others understand the variety of <a target="_blank" href="https://connect.mayoclinic.org/group/autoimmune-diseases/">Auto-Immune Diseases</a></p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong>: Yes</p><p><strong>Best coping mechanism?</strong>: Communication, therapy</p><p><strong>What are you the most fearful of and what are you the most hopeful for in the future?</strong>: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure</p><p><strong>Favorite swear word?</strong>: Frack</p><p> </p><hr /><p> </p><h1 class="text-align-center"> </h1>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Chronic Illness Podcast Hazards Of Travel With Chronic Illness Great Life Hacks For Chronic Pain & Truly A Lovely Man</itunes:subtitle><itunes:summary>This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him. | |
| Show Notes | |
| Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels. | |
| Vasculitis | |
| Buerger's Disease | |
| Wegener's granulomatosis | |
| Rheumatoid arthritis | |
| Neuropathy | |
| TSA rules on traveling with medication | |
| Medical Cannabis | |
| Magnet is now known as StrutSF | |
| Autoimmune Diseases | |
| Bacterial Meningitis | |
| Biodegradable burial pods | |
| Advanced directive | |
| Bridegroom movie | |
| Annie Leibovitz | |
| Frak | |
| </itunes:summary><itunes:explicit>no</itunes:explicit><itunes:duration>56:01</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59ec0eb22278e7aa8e85e35a/1510583446031/1500w/INB-RobbieMiller.png"/><itunes:title>The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast</itunes:title><content:encoded><![CDATA[<p>This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him.<br />Show Notes<br />Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels.</p><p>Vasculitis</p><p>Buerger's Disease</p><p>Wegener's granulomatosis</p><p>Rheumatoid arthritis</p><p>Neuropathy</p><p>TSA rules on traveling with medication</p><p>Medical Cannabis </p><p>Magnet is now known as StrutSF</p><p>Autoimmune Diseases</p><p>Bacterial Meningitis </p><p>Biodegradable burial pods</p><p>Advanced directive</p><p>Bridegroom movie</p><p>Annie Leibovitz</p><p>Frak</p><p>Invisible Not Broken - Robbie Miller Questionnaire answers</p><p>Name: Robbie Miller</p><p>Age: 36</p><p>Disorders: Buerger's Disease, Wegener's Granulomatosis, RA, Chronic Pain, Neuropathy, Vasculitis, Autoimmune</p><p>Age disorder became a daily issue: 22</p><p>Is there anything you would do if you were not sick? : Would have finished College Degree and be employed</p><p>What should other people know about our daily life?: Each new day there are challenges some good some bad but its how you deal with them.</p><p>What would make living and moving in the world easier for you?: Peoples Understanding that because you do not show any external ailment that some medical disorders are debilitating which limits some basic activities</p><p>Life hacks?: Meditation, Acupuncture, Never meeting a stranger talking to individuals from all walks of life in person and online. </p><p>Support from family or friends?: Family Support, Support from friends and friends made online</p><p>Do you find that people do not believe you are sick because of your appearance? : Yes</p><p>How has this affected you positive or negative?: The positive effect is that I get to spend time with those I love more</p><p>How has this affected your relationships?: Yes when originally diagnosed I lost individuals who I thought were friends and those that truly loved me.</p><p>What are you afraid to tell even the people closest to you?: Basically, nothing, as I try to live my life as an open book, try to help others understand the variety of Auto-Immune Diseases</p><p>Does the fact that your disease is invisible change how healthcare professionals treat you?: Yes</p><p>Best coping mechanism?: Communication, therapy</p><p>What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure</p><p>Favorite swear word?: Frack</p>]]></content:encoded><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a073988c83025174ddd7ecb/1510423068287/InvisibleNotBroken-RobbieMillerFullInterview.mp3" length="80429684" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5a073988c83025174ddd7ecb/1510423068287/InvisibleNotBroken-RobbieMillerFullInterview.mp3" length="80429684" type="audio/mpeg" isDefault="true" medium="audio"><media:title type="plain">The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast</media:title></media:content></item><item><title>Real Romance: Carbs and Insulin Diabetes and Colitis: Parenting With Chronic Illness: Invisible Illness Serial Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 06 Nov 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/10/24/real-romance-carbs-and-insulin</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59efac3d51a5849ee957b202</guid><description>Click Title To Listen To Our Chronic Illness Podcast (and don't forget to | |
| order Vanessa's adorable children's book!) | |
| </description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>The reminding part can be absolutely exhausting. When you feel like you’re talking to a brick wall (parenting with chronic illness)<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Vanessa</figcaption> | |
| </figure> | |
| <a href="https://www.amazon.com/Silly-Squeaky-Cheeky-Floppy-Family-ebook/dp/B00X0FHSMK?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00X0FHSMK" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/61a%2BcAzjlGL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Silly-Squeaky-Cheeky-Floppy-Family-ebook/dp/B00X0FHSMK?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00X0FHSMK" target="new" class="product-title title">My Silly Billy, Squeaky Cheeky, Floppy Poppy Family</a> | |
| <span class="list-price"></span> | |
| By Vanessa Jean Locke | |
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| <p> </p><h3 class="text-align-center"><strong>Disorder Info</strong></h3><p><strong>Name</strong> *Vanessa Jean Locke</p><p><strong>Age</strong> * 44</p><p><strong>What is your disorder? *</strong></p><p><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/symptoms-causes/syc-20353011">Diabetes Type 1</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326">Ulcerative Colitis</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284">Hypo Thyroid</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/vitiligo/symptoms-causes/syc-20355912">Vitiligo</a> and <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216">Sjogrens (eyes)</a></p><p><strong>At what age did your disorder become a daily issue? </strong>*</p><p>11</p><p><strong>Who were you before your illness became debilitating? </strong>*</p><p>I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!</p><p><strong>What would you like people to know about your daily life?</strong> *</p><p>I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.</p><p><strong>What would make living and moving in the world easier for you?</strong> *</p><p>Beyond a cure, affordability of the continuous <a target="_blank" href="https://www.dexcom.com/continuous-glucose-monitoring">glucose monitoring (CGM) system would</a> help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.</p><p><strong>Do you have any life hacks? </strong>*</p><p>When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, <a target="_blank" href="https://www.amazon.com/Not-Your-Mothers-Tapioca-Shampoo/dp/B01LXR79UQ/ref=sr_1_12_s_it?s=beauty&ie=UTF8&qid=1509736128&sr=1-12&keywords=dry+shampoo">dry shampoo </a>helps me look as though I've washed my hair and<a target="_blank" href="https://www.kiehls.com/bb-cream-actively-correcting-and-beautifying-with-spf-50-pa/3605970394455.html"> B.B. cream</a> is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.</p><p><strong>How has your invisible illness affected your relationships?</strong> *</p><p>I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.</p><p><strong>Is there anything you are afraid to tell even the people closest to you? </strong>*</p><p>Big question. I’m not sure I’m ready to answer.</p><p><strong>What is your best coping mechanism?</strong> *</p><p>My mind.</p><p><strong>What are you the most fearful of and hopeful for in the future?</strong> *</p><p>Fearful: further autoimmunities corrupting my body. I wonder if it will be an<a target="_blank" href="https://www.aarda.org/diseaselist/"> autoimmune </a>condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize <a target="_blank" href="http://www.jdrf.org/">Diabetes</a>. I am hopeful and expectant that none of my disorders have been passed to my children.</p><p><strong>What is your favorite swear word?</strong></p><p>SHIT!!!</p><p><strong>Is there anything you want to make sure we talk about during the interview? Like </strong><strong>an</strong><strong> organization you want to promote or something specific that you deal with.</strong></p><p>My I<strong><a target="_blank" href="https://www.instagram.com/vanessa_jean_locke/">nstagram</a></strong> page and <a target="_blank" href="http://www.facebook.com/vanessajeanlockebooksmadewithheart"><strong>Facebook page</strong></a></p><p><strong>Any questions you think we should add to this list?</strong></p><p>What’s the hardest/best lesson your condition has taught you?</p><p><strong>Monica's Note:</strong> We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics <a target="_blank" href="http://hyperboleandahalf.blogspot.com/">Hyperbole and a Half</a> by <a target="_blank" href="http://www.motherjones.com/media/2013/10/allie-brosh-hyperbole-half-book-depression/">Allie Brosh</a> In <a target="_blank" href="http://hyperboleandahalf.blogspot.com/search?updated-max=2013-05-09T08:55:00-06:00&max-results=10&start=1&by-date=false">episode 1</a> and <a target="_blank" href="http://hyperboleandahalf.blogspot.com/search?updated-max=2013-10-02T14:53:00-06:00&max-results=10">episode </a><a target="_blank" href="http://hyperboleandahalf.blogspot.com/search?updated-max=2013-10-02T14:53:00-06:00&max-results=10">2</a> she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.</p> | |
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| <p> </p><p> </p><p>.</p><p> </p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Type1 Diabetes & Colitis The Ultimate Carb Diet Balancing Act: Marriage and Chronic Illness: Parenting and Invisible Illness</itunes:subtitle><itunes:summary>Vanessa's Disorder Info | |
| Name *Vanessa Jean Locke | |
| Age * 44 | |
| What is your disorder? * | |
| Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes) | |
| At what age did your disorder become a daily issue? * | |
| 11 | |
| Who were you before your illness became debilitating? * | |
| I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life. | |
| What would you do if you were not dealing with your invisible illness? * | |
| Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though! | |
| What would you like people to know about your daily life? * | |
| I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again. | |
| What would make living and moving in the world easier for you? * | |
| Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures. | |
| Do you have any life hacks? * | |
| When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not. | |
| What kind of support do you get from family or friends? * | |
| Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about. | |
| How has your invisible illness affected your relationships? * | |
| I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy. | |
| Is there anything you are afraid to tell even the people closest to you? * | |
| Big question. I’m not sure I’m ready to answer. | |
| What is your best coping mechanism? * | |
| My mind. | |
| What are you the most fearful of and hopeful for in the future? * | |
| Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children. | |
| What is your favorite swear word? | |
| SHIT!!! | |
| Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with. | |
| My Instagram page and Facebook page | |
| Any questions you think we should add to this list? | |
| What’s the hardest/best lesson your condition has taught you? | |
| Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:06:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59efac3d51a5849ee957b202/1522543346776/1500w/romance-and-chronic-illness.JPG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59fcb48e64265ff13c514300/1509733736189/Vanessa.mp3" length="94624832" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59fcb48e64265ff13c514300/1509733736189/Vanessa.mp3" length="94624832" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>EDS,MCA, POTS, Collect Them All: German Socialized Medicine, Medical Marijuana, UBER WE HAVE AN IDEA FOR YOU: Chronic Illness Serial Podcast</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 30 Oct 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/10/25/edsmca-pots-and-the-ever-expanding-acronyms-socialized-medicine-medical-marijuana-uber-we-have-an-idea-for-you-chronic-illness-serial-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59f0d261edaed819b5b570d4</guid><description>Click title to read chronic illness blog and our Q&A about Ehlers Danlos, | |
| socialized medicine, POTS, MCA, and medical marijuana</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a0b92a5f9619af69148bdb6/5a0b92a671c10b2dbd99dc96/1510708083406/chiari-eds-once-upon-a-time.jpg" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Chiari, Chronic Pain, Ehlers Danlos Syndrome, and chronic illness podcast episode " data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a0b92a5f9619af69148bdb6/5a0b92a671c10b2dbd99dc96/1510708083406/chiari-eds-once-upon-a-time.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a0b92a5f9619af69148bdb6/5a0b92a6e4966b17e985cb6e/1510708132347/Travel-and-chronic-illness-podcast.PNG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Travel and Chronic Pain: Chronic Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/5a0b92a5f9619af69148bdb6/5a0b92a6e4966b17e985cb6e/1510708132347/Travel-and-chronic-illness-podcast.PNG?format=1000w" /><br> | |
| <figure> | |
| <blockquote> | |
| <span>“</span>I had always defined myself by my achievements <span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Karina</figcaption> | |
| </figure> | |
| <hr /><p>I have made choice of not doing just one or even two posts of a diagnosis (you might remember my<a href="http://invisiblenotbroken.com/home?tag=Ehlers%20Danlos"> interview</a>). The reason is that each of us have a different experiance with our disorders and I want to show how wildly different stories can be even when they live under the same diagnosis. OK, off my soap box I have you really enjoy hear from Karina and hearing about her journey. You will learn so much from pain medication guilt, medical, marijuana, the niaviete before chronic illness, and I learned so much about socialized medicine in Germany and the differences with the ACA.</p><hr /><p><strong>What is your disorder?</strong> *</p><p><a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125">Ehlers-Danlos Syndrome</a> and <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2713155/">comorbid conditions</a> (<a target="_blank" href="https://www.ehlers-danlos.com/2012-annual-conference-files/Durrani_EDS_talk_8-10-12_3notesS.pdf">spinal instabilities</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859">mast cell activation</a>, <a target="_blank" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/">small fiber neuropathy</a>, <a target="_blank" href="https://www.mayoclinic.org/medical-professionals/clinical-updates/endocrinology/postural-orthostatic-tachycardia-syndrome-and-chronic-fatigue-in-adolescents">dysautonomia</a> and others) - 15 diagnoses by now.</p><p><strong>At what age did your disorder become a daily issue?</strong> *</p><p>24</p><p><strong>Who were you before your illness became debilitating?</strong> *</p><p>I would say that I was really naive. I thought nothing could ever hurt me. In 2009, I just started my career as a lab technician, moved into my first apartment, and everything was just fine. I was self-confident and a perfectionist. Moreover, I had a 5-year-plan that included marrying, building a house, working for doctors without borders, adopting a child, and many more. Playing volleyball and other sports were my life - I was super competitive and ambitious, which I still am, but in a different way, and other areas.</p><p><strong>What would you do if you were not dealing with your invisible illness?</strong> *</p><p>There is a lot I would do if I were not sick! For example, traveling around the world (parts of the world are just not accessible for me anymore), dancing, bungee jumping, weird sports I cannot do anymore, <strong>building up a lab in Africa</strong>, learning how to sail, hiking the pacific crest trail. Anyway, I would want to have the knowledge that I gained due to my illness with, because only now can I really appreciate all those things I had when I was healthy.</p><p><strong>What would you like people to know about your daily life? </strong>*</p><p>…that I try very hard to be the best friend I can be. …that I feel horrible every time I have to say the words," I am sorry, I have to cancel." …<strong>that there is no such thing as a good day.</strong> There are better or worse days, but no more good ones. …that every day brings new challenges. …that even the smallest thing, such as taking a shower, can cause major symptoms. …that even though I might not be working a full-time job, I still am not sitting on my couch and stare holes into the wall. And if I do, it is not my choice, and absolutely not because I am lazy, but because it is the only way to get through the day. …that having a doctors appointment is pretty dramatic for me sometimes, because I made so many bad experiences, but still need my doctors. …that work that is not paid is still valuable and important. …that I do my best to achieve my goals, but the goals are sometimes maybe as simple as getting out of bed in the morning. …that I do not need any special treatment. I do not expect anything, and I do not set rules how I want to be treated. I do not feel offended by things like "I pray for you" or "Get better soon“. While I am not very religious, and most likely will not get better, I appreciate any good wish and thought.</p><p><strong>What would make living and moving in the world easier for you? *</strong></p><p>People that are more tolerant. Let me tell you a story. A couple of weeks ago, I went grocery shopping with my husband on a Sunday, like we always do. I cannot go by myself, because we do not own a car, so someone has to carry 30 pounds of groceries home. Going shopping is kind of a huge activity for me. By the time we finished, we had to take the metro home. It is only two stops, so I managed to stand during the whole time. I was wearing my neck brace, and that was the only obvious sign of my disability. A man standing next to me looked confused to me a couple of times until he said, "Hey, that must hurt, do you want me to ask someone here to get up?" He was pointing at the disability seats that were already taken. <strong>I was super surprised because nobody ever asked me anything like this in San Francisco.</strong> Usually, if I sit on those seats reserved for people with disabilities, people tend to give me bad looks when I do not get up for an old lady. But this time someone else asked me if I needed to sit down. <strong>If all people were like this guy, my life would be a lot easier. I was moved to tears by his gesture.</strong></p><p><strong>Do you have any life hacks? *</strong></p><p>What I love most is my Aspen neck brace and my <a target="_blank" href="https://www.amazon.com/s/ref=nb_sb_ss_i_6_6?url=search-alias%3Dhpc&field-keywords=memory+foam+seat+cushion&sprefix=memory%2Chpc%2C219&crid=26TM8DEGGABLC">memory foam seat cushion.</a> I am not going anywhere without those two. The latter one literally saves my ass. Other than that, I am sleeping with a <a target="_blank" href="https://www.google.com/search?q=u+shaped+pregnancy+pillow&oq=u+shaped+pregnancy+pillow&aqs=chrome..69i57j0l5.6008j0j4&sourceid=chrome&ie=UTF-8">u-shaped pregnancy pillow</a> that supports all my joints. I like shoes that go over my ankles, to give me additional support when walking. Pants that sit tight help with<a target="_blank" href="https://www.merriam-webster.com/dictionary/proprioception"> proprioception</a>, and <a target="_blank" href="https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=compression+stockings">compression stockings </a>work well for dysautonomia and stability too. I use other braces for almost all of my joints; and a backpack with support around my hips, so not all the weight is on my back.</p><p><strong>What kind of support do you get from family or friends? *</strong></p><p>Luckily, I only lost a couple of important people. The majority is still with me. Some friends could not really deal with the "new“ me, and one relationship did not survive my changes.<strong> Becoming a butterfly that grows out of a rope is a huge transition, and some loved ones could take it better than others.</strong> To be fair, I was not easy to handle - especially in the beginning (2010).<strong> I had no idea who I was anymore, so how could other people know?</strong> My family and friends support me physically, for example drive me to appointments since I cannot drive by myself; they pick me up if we want to have a coffee together; and they also support me mentally if I had a bad appointment or just a very shitty day.</p><p><strong>Would you care to relate the details of what happened when someone didn't believe you were disabled?</strong></p><p>That is pretty typical. People tend to judge quickly based on appearance. Not sure why, because every one of us knows how to smile even if we do not feel like smiling. It is not so hard to see below this surface of "I am ok," and to recognize how the person really feels. But that would take some effort, and many people just do not want to get to know the real "me". It affected me in a very negative way. Sometimes I would not go outside even though I had a better day, because I worried that I would meet people that could assume that I am healthy. I felt like I was proving them right if I left my house and enjoyed the day. At some point I understood that this was just stupid. People assume whatever they want, and they will judge you anyway. It is a waste of your good moments if you do not go out and live your life when you can.</p><p><strong>How has your invisible illness affected your relationships? *</strong></p><p>I do not think that the invisibility of my condition in particular affected my relationship. My husband is very supportive and my ex broke up with me because we both could not handle my disease during that time. I do not think that anyone close to me has a problem with the invisibility of my illnesses. They know exactly how I feel as soon as they look into my eyes. It is mainly people I do not know that act weird around me. But of course being chronically ill affects any relationship. There are always things to consider, even for the smallest activity, and there is always a problem.</p><p><strong>Is there anything you are afraid to tell even the people closest to you? *</strong></p><p>I am somehow afraid to tell them that I feel very alone sometimes. They would feel as if I just told them they did not try hard enough to be there for me, but that is not it. The problem is more that, even though everyone is there for me, some days just suck so much that I just feel completely alone on this planet. Also, I am scared like hell to be all alone at some point of my illness, because I really do not know how to survive without the physical support of my family and friends. Another thing I should not even think, and of course not say, is that I am jealous of some of their perfect lives. Of course, they deserve to be happy, and I hate myself for feeling this way occasionally. But sometimes it just hurts to see how my friends can have families and normal lives.</p><p><strong>What is your best coping mechanism? *</strong></p><p>Writing! Whether I only write for myself, for example in a diary, or in public, I write every minute I feel ok. It became my passion and my sense in life.</p><p><strong>What are you the most fearful of and hopeful for in the future? *</strong></p><p>Fearful: I fear the moment when my disease will get to a point where I am unable to advocate for myself. Because without this ability, rare disease patients are completely lost. Hopeful: I think the <a target="_blank" href="https://www.ehlers-danlos.com/">EDS community </a>is doing a great job in raising awareness, and this will hopefully lead to a broader understanding of our condition, more diagnosed patients and then more doctors to treat us.</p><p><strong>What is your favorite swear word?</strong></p><p>Oh gosh, many. :) I love to swear. Not so much in English, since it is not my first language. My favorite English words: Holy Shit, Fuck it, Holy Fuck. German: Verfickte Scheiße. I am a horrible person.</p><hr /><p><strong>Learn More About Karina</strong></p><hr /><p>You could add links to my websites, but I actually do not like to talk too much about my "achievements".</p><p><strong>German/English Website and Facebook: Website:</strong> <a target="_blank" href="http://www.instabile-halswirbelsaeule.de">www.instabile-halswirbelsaeule.de</a> Facebook: <a target="_blank" href="https://www.facebook.com/instabilehalswirbelsaeule">https://www.facebook.com/instabilehalswirbelsaeule</a> German Blog <a target="_blank" href="http://www.holy-shit-i-am-sick.de Facebook">http://www.holy-shit-i-am-sick.de Facebook</a>: <a target="_blank" href="https://www.facebook.com/1000GeschichtenchronischkrankerMenschen">https://www.facebook.com/1000GeschichtenchronischkrankerMenschen</a></p><p><strong>My personal story in two books</strong></p><p>(German): <a target="_blank" href="http://www.amazon.de/Wenn-Kopf-zur-Last-wird/dp/3734511410/ref=pd_ecc_rvi_1">My way to diagnosis</a>:</p><p><a target="_blank" href="https://www.amazon.de/Wenn-Kopf-Last-wird-überbewegliches/dp/3743954036/ref=sr_1_2?ie=UTF8&qid=1509014949&sr=8-2&keywords=wenn+der+kopf+zur+last+wird">My life with ED</a>S:</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>EDS,MCA, POTS, Collect Them All: German Socialized Medicine, Medical Marijuana, UBER WE HAVE AN IDEA FOR YOU: Chronic Illness Serial Podcast</itunes:subtitle><itunes:summary>I have made choice of not doing just one or even two posts of a diagnosis (you might remember my interview). The reason is that each of us has a different experience with our disorders and I want to show how wildly different stories can be even when they live under the same diagnosis. OK, off my soapbox I have you really enjoy hearing from Karina and hearing about her journey. You will learn so much from pain medication guilt, medical, marijuana, the naivete before chronic illness, and I learned so much about socialized medicine in Germany and the differences with the ACA. | |
| What is your disorder? * | |
| Ehlers-Danlos Syndrome and comorbid conditions (spinal instabilities, mast cell activation, small fiber neuropathy, dysautonomia and others) - 15 diagnoses by now. | |
| At what age did your disorder become a daily issue? * | |
| 24 | |
| Who were you before your illness became debilitating? * | |
| I would say that I was really naive. I thought nothing could ever hurt me. In 2009, I just started my career as a lab technician, moved into my first apartment, and everything was just fine. I was self-confident and a perfectionist. Moreover, I had a 5-year-plan that included marrying, building a house, working for doctors without borders, adopting a child, and many more. Playing volleyball and other sports were my life - I was super competitive and ambitious, which I still am, but in a different way, and other areas. | |
| What would you do if you were not dealing with your invisible illness? * | |
| There is a lot I would do if I were not sick! For example, traveling around the world (parts of the world are just not accessible for me anymore), dancing, bungee jumping, weird sports I cannot do anymore, building up a lab in Africa, learning how to sail, hiking the pacific crest trail. Anyway, I would want to have the knowledge that I gained due to my illness with, because only now can I really appreciate all those things I had when I was healthy. | |
| What would you like people to know about your daily life? * | |
| …that I try very hard to be the best friend I can be. …that I feel horrible every time I have to say the words," I am sorry, I have to cancel." …that there is no such thing as a good day. There are better or worse days, but no more good ones. …that every day brings new challenges. …that even the smallest thing, such as taking a shower, can cause major symptoms. …that even though I might not be working a full-time job, I still am not sitting on my couch and stare holes into the wall. And if I do, it is not my choice, and absolutely not because I am lazy, but because it is the only way to get through the day. …that having a doctors appointment is pretty dramatic for me sometimes, because I made so many bad experiences, but still need my doctors. …that work that is not paid is still valuable and important. …that I do my best to achieve my goals, but the goals are sometimes maybe as simple as getting out of bed in the morning. …that I do not need any special treatment. I do not expect anything, and I do not set rules how I want to be treated. I do not feel offended by things like "I pray for you" or "Get better soon“. While I am not very religious, and most likely will not get better, I appreciate any good wish and thought. | |
| What would make living and moving in the world easier for you? * | |
| People that are more tolerant. Let me tell you a story. A couple of weeks ago, I went grocery shopping with my husband on a Sunday, like we always do. I cannot go by myself, because we do not own a car, so someone has to carry 30 pounds of groceries home. Going shopping is kind of a huge activity for me. By the time we finished, we had to take the metro home. It is only two stops, so I managed to stand during the whole time. I was wearing my neck brace, and that was the only obvious sign of my disability. A man standing next to me looked confused to me a couple of times until he said, "Hey, that must hurt, do you want me to ask someone here to get up?" He was pointing at the disability seats that were already taken. I was super surprised because nobody ever asked me anything like this in San Francisco. Usually, if I sit on those seats reserved for people with disabilities, people tend to give me bad looks when I do not get up for an old lady. But this time someone else asked me if I needed to sit down. If all people were like this guy, my life would be a lot easier. I was moved to tears by his gesture. | |
| Do you have any life hacks? * | |
| What I love most is my Aspen neck brace and my memory foam seat cushion. I am not going anywhere without those two. The latter one literally saves my ass. Other than that, I am sleeping with a u-shaped pregnancy pillow that supports all my joints. I like shoes that go over my ankles, to give me additional support when walking. Pants that sit tight help with proprioception, and compression stockings work well for dysautonomia and stability too. I use other braces for almost all of my joints; and a backpack with support around my hips, so not all the weight is on my back. | |
| What kind of support do you get from family or friends? * | |
| Luckily, I only lost a couple of important people. The majority is still with me. Some friends could not really deal with the "new“ me, and one relationship did not survive my changes. Becoming a butterfly that grows out of a rope is a huge transition, and some loved ones could take it better than others. To be fair, I was not easy to handle - especially in the beginning (2010). I had no idea who I was anymore, so how could other people know? My family and friends support me physically, for example, drive me to appointments since I cannot drive by myself; they pick me up if we want to have a coffee together, and they also support me mentally if I had a bad appointment or just a very shitty day. | |
| Would you care to relate the details of what happened when someone didn't believe you were disabled? | |
| That is pretty typical. People tend to judge quickly based on appearance. Not sure why, because every one of us knows how to smile even if we do not feel like smiling. It is not so hard to see below this surface of "I am ok," and to recognize how the person really feels. But that would take some effort, and many people just do not want to get to know the real "me". It affected me in a very negative way. Sometimes I would not go outside even though I had a better day because I worried that I would meet people that could assume that I am healthy. I felt like I was proving them right if I left my house and enjoyed the day. At some point, I understood that this was just stupid. People assume whatever they want, and they will judge you anyway. It is a waste of your good moments if you do not go out and live your life when you can. | |
| How has your invisible illness affected your relationships? * | |
| I do not think that the invisibility of my condition in particular affected my relationship. My husband is very supportive and my ex broke up with me because we both could not handle my disease during that time. I do not think that anyone close to me has a problem with the invisibility of my illnesses. They know exactly how I feel as soon as they look into my eyes. It is mainly people I do not know that act weird around me. But of course being chronically ill affects any relationship. There are always things to consider, even for the smallest activity, and there is always a problem. | |
| Is there anything you are afraid to tell even the people closest to you? * | |
| I am somehow afraid to tell them that I feel very alone sometimes. They would feel as if I just told them they did not try hard enough to be there for me, but that is not it. The problem is more that, even though everyone is there for me, some days just suck so much that I just feel completely alone on this planet. Also, I am scared like hell to be all alone at some point of my illness, because I really do not know how to survive without the physical support of my family and friends. Another thing I should not even think, and of course not say, is that I am jealous of some of their perfect lives. Of course, they deserve to be happy, and I hate myself for feeling this way occasionally. But sometimes it just hurts to see how my friends can have families and normal lives. | |
| What is your best coping mechanism? * | |
| Writing! Whether I only write for myself, for example in a diary, or in public, I write every minute I feel ok. It became my passion and my sense in life. | |
| What are you the most fearful of and hopeful for in the future? * | |
| Fearful: I fear the moment when my disease will get to a point where I am unable to advocate for myself. Because without this ability, rare disease patients are completely lost. Hopeful: I think the EDS community is doing a great job in raising awareness, and this will hopefully lead to a broader understanding of our condition, more diagnosed patients and then more doctors to treat us. | |
| What is your favorite swear word? | |
| Oh gosh, many. :) I love to swear. Not so much in English, since it is not my first language. My favorite English words: Holy Shit, Fuck it, Holy Fuck. German: Verfickte Scheiße. I am a horrible person. | |
| You could add links to my websites, but I actually do not like to talk too much about my "achievements". | |
| German/English Website and Facebook: Website: www.instabile-halswirbelsaeule.de Facebook: https://www.facebook.com/instabilehalswirbelsaeule German Blog http://www.holy-shit-i-am-sick.de Facebook: https://www.facebook.com/1000GeschichtenchronischkrankerMenschen | |
| My personal story in two books | |
| (German): My way to diagnosis: | |
| My life with EDS:</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:01:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59f0d261edaed819b5b570d4/1510708151433/1500w/IMG_4773.JPG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59f0d3076957dabe07e8702d/1508955073985/KarinaType3.mp3" length="86600016" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59f0d3076957dabe07e8702d/1508955073985/KarinaType3.mp3" length="86600016" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Who Knew You Could Live Without Kidneys? {Chronic Illness Podcast}</title><category>Interview</category><dc:creator>Kyros Starr</dc:creator><pubDate>Mon, 23 Oct 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/10/18/prostate-cancer-to-no-kidneys-chronic-illness-podcast-invisible-illness-blog</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59e7e60db07869e5a2b576d8</guid><description>Click Title To Listen to Invisible Illness Podcast Episode | |
| Hemodialysis | |
| ACA | |
| Fluids in foods | |
| Hyperphosphatemia | |
| Flavor Boosting Phosphates in food | |
| Artificial Kidney | |
| More about Artificial Kidneys | |
| Kidney transplant rejection</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>Denial? Or I’m just a tough jackass that won’t just die<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Robert Fukushima Bad Ass With No Kidneys</figcaption> | |
| </figure> | |
| <hr /><p><strong><a target="_blank" href="https://www.medicinenet.com/dialysis/article.htm">Hemodialysis</a> </strong></p><p><strong><a target="_blank" href="https://en.wikipedia.org/wiki/Patient_Protection_and_Affordable_Care_Act">ACA</a> </strong></p><p><strong><a target="_blank" href="https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/food-that-counts-as-fluid-on-the-kidney-diet/e/6965">Fluids in foods</a> </strong></p><p><strong><a target="_blank" href="https://en.wikipedia.org/wiki/Hyperphosphatemia">Hyperphosphatemia</a> </strong></p><p><strong><a target="_blank" href="https://www.webmd.com/news/breaking-news/food-additives/20150723/phosphates-food">Flavor Boosting Phosphates in food</a> </strong></p><p><strong><a target="_blank" href="https://www.meddeviceonline.com/doc/world-s-first-implantable-artificial-kidney-could-enter-human-trials-by-0001">Artificial Kidney</a> </strong></p><p><strong><a target="_blank" href="https://pharm.ucsf.edu/kidney">More about Artificial Kidneys</a></strong></p><p><strong><a target="_blank" href="https://www.kidney.org/transplantation/transaction/TC/summer09/TCsm09_TransplantFails">Kidney transplant rejection</a></strong></p><p> </p> | |
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| <hr /><hr /><p><strong>Robert Fukushima</strong></p><p><strong>Age</strong>: 56</p><p><strong>Gender</strong>: Male</p><p><strong>Disability</strong>: <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521">Kidney failure</a>, <a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/basics/definition/con-20025517">avascular necrosis</a> of the hip</p><p><strong>Age disorder became a daily issue</strong>: 24</p><p><strong>Is there anything you would do if you were not sick? </strong>Travel, eat more, drink more, return to work, garden</p><p><strong>What would make living and moving in the world easier for you?</strong> Kidney transplant would be the biggest thing</p><p><strong>Disability Lifehacks?</strong> My biggest thing is to remind myself that I am disabled even if I'm not feeling so. Things take longer, something's can't be the same</p><p><strong>Support from family or friends?</strong> I have exceptional family and friend support.</p><p><strong>Do you find that people do not believe you are sick because of your appearance?</strong> Yes</p><p><strong>How has this affected you positive or negative?</strong> I am one of those people who doesn't care, for the most part, what others think of me.</p><p><strong>What are you afraid to tell even the people closest to you?</strong> I'm actually a fairly open book, even when sober.</p><p><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong> No</p><p><strong>Best coping mechanism? </strong>Denial? Or I'm just a tough jackass that won't just die</p><p><strong>What are you the most fearful of and what are you the most hopeful for in the future? </strong>The effects of President Trump's effects on society (fear). My biggest hope is to get a kidney and I'll at least be close to feeling well.</p><p><strong>Favorite swear word?</strong> I'm not sure I do swear</p><p><a href="http://invisiblenotbroken.com/home/2017/10/18/prostate-cancer-to-no-kidneys-chronic-illness-podcast-invisible-illness-blog">Permalink</a><p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Who Knew You Could Live Without Kidneys? Not Us Until This Week!</itunes:subtitle><itunes:summary>Robert’s Podcast Links | |
| Hemodialysis - https://www.medicinenet.com/dialysis/article.htm | |
| ACA - https://en.wikipedia.org/wiki/Patient_Protection_and_Affordable_Care_Act | |
| Fluids in foods - https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/food-that-counts-as-fluid-on-the-kidney-diet/e/6965 | |
| Hyperphosphatemia - https://en.wikipedia.org/wiki/Hyperphosphatemia | |
| Flavor Boosting Phosphates in food - https://www.webmd.com/news/breaking-news/food-additives/20150723/phosphates-food | |
| Artificial Kidney - https://pharm.ucsf.edu/kidney & https://www.meddeviceonline.com/doc/world-s-first-implantable-artificial-kidney-could-enter-human-trials-by-0001 | |
| Kidney transplant rejection - https://www.kidney.org/transplantation/transaction/TC/summer09/TCsm09_TransplantFails | |
| </itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:02:30</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59e7e60db07869e5a2b576d8/1508809152251/1500w/Robert-kidney-invisible-illness-podcast.PNG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59e7e61780bd5ec87535c0ea/1508370133373/Robert.mp3" length="93804169" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59e7e61780bd5ec87535c0ea/1508370133373/Robert.mp3" length="93804169" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Diabetes The Ultimate in Self Regulation : How To Really Screw Up A College Student's First Year: Chronic Illness is the Baby that Never Grows Up</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 16 Oct 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/10/13/diabetes-the-ultimate-in-self-regulation-how-to-really-screw-up-a-college-students-first-year-chronic-illness-is-the-baby-that-never-grows-up</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59e151e19f8dce63978377c3</guid><description>Click Title For Our Diabetes Episode Of Invisible Illness Podcast | |
| Diabetes Type 1 Neuropathy Diabetes Association Insulin Pump Insulin | |
| Artificial Pancreas</description><content:encoded><![CDATA[<img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561d1f318d545aa68c16/1508039443238/diabetes-chronic-illness-podcast-invisible-illness.JPG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="How is Type 1 Diabetes Like have A Newborn? Find out on this week's episode " data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561d1f318d545aa68c16/1508039443238/diabetes-chronic-illness-podcast-invisible-illness.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561d2278e7ca5b9de8dc/1508039485088/diabetes-podcast-chronic-illness-blog.JPG" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" alt="Diabetes: How To Screw Up A College Freshman's First Few Weeks Of College: Invisible Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561d2278e7ca5b9de8dc/1508039485088/diabetes-podcast-chronic-illness-blog.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561dd2b857b082459f99/1508039511171/invisible-illness-podcast.JPG" data-image-dimensions="650x487" data-image-focal-point="0.5,0.5" alt="Invisible Not Broken and Invisible Illness Podcast" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59e1561cbe42d624619ddccd/59e1561dd2b857b082459f99/1508039511171/invisible-illness-podcast.JPG?format=1000w" /><br> | |
| <a href="#" class="previous"></a> | |
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| <h2><a target="_blank" href="http://www.diabetes.org/diabetes-basics/type-1/">Diabetes Type 1</a></h2><h2><a target="_blank" href="https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/basics/definition/con-20033336">Neuropathy </a></h2><h2><a target="_blank" href="http://www.diabetes.org/?referrer=https://www.google.com/">Diabetes Association</a></h2><h2><a target="_blank" href="https://www.webmd.com/diabetes/insulin-pump">Insulin Pump</a></h2><h2><a target="_blank" href="https://www.endocrineweb.com/conditions/type-1-diabetes/what-insulin">Insulin</a></h2><h2><a target="_blank" href="https://www.cnbc.com/2016/03/30/artifical-pancreas-could-be-ready-in-2017-for-type-1-diabetics.html">Artificial Pancreas</a></h2><hr /><h2>Thank you so much for joining us this week. Please share this episode with a friend you think would enjoy and don't forget to subscribe and leave kind words for us.</h2><h2>Until next week...</h2><h2 class="text-align-center">Be kind. Be gentle. Be a badass.</h2><hr /><p> </p><p> </p><p> </p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Type 1 Diabetes: How To Really Screw Up A College Freshman's First Few Weeks Of School</itunes:subtitle><itunes:summary>This week on Invisible Not Broken, a chronic illness podcast, mostly about invisible illness, Monica Michelle interviews her cousin who has Type 1 Diabetes. | |
| Listen for: | |
| How having diabetes (or chronic illness) is like having a newborn. | |
| What it's like to be diagnosed with Type 1 Diabetes two weeks into college. | |
| Some diabetes life hacks. | |
| Did you know insulin pumps aren't waterproof? I didn't | |
| What to say and what not to ask someone who has a chronic illness. | |
| Listen for the loud popping sound, that would be Monica Michelle's hip dislocating (Yay Ehlers Danlos). | |
| Remember while we talk about medical issues none of us are doctors. If you want to try something talk to your doctor first. | |
| Tune in next week for Kyros Starrs interview with a man who has no kidneys! Thank you so much for joining Invisible Not Broken, an invisible illness podcast. | |
| Please share us with a friend, press subscribe and say something embarrassingly nice in our review section. | |
| Until next week: | |
| Be kind. Be gentle. Be a badass | |
| www.invisiblenotbroken.com | |
| Neuropathy | |
| Diabetes Association | |
| Insulin Pump | |
| Insulin | |
| Artificial Pancreas</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:03:30</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59e151e19f8dce63978377c3/1509653164111/1500w/diabetes-chronic-illness-podcast-invisible-illness.JPG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59e1527cb7411c3c1f2cca26/1507939197406/Eric-Diabetes-Type-1.mp3" length="90237514" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59e1527cb7411c3c1f2cca26/1507939197406/Eric-Diabetes-Type-1.mp3" length="90237514" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Sex and Disability: Everything You Want To Know About Dating and Chronic Illness But Were Afraid To Ask</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 09 Oct 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/bear-and-a-vanilla-housewife-talk-about-sex-dating-relationships-with-chronic-illness-food-allergy-ehlers-danlos-fibromyalgia</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59d6d04a4c0dbfb69d63969f</guid><description>Click Title to Listen To Our Invisible Disabilities Podcast | |
| Sex and Disability: Everything You Want To Know About Dating and Chronic | |
| Illness You Wanted To Know But Were Afraid To Ask. Invisible Not Broken an | |
| invisible illness podcast. | |
| Today a bear and a vanilla suburban housewife talk sex and relationships | |
| with chronic illness. | |
| I have Ehlers Danlos, MCA, POTS, and Fibromyalgia here my interview here | |
| Kyros had food allergies and Morton's Neuroma listen here</description><content:encoded><![CDATA[<h1 class="text-align-center">Please share our podcast and feel free to grab any of our images to use on your social media posts!</h1> | |
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| <img class="thumb-image" alt="A Sick Bear and AN Ehlers Danlos Vanilla Housewife Talk Chronic Pain and Sex in Our Chronic Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd1e64b05fdde9d4347a/1507253709103/sex-chronic-illness-podcast.png" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6dd1e64b05fdde9d4347a" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd1e64b05fdde9d4347a/1507253709103/sex-chronic-illness-podcast.png?format=1000w" /><br> | |
| <img class="thumb-image" alt="Dating and Relationships When In Chronic Pain: Invisible Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd258dd0418b73581678/1507253640313/sex-disability-podcast.jpeg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6dd258dd0418b73581678" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd258dd0418b73581678/1507253640313/sex-disability-podcast.jpeg?format=1000w" /><br> | |
| <img class="thumb-image" alt="Sex and chronic pain invisible illness and dating" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd25a803bbf56b94cef2/1507253595450/sex-invisible-illness-podcast.jpeg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6dd25a803bbf56b94cef2" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6dd1dccc5c54d14c2e045/59d6dd25a803bbf56b94cef2/1507253595450/sex-invisible-illness-podcast.jpeg?format=1000w" /><br> | |
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| <img class="thumb-image" alt="A bear and a suburban housewife talk sex and relationships with chronic illness" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d910f7e0ab75856b715f/1507253112912/dating-disability-podcast.png" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6d910f7e0ab75856b715f" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d910f7e0ab75856b715f/1507253112912/dating-disability-podcast.png?format=1000w" /><br> | |
| <img class="thumb-image" alt="Sex, Relationships, & Dating With Chronic Pain" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d9102994cab5e1028fa2/1507253132469/sex-chronic-illness-podcast.png" data-image-dimensions="432x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6d9102994cab5e1028fa2" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d9102994cab5e1028fa2/1507253132469/sex-chronic-illness-podcast.png?format=1000w" /><br> | |
| <img class="thumb-image" alt="Sex and Chronic Pain and Invisible Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d917e3df282e4e6c60cb/1507253145115/sex-disability-podcast.jpeg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6d917e3df282e4e6c60cb" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d917e3df282e4e6c60cb/1507253145115/sex-disability-podcast.jpeg?format=1000w" /><br> | |
| <img class="thumb-image" alt="Dating and Chronic Ilness An Invisible Illness Podcast" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d918f6576e961db1b5b7/1507253160814/sex-invisible-illness-podcast.jpeg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59d6d918f6576e961db1b5b7" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/59d6d910edaed8d460e90c21/59d6d918f6576e961db1b5b7/1507253160814/sex-invisible-illness-podcast.jpeg?format=1000w" /><br> | |
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| <a href="#" class="next"></a>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Sex and Disability: Everything You Want To Know About Dating and Chronic Illness You Wanted To Know But Were Afraid To Ask: Chronic Illness Podcast</itunes:subtitle><itunes:summary>So Kyros and I decided to bare it all or in Kyros' case "bear" it all. Today's panel discussion is how at least we handle sex, dating, and relationships with our chronic conditions (mine Ehlers Danlos (joints dislocate with no warning), POTS (passing out with heart irregularities, and Fibromyalgia (widespread muscle pain) Kyros (food allergies, IBS, and Neuroma). You will get two perspective and some solutions that have worked or just listen to see how long Kyros and I can talk without cracking up like 7th graders. | |
| Sex and Disability: Everything You Want To Know About Dating and Chronic Illness You Wanted To Know But Were Afraid To Ask. Invisible Not Broken an invisible illness podcast. | |
| Today a bear and a vanilla suburban housewife talk sex and relationships with chronic illness. | |
| I have Ehlers Danlos, MCA, POTS, and Fibromyalgia here my interview here | |
| Kyros had food allergies and Morton's Neuroma listen here | |
| Join us next week and until then | |
| Be kind. Be gentle. Be a badass</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>59:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59d6d04a4c0dbfb69d63969f/1509653228364/1500w/dating-disability-podcast.png"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59d83e1bbebafb24a354bdfd/1507344077293/Everything+you+wanted+to+know+about+sex+and+disability+but+were+afraid+to+ask.mp3" length="84495382" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59d83e1bbebafb24a354bdfd/1507344077293/Everything+you+wanted+to+know+about+sex+and+disability+but+were+afraid+to+ask.mp3" length="84495382" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>When In Sickness & In Health Gets Real, Denial Isn't Just a River in Egypt, When Are We Getting Self Driving Cars Again?</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 02 Oct 2017 13:00:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/9/23/stargardts-blindness-caregiving-invisible-illness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59c733ace5dd5b140a573562</guid><description>Click title to listen to podcast</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>Be like water always finding a path<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Colleen White</figcaption> | |
| </figure> | |
| <p>Thank you for <g data-gr-id="395" id="395" class="gr_ gr_395 gr-alert gr_gramm gr_inline_cards gr_run_anim Grammar only-ins replaceWithoutSep">listening</g> this week, it's a special one for me. Colleen and her family have been dear friends and so supportive during my disability journey. You might be able to tell I adore her. Colleen is caring for her husband who has <a href="https://nei.nih.gov/health/stargardt/star_facts" data-cke-saved-href="https://nei.nih.gov/health/stargardt/star_facts" target="_blank">Stargardt's Disease</a>. </p><p id="yui_3_17_2_1_1506820420469_43557">Listen for the ways Colleen knows if she hasn't taken time for herself, How denial isn't always the worst thing when being chronically ill or being a caregiver, and so much more. </p><p>Please be sure to share the podcast with your community.</p><p>Until Next Week</p><p id="yui_3_17_2_1_1506820420469_44715"><strong>Be kind. Be gentle. Be a badass.</strong></p><p><strong>Links to things in the episode</strong><br></p><p id="yui_3_17_2_1_1506820420469_47957"><a href="http://www.ncsl.org/research/transportation/autonomous-vehicles-self-driving-vehicles-enacted-legislation.aspx" data-cke-saved-href="http://www.ncsl.org/research/transportation/autonomous-vehicles-self-driving-vehicles-enacted-legislation.aspx" target="_blank"><strong></strong> Self-driving cars </a> </p><p id="yui_3_17_2_1_1506820420469_48619"><a href="http://www.blindness.org/eye-conditions/stargardt-disease" data-cke-saved-href="http://www.blindness.org/eye-conditions/stargardt-disease" target="_blank">Foundation Fighting Blindness</a></p><p id="yui_3_17_2_1_1506820420469_49291"><a href="https://www.microsoft.com/en-us/surface/devices/surface-studio/overview" data-cke-saved-href="https://www.microsoft.com/en-us/surface/devices/surface-studio/overview" target="_blank">Microsoft Touchscreen Desktop</a></p><p id="yui_3_17_2_1_1506820420469_49963"><a href="https://www.lyft.com/" data-cke-saved-href="https://www.lyft.com/" target="_blank">Lyft</a></p><p id="yui_3_17_2_1_1506820420469_50666"><a href="https://www.uber.com/" data-cke-saved-href="https://www.uber.com/" target="_blank">Uber</a></p><p id="yui_3_17_2_1_1506820420469_51330"><a href="https://www.tesla.com/autopilot" data-cke-saved-href="https://www.tesla.com/autopilot" target="_blank">Tesla</a></p><p id="yui_3_17_2_1_1506820420469_52004"><a href="https://www.subaru.com/vehicles/outback/index.html?GOOGLE700000001067987Outback_Shopping71700000010401454Outback%20Shopping587000004696097322017%20Subaru%20Outback%20Pricingp1408124502143700014081245021&s_kwcid=2017%20subaru%20outback%20pricing&s_kwcid=2017%20Subaru%20Outback%20Pricing&s_kwid=keyword&ds_kids=p14081245021&ds_kid=43700014081245021&utm_source=paid-search&utm_medium=google_cpc&gclid=Cj0KCQjwgb3OBRDNARIsAOyZbxBkZ48_sjgCF3VSbP7xDcbRpB9A2Il9a-NP99_4K6WNvVqv3mT2Q1caApb4EALw_wcB&gclsrc=aw.ds" data-cke-saved-href="https://www.subaru.com/vehicles/outback/index.html?GOOGLE700000001067987Outback_Shopping71700000010401454Outback%20Shopping587000004696097322017%20Subaru%20Outback%20Pricingp1408124502143700014081245021&s_kwcid=2017%20subaru%20outback%20pricing&s_kwcid=2017%20Subaru%20Outback%20Pricing&s_kwid=keyword&ds_kids=p14081245021&ds_kid=43700014081245021&utm_source=paid-search&utm_medium=google_cpc&gclid=Cj0KCQjwgb3OBRDNARIsAOyZbxBkZ48_sjgCF3VSbP7xDcbRpB9A2Il9a-NP99_4K6WNvVqv3mT2Q1caApb4EALw_wcB&gclsrc=aw.ds" target="_blank">Outback (fits wheelchairs really well!)</a></p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Stargardt: When In Sickness & In Health Gets Real, Denial Isn't Just a River in Egypt, When Are We Getting Self Driving Cars Again? Chronic Illness Podcast</itunes:subtitle><itunes:summary>Thank you for listening this week, it's a special one for me. Colleen and her family have been dear friends and so supportive during my disability journey. You might be able to tell I adore her. Colleen is caring for her husband who has Stargardt's Disease. | |
| Listen for the ways Colleen knows if she hasn't taken time for herself, How denial isn't always the worst thing when being chronically ill or being a caregiver, and so much more. | |
| Please be sure to share the podcast with your community. | |
| Until Next Week | |
| Be kind. Be gentle. Be a badass. | |
| Links to things in the episode | |
| Self-driving cars | |
| Foundation Fighting Blindness | |
| Microsoft Touchscreen Desktop | |
| Lyft | |
| Uber | |
| Tesla | |
| Outback (fits wheelchairs really well!) | |
| </itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>55:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59c733ace5dd5b140a573562/1509653801005/1500w/File_005.png"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59d061abedaed82d1194b8e1/1506828863996/colleen+stargarts.mp3" length="78289315" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59d061abedaed82d1194b8e1/1506828863996/colleen+stargarts.mp3" length="78289315" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Caregiving For An Adult Brother With Mental Illness Who Lives Across the Country</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 25 Sep 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/9/24/caregiving-ocd-depression-invisible-illness-mentalillness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59c841b0017db213541f57b4</guid><description>Click on Title to Listen A Special Podcast Epispode Of A Caretaker for | |
| Someone With Invisible Illness | |
| Links to services mentioned in the podcast | |
| Mom's Meals | |
| Blue Apron | |
| Kitten 911 | |
| Girl Power Now Productions | |
| Compassion Fatigue | |
| Katie's Pet Sitting Business Ray of Sunshine Pet Care | |
| Kitten 911 Future Pet Reality Show</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>It was all about me trying to project this image. To whom? No idea, myself I guess. Like anyone was looking.<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Katie</figcaption> | |
| </figure> | |
| <hr /><p class="text-align-center">Don't forget to share<a target="_blank" href="http://invisiblenotbroken.com/"> Invisible Not Broken</a> with a friend or a caregiver you know.</p><p class="text-align-center">Until next week </p><p class="text-align-center"><strong>Be kind. Be gentle, Be a badass.</strong></p><hr /><p>Thank you for joining us for a very special interview with one of my favorite people. Katie has been a long time friend and my supplier in cute kittens. She is running multiple businesses while volunteering time to care for sick kittens and she is also caring for her brother who lives across the country. Please take a listen and learn about the upside of living in a small town, how Katie helped her brother gain some more independence, sometimes money needs to be thrown at an issue, how great telecommuting can be when you are a caregiver, and one of my favorite parts of our interview hearing how she found the blessings in the face of a massive oncoming storm. Katie is a true badass who has dedicated her entire being to caretaking take a minute and see her page <a target="_blank" href="https://www.gpnproductions.com/copy-of-erock-the-digg-its">Kitten 911</a>.</p><hr /><h3 class="text-align-center"><strong>Katie's Caretaker Questionnaire</strong></h3><hr /><p>Name * Katie Carney</p><p>Age * 50</p><p><strong>What is your person's diagnosis?</strong> *</p><p>mental illness - <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/depression/home/ovc-20321449">Depression</a> & <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/obsessive-compulsive-disorder/home/ovc-20245947">OCD</a></p><p><strong>When did it become a significant issue in your life?</strong> *</p><p>Always, more after parents died</p><p><strong>What does a ‘normal’ day look like? *</strong><br />Work, lots of email & driving, think about issues revolving around caretaking brother</p><p><strong>What could ‘healthy’ world do to make your life easier?</strong> *</p><p>Employers could recognize mental illness - and the need to care for someone suffering with it - the same as needing to care for someone physically ill</p><p><strong>How has this changed you? *</strong><br />Made me 'grow up' and make sure my own shit is together!</p><p><strong>How has this affected your relationships?</strong> *<br />It definitely<strong> </strong> pulls focus... but friends, bosses & boyfriends have been (luckily) great</p><p><strong>Any life hacks?</strong></p><p>Preparation is key; NO guilt - order meals, pay for housecleaning, etc. for you AND/OR the caretake-ee!! You do NOT have to do it all, or all alone!!</p><p><strong>What do you wish someone would ask you?</strong> *<br />Would you like a massage/foot rub/day off? How can I take care of YOU??</p><p><strong>What do you hope they won't ask?</strong> *<br />What's his diagnosis? Has he always been like this? Will he ever get better?</p><p><strong>What frightens you?</strong> *</p><p>Financial Ruin</p><p><strong>What or who would you be if you weren't taking care of someone?</strong> *</p><p>I can't imagine NOT caretaking ... but most likely I would travel a LOT more. Life would be less structured.</p><p><strong>Favorite swear word?</strong><br />Fuck ton (as in 'That's a fuck ton of work.'). Alternately - asshat. Best insult ever!</p><hr /><h3 class="text-align-center"><strong>Links to services mentioned in the podcast</strong></h3><p class="text-align-center"><a target="_blank" href="http://www.momsmeals.com/"><strong>Mom's Meals</strong></a></p><p class="text-align-center"><a target="_blank" href="https://www.blueapron.com/">Blue Apron</a></p><p class="text-align-center"><a target="_blank" href="https://www.gpnproductions.com/copy-of-erock-the-digg-its">Kitten 911</a></p><p class="text-align-center"><a target="_blank" href="https://www.gpnproductions.com/katie-carney">Girl Power Now Productions</a></p><p class="text-align-center"><a target="_blank" href="http://compassionfatigue.org">Compassion Fatigue</a></p><p class="text-align-center">Katie's Pet Sitting Business <a target="_blank" href="https://www.rayofsunshinepetcare.com/">Ray of Sunshine Pet Care</a></p><p class="text-align-center"><a target="_blank" href="https://www.gpnproductions.com/">Kitten 911</a> Future Pet Reality Show</p>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Caregiving For A Brother With Depression and OCD Who Lives Across The Country</itunes:subtitle><itunes:summary>Thank you for joining us for a very special interview with one of my favorite people. Katie has been a long time friend and my supplier in cute kittens. She is running multiple businesses while volunteering time to care for sick kittens and she is also caring for her brother who lives across the country. Please take a listen and learn about the upside of living in a small town, how Katie helped her brother gain some more independence, sometimes money needs to be thrown at an issue, how great telecommuting can be when you are a caregiver, and one of my favorite parts of our interview hearing how she found the blessings in the face of a massive oncoming storm. Katie is a true badass who has dedicated her entire being to caretaking take a minute and see her page Kitten 911. | |
| Katie's Caretaker Questionnaire | |
| Name * Katie Carney | |
| Age * 50 | |
| What is your person's diagnosis? * | |
| mental illness - Depression & OCD | |
| When did it become a significant issue in your life? * | |
| Always, more after parents died | |
| What does a ‘normal’ day look like? * | |
| Work, lots of email & driving, think about issues revolving around caretaking brother | |
| What could ‘healthy’ world do to make your life easier? * | |
| Employers could recognize mental illness - and the need to care for someone suffering with it - the same as needing to care for someone physically ill | |
| How has this changed you? * | |
| Made me 'grow up' and make sure my own shit is together! | |
| How has this affected your relationships? * | |
| It definitely pulls focus... but friends, bosses & boyfriends have been (luckily) great | |
| Any life hacks? | |
| Preparation is key; NO guilt - order meals, pay for housecleaning, etc. for you AND/OR the caretake-ee!! You do NOT have to do it all, or all alone!! | |
| What do you wish someone would ask you? * | |
| Would you like a massage/foot rub/day off? How can I take care of YOU?? | |
| What do you hope they won't ask? * | |
| What's his diagnosis? Has he always been like this? Will he ever get better? | |
| What frightens you? * | |
| Financial Ruin | |
| What or who would you be if you weren't taking care of someone? * | |
| I can't imagine NOT caretaking ... but most likely I would travel a LOT more. Life would be less structured. | |
| Favorite swear word? | |
| Fuck ton (as in 'That's a fuck ton of work.'). Alternately - asshat. Best insult ever! | |
| Links to services mentioned in the podcast | |
| Mom's Meals | |
| Blue Apron | |
| Kitten 911 | |
| Girl Power Now Productions | |
| </itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>56:50</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59c841b0017db213541f57b4/1508642605009/1500w/kitten-dog-cuddle-how-to-take-care-of-someone-with-mental-illness-invisible-illness.JPG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59c855d9f43b55ff86c5fb2a/1508638012722/Katie.mp3" length="81395170" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59c855d9f43b55ff86c5fb2a/1508638012722/Katie.mp3" length="81395170" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Ehlers Danlos, Fibromyalgia, POTS, & MCA Collect Them All {Invisible Illness Podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 18 Sep 2017 14:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/7/26/ehlers-danlos-fibromyalgia-pots-mca-collect-them-all-invisible-illness-podcast</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:597929bbe6f2e12643280501</guid><description>Click Title To Listen To Invisible Illness Podcast | |
| This is my interview. It is candid and though I am writing this before | |
| recording I am guessing littered with swear words. If I have to live like | |
| this, be inspiring, be funny, and do all of the other things I need to I | |
| get to lean on my favorite four letter word. If this is offensive to you | |
| please know that being in constant pain every day is offensive to me. | |
| Ehlers Danlos | |
| POTS | |
| Fibromyalgia | |
| Thank you so much for listening. Please share with a friend and don't | |
| forget to leave a kind if not glowing review on iTunes. | |
| Until next time | |
| Be Kind. Be Gentle. Be a Bad Ass.</description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>What you do is not who you are.<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Monica MIchelle</figcaption> | |
| </figure><h1 class="text-align-center">Invisible Illness: Which one do I qualify as sick? Also, a little window into my daily world</h1> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f729a37c581c9adbde49a/1505490162683/IMG_0008+2.JPG" data-image-dimensions="650x650" data-image-focal-point="0.5,0.5" alt="Invisible Illness: Do I look sick enough?" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f729a37c581c9adbde49a/1505490162683/IMG_0008+2.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f72a05016e139ecfd0011/1501525052132/IMG_0011.jpg" data-image-dimensions="650x650" data-image-focal-point="0.5,0.5" alt="Invisible Illness: Do I look sick enough?" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f72a05016e139ecfd0011/1501525052132/IMG_0011.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f72acc534a5d6c041a677/1505490242770/IMG_0012.JPG" data-image-dimensions="597x650" data-image-focal-point="0.5,0.5" alt="Invisible Illness: Am I sick now?" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/597f72acc534a5d6c041a677/1505490242770/IMG_0012.JPG?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecc90bade58f8809293/1505492774922/IMG_0915.jpg" data-image-dimensions="650x650" data-image-focal-point="0.5,0.5" alt="Pug and Son" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecc90bade58f8809293/1505492774922/IMG_0915.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecc3e00be2d1aa76689/1505492825122/8F7A3269.jpg" data-image-dimensions="433x650" data-image-focal-point="0.5,0.5" alt="Supergirl Fawn Pug Puppy" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecc3e00be2d1aa76689/1505492825122/8F7A3269.jpg?format=1000w" /><br> | |
| <img data-load="false" data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecd12abd9212d18e80c/1505492883287/shepard-puppy-emotional-supprt.jpg" data-image-dimensions="650x365" data-image-focal-point="0.5,0.5" alt="Sleeping Shepard Puppy" data-click-through-url="" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/597f729a20099e996bd65fb9/59bbfecd12abd9212d18e80c/1505492883287/shepard-puppy-emotional-supprt.jpg?format=1000w" /><br> | |
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| <p>Every time I rattle off my disorders I almost have to count them off on my fingers. Did I forget one? Would it even matter when they all fall under the umbrella of ok no you're not crazy, no cure, and wow that's really a thing? I will leave links at the bottom if you would like to know more about the wonderfully creative ways my body attempts to make itself into modern sculpture.</p><p>This is my interview. It is candid and though I am writing this before recording I am guessing littered with swear words. If I have to live like this, be inspiring, be funny, and do all of the other things I need to I get to lean on my favorite four letter word. If this is offensive to you please know that being in constant pain every day is offensive to me.</p><hr /><h1 class="text-align-center">If You Want To Know More About My Disorders</h1><hr /><p class="text-align-center"><a target="_blank" href="https://www.ehlers-danlos.com/">Ehlers Danlos</a></p><p class="text-align-center"><a target="_blank" href="http://www.dysautonomiainternational.org/page.php?ID=36">POTS</a></p><p class="text-align-center"> <a target="_blank" href="https://connect.mayoclinic.org/discussion/mast-cell-activation/">Mast Cell Activation</a></p><p class="text-align-center"><a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786">Fibromyalgia</a></p><p class="text-align-center">NOT one of my diagnosis but mentioned<a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/dxc-20249662"> Chiari Malformation</a></p><hr /><p>Thank you so much for listening. Please share with a friend and don't forget to leave a kind if not glowing review on<a target="_blank" href="https://itunes.apple.com/us/podcast/invisible-not-broken/id1272292605?mt=2"> ITunes.</a></p><p>Until next time</p><p>Be Kind. Be Gentle. Be a Bad Ass.</p><hr /><h3 class="text-align-center">My Questionairre </h3><hr /><p class="text-align-center">Monica Michelle</p><p>I became symptomatic at 8 and have gone through different levels of disability and surgeries from my teens to going on disability in my late 30’s.</p><p><strong>1. Who were you before your illness became debilitating?</strong></p><p>I think I am lucky. I have been in chronic pain my entire life so I was never completely someone else. I don’t have a memory of being healthy or not in pain. I was a ballerina, a teacher, a jeweler, and a photography studio owner. I am and always will be a storyteller and an artist. I do miss being a photographer. I miss being a part of the community of women in business in the silicon valley. I desperately miss traveling. I miss bike rides. I miss being able to plan. I very much miss hiking and bike riding. I miss walking around <a target="_blank" href="https://www.tripadvisor.com/Tourism-g32873-Pescadero_California-Vacations.html">Pescadero</a> with my kids. I miss being able to take myself to Drs. Appointments or taking the dogs out. That was the person I used to be before this disorder became impossible to hide.</p><p> </p><p><strong>2. Is there anything you would do if you were not sick?</strong></p><p>This is a hard one. I would still be a photographer. I would still be living across the Bay. I don’t know if either of those things would be good for me. If I wasn’t sick I would ride my bike again. I would travel. I would have liked to have become an art teacher for High School. I have binders full of business plans for non-profits I would have loved to have the energy to run.</p><p> </p><p><strong>3. What should other people know about our daily life?</strong></p><p>It changes minute to minute. My heart rate can plummet or race. I can be walking normally and in the next step my hip can dislocate and I won’t be able to walk for a long time. I search for words. I am smarter than I can articulate. Moving in healthy world is X Games for me. In my wheelchair I get dumped on the ground thanks to roots, people stopping suddenly in front of me, and poor city planning with ramps that are only for the truly adventuress.</p><p> </p><p><strong>4. What would make living and moving in the world easier for you?</strong></p><p>If BART would make sure their elevators worked and were clean (whatever is on the ground will end up on my hands). If you see someone in a wheelchair and you are crossing the street don’t cross right in the middle of the ramp. That is where it is flattest. That’s the part I need. If I am struggling please come by, say hello, offer to help. I know this isn’t an everyone thing but it is a me thing. I have trouble balancing everything with my canes or opening doors with my wheelchair.</p><p> </p><p><strong>5. Life hacks?</strong></p><p>My<a target="_blank" href="https://www.apple.com/ipad-pro/?afid=p238%7Css0x4jMI7-dc_mtid_1870765e38482_pcrid_198775582287_&cid=aos-us-kwgo-ipad--slid--product-"> </a><a target="_blank" href="https://www.apple.com/ipad-pro/?afid=p238%7Css0x4jMI7-dc_mtid_1870765e38482_pcrid_198775582287_&cid=aos-us-kwgo-ipad--slid--product-">IPadPro</a> is my world. It is my extra brain. With the <a target="_blank" href="https://www.apple.com/apple-pencil/">pencil,</a> I have an unending source of paper to write my ideas down. I use <a target="_blank" href="https://www.fiverr.com/">fiverr</a> for technical things I don’t know how to do. I use <a target="_blank" href="https://www.taskrabbit.com/?utm_source=ggl_cpc&utm_medium=paid_search&utm_term=task%20rabbit&utm_content=e&utm_campaign=Google_Search_SF_Exact_Brand">TaskRabbit</a> for physical things. My <a target="_blank" href="https://www.amazon.com/Ergobaum-Ergoactives-Ergonomic-Forearm-Crutches/dp/B00LGZ43E2/ref=pd_sbs_121_1?_encoding=UTF8&pd_rd_i=B00LGZ43E2&pd_rd_r=2Z4A3VP5PBSM7NQNWRCJ&pd_rd_w=6Emer&pd_rd_wg=R6F1J&refRID=2Z4A3VP5PBSM7NQNWRCJ&th=1">sticks</a> are my favorite way to get around. Mine have been discontinued but these look pretty good. Send me a review if you like them.</p><p> </p><p><strong>6. Support from family or friends?</strong></p><p>I am beyond privileged and lucky in this department. My mother has helped me with everything. I would like to underline everything. I get worse as the day goes on and she picks up my children from school most days. She takes me to my doctor's appointments. My husband does most housework and cooking. My children have really stepped up helping with chores. I made a shelf on the refrigerator that has microwave meals on it that the kids can get to. I am trying to get better at asking friends to come over.</p><p> </p><p><strong>7. Do you find that people do not believe you are sick because of your appearance?</strong></p><p>I am lucky. I use canes and wheelchair when I am doing badly and it is hard to ignore a bone sticking out of my wrist or the shoulder pushed forward so I don’t often have these moments. I have had a woman rush up and glare at me pointing to the handicap sign and back at me while I was waiting for my daughter to bring my canes. She had the good grace to just walk away.</p><p> </p><p><strong>8. How has this affected your relationships?</strong></p><p>I lost a lot of friendships when I stopped working. I think I scared people who were my age running businesses in the Silicon Valley. No one expects you to retire at 38. I was fortunate that my husband was my best friend for 3 years before we got married so he had already seen a picture of what for better or worse would be. I had people I had been in relationships leave because I was sick so it was probably the only way I would have ever gotten married again was knowing that he had already seen some of the worst and was still all in.</p><p> </p><p><strong>9. What are you afraid to tell even the people closest to you?</strong></p><p>I’m lonely. I’m fucking terrified each time things get bad that this will be the new normal. That I can get so depressed I feel like I'm drowning. I’m scared I am scaring my children. I HATE disappointing people or my animals. It takes almost nothing to push me into guilt or into doing something I really shouldn’t be just because I don’t want to inconvenience them. I will agree with you or change the subject if an argument goes beyond my ability to pay attention or to keep standing or sitting.</p><p> </p><p><strong>10. Does the fact that your disease is invisible change how healthcare professionals treat you?</strong></p><p>Yes, I spent most of my teens being told I was crazy. I was told I was nervous. That I was depressed and overreacting. If a doctor can’t pin something on a disease they will usually pin the fault on the patient.</p><p> </p><p><strong>11. Best coping mechanism?</strong></p><p>My dogs. My cats when they aren’t evil or when they are. Drawing, when I can. Reading when the book is great. The rare days I can bike ride are magic. Scrolling on <a target="_blank" href="https://www.pinterest.com/monicamichelle/">Pinterest</a> needs to be reclassified as transcendental meditation. Talking with my son. Curling up with my daughter. Laying next to my husband watching our next ok just one more episode show.</p><p> </p><p><strong>12. Favorite swear word?</strong></p><p><strong>FUCK.</strong> It is versatile and no word feels the same level of expression and relief when shouted.</p><p> </p><p><strong>13. What are you the most fearful of and what are you the most hopeful for in the future?</strong></p><p>I am fucking terrified I won’t travel out of the country. I am terrified I won’t make my own money again.That my children will blame or resent me. That life will pass me by while I sit in bed waiting for a bone to come home or for my heart to stop its' jazz improv. I am scared I will get worse. That I will have to give more ground.</p><p>Hopeful isn’t much in my wheelhouse tonight. I wish it was. I wish I could say something fabulous and witty that would soften all the dark I wrote but when I began this podcast I decided on complete honesty. I am feeling sad and dark right now. Maybe if I wrote this last week or even tomorrow I would have a bright answer for this but I am writing this now and now I am not feeling it.</p><hr /><h3 class="text-align-center">Links To Some Of My Favorite Things</h3><hr /><p><a target="_blank" href="https://www.quickie-wheelchairs.com/Ultra-Light-Wheelchairs/Ultra-Light-Rigid-Wheelchairs/545c0">Quickie Wheelchair</a> <a target="_blank" href="http://www.dyson.com/vacuum-cleaners/cordless/dyson-v7/dyson-v7-motorhead.aspx">Dyson V7 </a> <a target="_blank" href="https://www.nbc.com/midnight-texas?nbc=1">Midnight Texas </a> </p><p><a target="_blank" href="https://www.leafly.com/news/cannabis-101/what-are-cannabis-topicals">Marijuana Topical </a> <a target="_blank" href="https://www.apple.com/apple-watch-series-3/?afid=p238%7CsCYhDdGHr-dc_mtid_20925qtb42335_pcrid_220924757683&cid=wwa-us-kwgo-watch-slid--">Apple Watch </a> <a target="_blank" href="http://www.doctorwho.tv/">Dr. Who </a> </p><p><a target="_blank" href="http://www.npr.org/2017/09/14/550768280/heres-whats-in-bernie-sanders-medicare-for-all-bill">Single Payer </a> <a target="_blank" href="https://www.fitbit.com/home">Fitbit </a> <a target="_blank" href="http://www.cwtv.com/shows/supergirl/">Supergirl</a></p><p><a target="_blank" href="http://hearstcastle.org/">Hearst Castle </a> <a target="_blank" href="https://gobeyondphysicaltherapy.com/">Go Beyond Physical Therapy</a></p><p><a target="_blank" href="https://ehlers-danlos.com/2013-annual-conference-files/Chopra_Chronic_pain_and_EDS_Final_1slideS.pdf">Trigger Point Release</a> <a target="_blank" href="https://www.taskrabbit.com/?utm_source=ggl_cpc&utm_medium=paid_search&utm_term=taskrabbit&utm_content=e&utm_campaign=Google_Search_SF_Exact_Brand">Task Rabbit</a> <a target="_blank" href="https://www.amazon.com/Crock-Pot-SCCPVL600S-6-Quart-Portable-Stainless/dp/B003HF6PUO/ref=sr_1_1_sspa?s=kitchen&ie=UTF8&qid=1505495271&sr=1-1-spons&keywords=slow+cooker&psc=1"> Slow Cooker </a> </p><p><a target="_blank" href="https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880">Muldowney Method</a> <a target="_blank" href="https://5calls.org/">5 Calls App </a> <a target="_blank" href="https://www.pinterest.com/monicamichelle/invisible-not-broken/">Pinterest</a></p><p><a target="_blank" href="https://resistbot.io/">Resistbot</a> (texting as poltical actavism) <a target="_blank" href="https://www.hellomd.com/">HelloMD </a></p><hr /><h2 class="text-align-center">Shameless Plug For My New Bedtime Story Book!</h2><hr /> | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/51gOfejNHIL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new" class="product-title title">Snuggle Bunny: A Bedtime Story</a> | |
| <span class="list-price">$12.50</span> | |
| By Monica Michelle | |
| <a href="https://www.amazon.com/Snuggle-Bunny-Bedtime-Monica-Michelle/dp/1975814797?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=1975814797" target="new" class="buy-button"><input type="button" class="sqs-amazon-button sqs-system-button sqs-editable-button" value="Buy on Amazon"/></a>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Ehlers Danlos, Fibromyalgia, POTS, and Mast Cell Activation Oh My! Chronic Pain, Chronic Illness, & Invisible Illness All the Fun</itunes:subtitle><itunes:summary>Today we are talking to me about my invisible illness and many times not so invisible (thank you Ehlers Danlos for dislocations). We will be talking disabled parenting tips, the huge upsides of marijuana, healthcare in America, and chronic illness and relationships. A huge thank you to everyone who has left a review it means the world to Kyros and myself. Please share us with someone who needs a laugh or needs to not feel alone in their invisible illness. Until next time Be kind. Be gentle, and be a badass. </itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>41:16</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/597929bbe6f2e12643280501/1509653929404/1500w/IMG_4161.PNG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59bc01c637c5811f02c4accd/1505493557324/EDS-Fibromyalgia-POTS.mp3" length="59422219" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59bc01c637c5811f02c4accd/1505493557324/EDS-Fibromyalgia-POTS.mp3" length="59422219" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Invisible Illness and the Adventure of Getting a Diagnosis {Diagnosis: precious, my precious}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 11 Sep 2017 10:00:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/9/11/invisible-illness-and-the-adventure-of-getting-a-diagnosis-diagnosis-precious-my-precious</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59b2f2a0d2b85729bba6d3b8</guid><description>Click Title To Listen ToThe Podcast | |
| When you have something rare and invisible (with added issues of such | |
| things as weight, socioeconomic status, female, or age) many times a doctor | |
| has never heard of your illness or had only heard about it in passing in | |
| medical school. There can be issues of not knowing how to properly | |
| administer tests (fibromyalgia test is pressure points and many doctors | |
| still think that Ehlers Danlos can only be diagnosed if someone has super | |
| stretchy skin). Kyros had to perform most of his own diagnostic tests at | |
| home for his food allergies. | |
| I hope you enjoy this episode. It was an emotional one to record as my | |
| diagnosis took over 20 costly years to obtain and I know Kyros went through | |
| many pitfalls to get to his.</description><content:encoded><![CDATA[<hr /><h1 class="text-align-center">Your Hosts</h1><hr /> | |
| <img class="thumb-image" alt=" Kyros Starr " data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f5d99f7456da599ff12d/1504900673036/author-parrot-headshot-san-francisco-business-portrait-photographer-6.jpg" data-image-dimensions="433x433" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59b2f5d99f7456da599ff12d" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f5d99f7456da599ff12d/1504900673036/author-parrot-headshot-san-francisco-business-portrait-photographer-6.jpg?format=1000w" /> | |
| <p>Kyros Starr</p> | |
| <img class="thumb-image" alt=" Monica Michelle " data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f616a803bb7536db6cb3/1504900757833/Monica-Michelle-illustrator-kidlit-headshot.JPG" data-image-dimensions="650x650" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59b2f616a803bb7536db6cb3" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f616a803bb7536db6cb3/1504900757833/Monica-Michelle-illustrator-kidlit-headshot.JPG?format=1000w" /> | |
| <p>Monica Michelle</p> | |
| <p>Welcome to the first-panel discussion for Invisible Not Broken. My co-host <a href="http://invisiblenotbroken.com/home?tag=Bear">Kyros</a> and I are going to be talking about the most elusive and mythic beast in Invisible Illness world: getting the diagnosis.</p><p>For many getting sick is a simple visit to a doctor. They figure out what is wrong and prescribe a treatment plan.</p><p>When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (<a target="_blank" href="http://www.webmd.com/fibromyalgia/guide/fibromyalgia-diagnosis-and-misdiagnosis#1">fibromyalgia test</a> is pressure points and many doctors still think that <a target="_blank" href="https://www.ehlers-danlos.com/eds-diagnostics/">Ehlers Danlos</a> can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his <a target="_blank" href="https://www.foodallergy.org/life-food-allergies/food-allergy-101/diagnosis-testing/food-elimination-diet">food allergies</a>.</p><p>I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.</p><p>We will see you next week to talk to me. Yes, I realised I had been so excited about everyone's interviews I forgot to post mine! Tune in to hear me on the other side of the interviewing process talking about ligaments that are more used post-its than gorilla glue, the joy of dislocations from getting out of a chair, a heart that beats to its' own rhythms and whims, and the wide spread joy that is fibromyalgia.</p><p>Please share us with a friend and don't forget to subscribe and leave very nice words for us on Itunes.</p><p>Until next week</p><p>Be kind. Be gentle. Be a badass.</p> | |
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| <hr />]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Exciting Adventure of Getting An Invisible Illness Diagnosis</itunes:subtitle><itunes:summary>When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies. | |
| I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>30:30</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/59b2f2a0d2b85729bba6d3b8/1508638360909/1500w/invisible-illness-diagnosis-panel-talk-podcast.jpg"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f2d69f8dce4dd22c603e/1504899890048/Issues+With+Invisible+Illness+Diagnosis+Panel.mp3" length="43980090" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59b2f2d69f8dce4dd22c603e/1504899890048/Issues+With+Invisible+Illness+Diagnosis+Panel.mp3" length="43980090" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>A Bear, A Zombie Leg, Food Allergy, Morton's Neuroma, and Living the Spoonie Life</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 04 Sep 2017 10:10:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/8/5/bear-mortons-neuroma-food-allergy-zombie-leg-wheelchair-xgames-invisible-illness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5985e0477131a5259cc128c5</guid><description>Click Title To Hear Interview on our chronic illness podcast | |
| Meet my new co-host Kyros. He was one of the first friends I made when we | |
| moved. He and his husbands are the most loving and kind men you could ever | |
| hope to call friends. | |
| Kyros has | |
| A Cadaver part in his leg (blame it on the zombie's leg) | |
| Morton's neuroma | |
| Arthritis | |
| Dairy Allergy | |
| Spoon Theory | |
| We also cover poor city planning otherwise known as wheelchair XGames and | |
| the many meanings of "I'm fine."</description><content:encoded><![CDATA[<img class="thumb-image" alt=" Menlo Park photographer " data-image="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a9cc1c4c0dbfead427d903/1508642482253/author-parrot-headshot-san-francisco-business-portrait-photographer-5.jpg" data-image-dimensions="2500x3750" data-image-focal-point="0.5,0.5" data-load="false" data-image-id="59a9cc1c4c0dbfead427d903" data-type="image" src="https://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a9cc1c4c0dbfead427d903/1508642482253/author-parrot-headshot-san-francisco-business-portrait-photographer-5.jpg?format=1000w" /> | |
| <p>Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for <a target="_blank" href="https://www.amazon.com/Kyros-Amphiptere/e/B00W2Y0JF8/ref=dp_byline_cont_ebooks_2">Kyros</a> and his co author <a target="_blank" href="https://www.amazon.com/Orion-T.-Hunter/e/B00W32J568/ref=dp_byline_cont_ebooks_1">Orion Hunter's</a> <a target="_blank" href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book-ebook/dp/B00VHT5RII/ref=sr_1_1?s=books&ie=UTF8&qid=1504542149&sr=1-1&keywords=dreaming+of+xeres">book</a>. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass. </p> | |
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| <h1 class="text-align-center">Links From The Podcast</h1> | |
| <hr /><p><a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/mortons-neuroma/home/ovc-20202652">Morton's neuroma</a></p><p><a target="_blank" href="http://www.arthritis.org/about-arthritis/understanding-arthritis/what-is-arthritis.php">Arthritis</a></p><p><a target="_blank" href="http://acaai.org/allergies/types-allergies/food-allergy/types-food-allergy/milk-dairy-allergy">Dairy Allergy</a></p><p><a target="_blank" href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">Spoon Theory</a></p><p><a target="_blank" href="https://www.foodallergy.org/diagnosis-and-testing/food-elimination-diet">Elimination Diet</a></p><p><a target="_blank" href="https://www.uber.com/">Uber</a></p><p><a target="_blank" href="https://www.lyft.com/">Lyft</a></p><p><a target="_blank" href="https://www.taskrabbit.com/?utm_source=ggl_cpc&utm_medium=paid_search&utm_term=task%20rabbit&utm_content=e&utm_campaign=Google_Search_SF_Exact_Brand">Task Rabbit</a></p><hr /><h1 class="text-align-center"><strong>Kyros Invisible Illness Questionnaire</strong><br /> </h1><p><strong>Name: Kyros Starr</strong></p><p><strong>Age: 48</strong></p><p><strong>Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral Neuropathy</strong></p><p><strong>Age disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47</strong></p><p> </p><h3><em><strong>Who were you before your illness became debilitating? </strong></em></h3><p><strong>I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time.</strong></p><p> </p><h3><em><strong>Is there anything you would do if you were not sick? </strong></em></h3><p><strong>Ride my bike more, walk to the grocery store (It’s only 5 blocks away)</strong></p><p> </p><h3><em><strong>What should other people know about our daily life? </strong></em></h3><p><strong>I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10.</strong></p><p> </p><h3><strong>What would make living and moving in the world easier for you? </strong></h3><p><strong>Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain.</strong></p><p> </p><h3><em><strong>Life hacks? </strong></em></h3><p><strong>Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. <a href="https://www.amazon.com/gp/product/B0015A8DVM/">https://www.amazon.com/gp/product/B0015A8DVM/</a></strong></p><p> </p><h3><em><strong>Support from family or friends? </strong></em></h3><p><strong>My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. <a href="https://en.wikipedia.org/wiki/Spoon_theory">https://en.wikipedia.org/wiki/Spoon_theory</a></strong></p><p> </p><h3><em><strong>Do you find that people do not believe you are sick because of your appearance? </strong></em></h3><p><strong>All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.” </strong></p><p> </p><h3><em><strong>How has this affected you positive or negative? </strong></em></h3><p><strong>It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped off. I told them that if I ate that, I would still get sick. The waiter and the cook were both pissed at me, even though I told them upfront that I had a dairy allergy.</strong></p><p> </p><h3><em><strong>How has this affected your relationships? </strong></em></h3><p><strong>My previous relationship refused to believe that I had anything wrong. I should just “tough” it out because everyone has things that hurt. </strong></p><p> </p><h3><strong>Any questions to add to this list?</strong></h3><p><strong>Why do you think people don’t believe you when you say you have a disability?</strong></p><p><strong>What is the single greatest challenge you face on a daily basis?</strong></p><p><strong>How do you tell people that you have an invisible disability? Do you tell people?</strong></p><p><strong>Animals in the wild try to hide their disabilities because they will be preyed upon by other animals. Do you think that, on some level, that is why people with invisible disabilities try to hide their problems even from loved ones?</strong></p><p> </p><h3><em><strong>What are you afraid to tell even the people closest to you?</strong></em></h3><p><strong>That I usually burn through my daily allotment of spoons right before or during cooking dinner, but I feel I have to push through anyway because the family is depending on me to take care of things. The fact that I usually end up cleaning up dinner and doing other things around the house afterward means I am frequently beyond exhausted by the time I go to bed. </strong><br /> </p><h3><em><strong>Does the fact that your disease is invisible change how healthcare professionals treat you?</strong></em></h3><p><strong>Definitely. I have had to do my own research into what’s wrong with me on more than one instance. It was only because I pushed that I got the test/treatment I needed. For example, I found out about and performed the elimination diet to find out what was making me sick (dairy), not my doctor.</strong></p><p> </p><h3><em><strong>Best coping mechanism?</strong></em></h3><p><strong>I do the shopping. That way I can ensure that I read the labels and not accidentally get something that contains hidden dairy. As far as my feet and arthritis problems, I’m lucky enough that we can afford for me to get weekly massages that help with the pain.</strong></p><p> </p><h3><em><strong>Favorite swear word? </strong></em></h3><p><strong>Fuck! Or Motherfucker.</strong></p><p> </p><h3><em><strong>What are you the most fearful of and what are you the most hopeful for in the future?</strong></em></h3><p><strong>I’m fearful that my condition will continue to deteriorate to the point where I cannot walk at all without assistance. This would make life very difficult as my house has lots of stairs and I would not be able to take care of my family like I do now. I also would no longer feel like I was contributing to my family.</strong></p><p> </p><p><strong>I’m hopeful that, with advances in medicine, something can be done about my various problems so that I can go back to having an active life where I don’t have to think about ‘how far can I realistically go / walk’ or that I can go out to eat without having a near panic attack worrying that there will be hidden dairy in my food that will make the next several days hell.</strong></p><p> </p><h1 class="text-align-center">Support Kyros</h1> | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book-ebook/dp/B00VHT5RII?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00VHT5RII" target="new"> | |
| <img src="https://images-na.ssl-images-amazon.com/images/I/61PMQBs1-tL.jpg"/> | |
| </a> | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book-ebook/dp/B00VHT5RII?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00VHT5RII" target="new" class="product-title title">Dreaming of Xeres (The Third War Book 1)</a> | |
| <span class="list-price"></span> | |
| By Orion T. Hunter, Kyros Amphiptere | |
| <a href="https://www.amazon.com/Dreaming-Xeres-Third-War-Book-ebook/dp/B00VHT5RII?SubscriptionId=AKIAIOCEBIGP6NUBL47A&tag=monimichblog-20 &linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00VHT5RII" target="new" class="buy-button"><input type="button" class="sqs-amazon-button sqs-system-button sqs-editable-button" value="Buy on Amazon"/></a> | |
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| <hr />]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>A Bear, Zombie Leg, Food Allergy, Morton's Neuroma, and Living the Spoonie Life</itunes:subtitle><itunes:summary>Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. | |
| Kyros has | |
| A Cadaver part in his leg (blame it on the zombie's leg) | |
| Morton's neuroma | |
| Arthritis | |
| Dairy Allergy | |
| Spoon Theory | |
| We also cover poor city planning otherwise known as wheelchair XGames and the many meanings of "I'm fine."</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>60:00</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5985e0477131a5259cc128c5/1508642482258/1500w/BCAB4461-34F0-4DC1-9B57-04FF5CF3672D.JPG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a9dd5f8419c2a53cb660b1/1508642482256/Kyros.mp3" length="86210060" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a9dd5f8419c2a53cb660b1/1508642482256/Kyros.mp3" length="86210060" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 28 Aug 2017 10:29:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/8/11/searching-for-chronic-illness-diagnosis-in-american-healthcare-system-its-funnier-than-it-sounds-and-just-as-frustrating</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:598de96ff14aa1a306a532f4</guid><description>Click title listen to our invisible illness podcast about being sick in | |
| America (oh yes this will get political), parenting with an invisible | |
| illness, and some slam poetry. | |
| Listen to the podcast here | |
| If you enjoy | |
| 1. Share with someone who needs to hear this | |
| 2. Subscribe | |
| 3. Glowing and loving reviews on itunes are encouraged | |
| PTSD, Chronic Pain, Extensive nerve injury nerve injuries in both arms, | |
| Not Quite Fibromyalgia (is that a thing?), planters fasciitis, | |
| Anxiety/Depression | |
| (...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing | |
| podcast interviews...) After watching Jen through the interview I was | |
| impressed at all of the crazy shapes she was making while stretching. She | |
| also has the swan deformity and so many other symptoms of the disorder I | |
| have. | |
| Did I get lucky! I got to make a new friend. I hope you enjoy listening to | |
| Jen. She is an amazing poet and at the end of the interview, you can hear | |
| two very powerful poems. She is hilarious and strong. She has been dealing | |
| with being sick and frail even though she has made massive changes (losing | |
| 100lbs) and has just started in on her 40's. We talk about parenting with a | |
| chronic illness, the American healthcare system (buckle up its' about to | |
| get political), the importance of art when you can't get out of bed, and | |
| how important friendships are especially when you are dealing with chronic | |
| invisible illness. </description><content:encoded><![CDATA[<figure> | |
| <blockquote> | |
| <span>“</span>I put it down to herd animal weakness. I don’t want to show I could get picked off...I don’t want anyone to know..I’m here as the weakest gazelle going oh shit!<span>”</span> | |
| </blockquote> | |
| <figcaption class="source">— Jen Toal</figcaption> | |
| </figure><p>Did I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (loosing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness. </p> | |
| <p class="text-align-center"><strong>Ms. T's Answers {More Bad Ass Than Mr. T}</strong></p><p>Jen Toal</p><p> Age 40</p><p class="text-align-center"><strong>Conditions</strong></p><p><a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/home/ovc-20308548">PTSD</a>, <a target="_blank" href="http://www.mayoclinic.org/understanding-pain/art-20208632">Chronic Pain</a>, <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/peripheral-nerve-injuries/ovc-20337026">Extensive nerve injury</a> nerve injuries in both arms, Not Quite <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786">Fibromyalgia</a> (is that a thing?), <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/plantar-fasciitis/home/ovc-20268392">planters fasciitis</a>, <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/anxiety/home/ovc-20168121">Anxiety/Depression</a></p><p>(...Hang on, maybe<a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656"> Ehlers-Danlos</a>?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the<a target="_blank" href="https://www.google.com/search?q=swan+deformity+ehlers+danlos+mayo&tbm=isch&tbo=u&source=univ&sa=X&ved=0ahUKEwjlstrbneTVAhWJg1QKHUv_A5cQsAQIJw&biw=1145&bih=1260"> swan deformity</a> and so many other symptoms of the disorder I have.</p><p>I can remember school officials started stepping in around middle school to try to help Mom and I address my symptoms. They couldn't find much obviously wrong with me, except for some scoliosis. In high school, I was given special locker accommodations each year to try to help reduce the load on my body and as an eighteen-year-old, our family doctor explained to me that I was experiencing the same daily pain as most eighty-year-olds. This was before the injuries of my twenties and thirties.</p><p>I didn't get far working with that doc because growing up means losing access to health care in our country. </p><p> </p><p>In my early twenties, I was working in tech support and saving for further college when all the nerves on both my arms were blown out by repetitive stress from typing. I spent the next several years in surgery and disabled. I got LOTS of doctor attention, but only on the subject of my work injuries. They were there to repair me from what they had done, not heal me overall. </p><p> </p><p>The worst part of those years was being unable to draw. </p><p> </p><p>In my thirties I found reasons to stop giving up on my life, most notably my husband, John, and our sweet child. John and I changed so many of our daily habits that together we lost three hundred pounds. </p><p><a target="_blank" href="https://www.facebook.com/shapeshifterconfessions/">https://www.facebook.com/shapeshifterconfessions/</a></p><p> </p><p>Losing 45% of my pre pregnancy body weight has done amazing things for my health, but it's not the miracle cure it *looks* like from the outside. For one thing, jumping up out of my sick bed to chase my snuggly little kettle bell around gave me a wicked case of <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/plantar-fasciitis/home/ovc-20268392">Plantar Fasciitis.</a> It's a remarkably painful addition to my dappling of symptoms but was acceptable collateral damage to me.</p><p> </p><p><strong>1. Who were you before your illness became debilitating?</strong></p><p>A child. </p><p> </p><p><strong>2. Is there anything you would do if you were not sick? </strong></p><p>There are so many things. I would have so much more of a career. I would travel. I would go out in the evenings and be around people. I would make so much more art. </p><p> </p><p><strong>3. What should other people know about our daily life?</strong></p><p>That it's super easy for them to forget, but it's always there, reminding me. That it's exhausting to manage pain.</p><p> </p><p><strong>4. What would make living and moving in the world easier for you?</strong></p><p>Single Payer Healthcare and Universal Basic Income. </p><p> </p><p>In my twenties I spent a lot of time with people who liked to play, "What if we won the lottery??" My answers always began with access to doctors and therapists.</p><p> </p><p><strong>5. Life hacks?</strong></p><p>Tennis balls are my latest favorite backpack staple. I sit and lean on them for point massage. They are especially magical for car trips, which have always been rugged for me.</p><p>My backpack itself is my favorite tool, but like many medications that come with side effects, the magic bag does sometimes get ridiculously heavy.</p><p> </p><p><strong>6. Support from family or friends?</strong></p><p>I married really well. My husband is marvelously supportive and encouraging. My mother would help more if she were closer. </p><p>Friend community cares from afar, but we are all spread so perilously thin...</p><p>I saw this art show with a display that said, "We are living in an era that is testing the limits of everyone's compassion." I worry about all of us. Times are tough, and getting tougher, and I don't feel like my communities have the space to hold me up. Not because they don't care, but because they're fighting so hard to keep themselves going.</p><p> </p><p><strong>7. Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?</strong></p><p>Yes. All the time. It's horrible. I spend a bunch of time disappointing the humans around me because I look so healthy, especially after my weight loss, but I am still frustratingly limited.</p><p> </p><p><strong>8. How has this affected your relationships?</strong></p><p>It torpedoes them sometimes. On the other hand, it can allow for deep bonding when we understand each other.</p><p> </p><p><strong>9. What are you afraid to tell even the people closest to you?</strong></p><p>How bad the pain is. How pervasive it is. How scared I am of the future.</p><p> </p><p><strong>10. Does the fact that your disease is invisible change how healthcare professionals treat you?</strong></p><p>Yes. They often disbelieve me. I've been accused of being drug seeking. Which is pretty funny, given how much time John spends trying to convince me to take something.</p><p> </p><p><strong>11. Best coping mechanism?</strong></p><p>Diffuse awareness. Forgetting. Drawing.</p><p> </p><p><strong>12. Favorite swear word?</strong></p><p>John says if hell counts, it's hell. Lol</p><p>I have a hard time picking. Shit, fuuuuuuuuuuuuuck, godsdammit.</p><p> </p><p><strong>13. What are you the most fearful of and what are you the most hopeful for in the future?</strong></p><p>I'm terrified that I'll be unable to support my family in the ways they need me. I'm hopeful about the ways I have learned over the years that people make their livings with skills I totally retain access to, even as my spacesuit gets quietly wonkier...</p><p class="text-align-center"><strong>Cardboard Decades</strong></p><p> </p><p>when i say ricky was my best friend, what i mean is </p><p>he was my first consensual sexual partner</p><p>i turned 5 while mom and i lived in his mother's house</p><p>he was 6</p><p> </p><p>i once pulled his little brother, fallen-comrade-style, </p><p>across train tracks in the very nick</p><p>wouldn't know for decades how scared i should've been</p><p> </p><p>they taught me prank calling and ladybug sailing </p><p>how to be kind to the kind doberman </p><p>and keep my dolls far away from the angry one</p><p> </p><p>ricky and i were softness and exploration </p><p>in an already cruel and confusing world</p><p> </p><p> </p><p>i remember being 8 or so </p><p>sun-drenched in the back of my grandmother's very nice car</p><p>i wouldn’t know for decades about love languages </p><p>but i knew in california i was given things, but few hugs</p><p>and in texas, hugs, but few things</p><p> </p><p>i preferred hugs</p><p> </p><p>but it was well known that "daddy warbucks" </p><p>and family had more money than made any sense</p><p>and they didn't get as much time to be affectionate</p><p>so it made sense</p><p>that they'd want me to have touchstones of affection</p><p>when i went back to my mother's wars</p><p> </p><p>how could they know?</p><p> </p><p>mom would send them letters, </p><p>as she says, "full of things we never did. </p><p>places we were never going to be."</p><p> </p><p>it wasn't just that we couldn't get above the poverty line</p><p> </p><p>i wouldn’t know for decades the term “human trafficking” </p><p> </p><p>my poor mother.</p><p> </p><p>i also hadn't learned the different ways a car can sit </p><p>that day i was walking home</p><p>with ricky</p><p>mom pulled over</p><p>countenance confusing</p><p>told me only i could get in</p><p>drove away</p><p>before telling me we'd never go back</p><p> </p><p>i would never say goodbye</p><p> </p><p>i wouldn’t know for decades</p><p>that the reason no one understands </p><p>what i mean when i say </p><p>we “moved a lot” when i was a kid </p><p>is because i don't understand </p><p>what i should be saying </p><p>is we were homeless </p><p>for more of my childhood</p><p>than i had realized.</p><p> </p><p>only way to explain </p><p>we have to move whenever someone gets mad</p><p> </p><p>or</p><p> </p><p>my doll protects me from the mean girl</p><p>i share a bed with </p><p> </p><p>or</p><p> </p><p>we take my most evil stepdad back</p><p>eleven times</p><p> </p><p>he's charming</p><p>and when he's around churches don't have to bring us things</p><p> </p><p>or</p><p> </p><p>the motels. national parks. so many places </p><p>i stop calling where i sleep anything other than "the house"</p><p>know if i learn the path from house to grocery, it’s probably time to go</p><p> </p><p>try out different versions of my name in different schools</p><p> </p><p> </p><p>sometimes compassion is a shovel to the gut</p><p>often my mother wakes up screaming</p><p> </p><p>i’ll never know how many trains she pulled us from the teeth of.</p><p> </p><p>only reluctantly came to see the damage of </p><p>rootlessness on a childhood</p><p> </p><p>perpetual motion was our only way of survival. </p><p> </p><p>i ran into ricky a couple years later</p><p>awkward amongst other kids</p><p>eons away from the life we had shared</p><p> </p><p>i’ve been trying to shift my relationship with cardboard</p><p>dismantling all my boxes</p><p>learning to build some belief</p><p> </p><p>i might just get to stay</p><hr /><p> </p><p>advice i am giving myself</p><p>upon meeting new soul mates</p><p> </p><p>stand solidly </p><p>if you are able</p><p>hold your form fluid </p><p>brace for beauty</p><p> </p><p>and the way it always </p><p>knocks you over</p><p> </p><p>notice press of globe</p><p>up through soles</p><p> </p><p>marvel at the moments experience</p><p>and universal </p><p>shake hands</p><p> </p><p>trade knees</p><p> </p><p>compare the roads you have run</p><p>the trees you jumped out of</p><p>the places your jeans have worn through</p><p> </p><p>skip right past groins and sex</p><p>this isn't that poem</p><p> </p><p>and connection</p><p>can be better</p><p>for being less obvious</p><p> </p><p>instead</p><p>press your belly buttons together</p><p>a meeting of absences</p><p> </p><p>shared space to frame things</p><p> </p><p>frame things</p><p>redo this if it</p><p>feels more truthful</p><p> </p><p> </p><p>consider the strengths of your mat</p><p>let the space placed around</p><p>your best work</p><p>have its own things to say</p><p> </p><p>say things</p><p>out loud</p><p> </p><p>experience is meant to be shared</p><p> </p><p>and no one needs your </p><p>perspective</p><p>more than a soul mate</p><p> </p><p>trade scars stories </p><p>(tattoos totally count)</p><p> </p><p>tell each other tales of the ways </p><p>the world hasn't ended</p><p>even if it left a mark</p><p> </p><p>breathe</p><p> </p><p>feel belly press belly</p><p>laugh</p><p> </p><p>you've been sucking down discord</p><p>all day</p><p> </p><p>like too little sleep</p><p>too much wireless</p><p>and a fundamental disconnect</p><p>from how our species evolved</p><p>to thrive</p><p> </p><p>agree to thrive anyway</p><p> </p><p>slice out space for each other</p><p>in the places you</p><p>forget to feel shame </p><p> </p><p>allow yourself</p><p>and each other</p><p>forgiveness</p><p> </p><p> </p><p>for everything you’ve ever believed was wrong with you.</p><p> </p><p>there’s never been anything wrong with you.</p><p>except not knowing there was nothing wrong with you.</p><p> </p><p>forgive yourself </p><p>for lying to yourself</p><p>in order to stay small</p><p> </p><p>it’s okay to not be everything</p><p> </p><p>we are all of us everything together</p><p>and we forget we don’t have to </p><p>do it alone</p><p> </p><p>give up the notion </p><p>you may somehow </p><p>be on the same page</p><p> </p><p>you’ve only just collided </p><p>from across the cosmos</p><p> </p><p>the particular constellation </p><p>of harmonic convergences </p><p>your empty spaces </p><p>express</p><p>as you pass through each other</p><p> </p><p>are not the same</p><p>as being the same</p><p> </p><p>we are stronger for our differences</p><p> </p><p>befuddling though they be</p><p> </p><p>decide this is the game</p><p>and that you are always winning.</p><p> </p><p>because you are.</p><p> </p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)</itunes:subtitle><itunes:summary>Today I am talking with Jen a mom, a poet, and an amazing artist. We get deep into the weeds of the American health care system, chronic pain, Disney animals not living up to their promise, weight loss | |
| Fibromyalgia, what it's like to look for an invisible illness diagnosis, and parenting with a chronic illness.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>58:15</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/598de96ff14aa1a306a532f4/1532152821059/1500w/cronic-illness-american-healthcare.jpg"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a5dadad482e90144f8e315/1504042087191/Jen+Interview.mp3" length="83891640" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/59a5dadad482e90144f8e315/1504042087191/Jen+Interview.mp3" length="83891640" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title>Fibromyalgia, Anxiety, & College Oh My Part 1 {Invisible Illness}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Mon, 21 Aug 2017 10:44:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/7/26/fibromyalgia-anxiety-college-oh-my-invisible-illness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5979297dbf629a07f4cee528</guid><description>Click Title To Hear Our Fibromyalgia and Anxiety Episode on our Chronic | |
| Illness Podcast | |
| Thank you so much for joining me in this weeks episode of Invisible Not | |
| Broken. Today I am going to be talking to Ms. O about her Fibromyalgia | |
| symptoms and some of her Fibromyalgia Treatment as well as her anxiety | |
| symptoms all while the wonderful girl is in college. | |
| I met Miss O and did a minor bit of pleading for her to come on the | |
| invisible illness podcast. I think I just simply believe everyone should | |
| have a chance to meet her. It seemed a little unfair that just by chance I | |
| got to. Miss O at her early 20's has figured out so many things that I took | |
| the long road to. I hope you enjoy listening to her and getting to know her | |
| as much as I did. | |
| To learn more about Fibromyalgia | |
| To learn more about Anxiety | |
| Thank you so much. Please share the podcast with a friend and leave an | |
| embarrassingly glowing review on iTunes!</description><content:encoded><![CDATA[<p>Thank you so much for joining me in this weeks episode of Invisible Not Broken. Today I am going to be talking to Ms. O about her Fibromyalgia symptoms and some of her Fibromyalgia Treatment as well as her anxiety symptoms all while the wonderful girl is in college.</p><p>I met Miss O and did a minor bit of pleading for her to come on the podcast. I think I just simply believe everyone should have a chance to meet her. It seemed a little unfair that just by chance I got to. Miss O at her early 20's has figured out so many things that I took the long road to. I hope you enjoy listening to her and getting to know her as much as I did.</p><p>To learn more about <a target="_blank" href="http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786">Fibromyalgia</a></p><p>To learn more about <a target="_blank" href="https://www.adaa.org/understanding-anxiety">Anxiety</a></p><p>To learn about <a target="_blank" href="http://www.webmd.com/mental-health/addiction/news/20160919/what-is-kratom-dea-ban#1">Kratom</a></p><p><a target="_blank" href="https://swalwell.house.gov/office-locations">To learn about Eric Swalwell</a></p><p>To learn about <a target="_blank" href="https://www.taskrabbit.com/">TaskRabbit</a></p><p>Thank you so much. Please share the podcast with a friend and leave an embarrassingly glowing review on iTunes! There was a tiny break in the audio because parent and child came running in I promise it's only a few seconds.</p> | |
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| </form>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle>Fibromyalgia and Anxiety: Going to college and Traveling With Invisible Illnesses</itunes:subtitle><itunes:summary>This week in Invisible Not Broken I talk to my youngest interviewee Ms. O who is heading to college at the end of this month. We go over what it is like to be a college student with fibromyalgia and anxiety, how to travel with an invisible illness, what it is like when your doctor does not believe your invisible illness really exists (fibromyalgia), and what it is like to know the FDA is deciding if your pain medication will be made illegal or not. Thank you so much for listening to my interviews of people with an invisible illness. If you enjoy please hit subscribe and share with someone you think could benefit. Until next week: Be kind. Be gentle. Be a badass.</itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>39:55</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5979297dbf629a07f4cee528/1508642355163/1500w/IMG_0007.PNG"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/599785c5bebafbb3c13419ba/1503102596727/Fibromyalgia_Anxiety_Disorder_and_College__8_8_17__346_PM-EDIT.mp3" length="95813924" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/599785c5bebafbb3c13419ba/1503102596727/Fibromyalgia_Anxiety_Disorder_and_College__8_8_17__346_PM-EDIT.mp3" length="95813924" type="audio/mpeg" isDefault="true" medium="audio"/></item><item><title> Amyloidosis, Parenting When Chronically Ill, What Not to Ask Sick People, Best idea for Airbnb {chronic illness podcast}</title><category>Interview</category><dc:creator>Monica Michelle</dc:creator><pubDate>Sat, 12 Aug 2017 13:30:00 +0000</pubDate><link>http://invisiblenotbroken.com/home/2017/8/1/amyloidosis-what-not-to-ask-sick-people-best-idea-for-airbnb-invisible-illness</link><guid isPermaLink="false">537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5980e2f5ebbd1a26c493a3e3</guid><description>Click On Title To Listen To Chronic Illness Podcast | |
| Invisible Illness does not get much more invisible than Dawn. I can not | |
| remember when she first told me she was sick but I promise I was shocked, | |
| even with my invisible illness spidey sense. Please listen to the end to | |
| find out the best questions to ask a sick person and why "How are you | |
| doing?" should just be removed from the conversation. We also came up with | |
| the best idea for Airbnb if they want a how to rock at helping people idea. | |
| Thank you so much for listening to Invisible Not Broken. Please subscribe | |
| to the podcast to hear more interviews and of course leave an | |
| embarrassingly glowing review on iTunes. | |
| Dawn's Recommendations for Spoonie Survival | |
| Spoon Theory Amazon Fresh Airbnb Netflix Amazon Prime Video Girlfriends | |
| Guide to Divorce {Streaming on Netflix as of 7.17} Dr. Who {streaming on | |
| Amazon Prime as of 7.17} | |
| </description><content:encoded><![CDATA[<p> Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for <a target="_blank" href="https://www.airbnb.com/?af=43720035&c=A_TC%3Dta2zq9t9w9%26G_MT%3De%26G_CR%3D191568602767%26G_N%3Dg%26G_K%3Dairbnb.%26G_P%3D%26G_D%3Dc%26$pi:0.pk:25650614176_191568602767_c_59096482055&atlastest5=true&gclid=CjwKCAjwzYDMBRA1EiwAwCv6JrqvbCEYiQyTBOTcRyd_HsLz8l1htLEdnaYHn_YZJXMoPU79kW_bdRoC-pgQAvD_BwE">Airbnb</a> if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.</p><p class="text-align-center">Until next week:</p><p class="text-align-center">Be Kind. Be Gentle. Be a Bad Ass.</p> | |
| <a href="http://www.amyloidosis.org/facts/familial/" class="sqs-block-button-element--large sqs-block-button-element" target="_blank">Learn More</a> | |
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| <h1 class="text-align-center">Dawn's Reccomendations for Spoonie Survival</h1><hr /><h1 class="text-align-center"><a target="_blank" href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">Spoon Theory</a></h1><h1 class="text-align-center"><a target="_blank" href="https://www.amazon.com/b?node=10329849011&tag=googhydr-20&hvadid=194951363734&hvpos=1t1&hvexid=&hvnetw=g&hvrand=18269377043567155810&hvpone=&hvptwo=&hvqmt=e&hvdev=c&ref=pd_sl_819dwrhx4j_e&hvtargid=kwd-361607079597">Amazon Fresh</a></h1><h1 class="text-align-center"><a target="_blank" href="https://www.airbnb.com/?af=43720035&c=A_TC%3Dfmeb9dyr2w%26G_MT%3De%26G_CR%3D191568602767%26G_N%3Dg%26G_K%3Dairbnb%27%26G_P%3D%26G_D%3Dc%26$pi:0.pk:25650614176_191568602767_c_59096481935&atlastest5=true&gclid=CjwKCAjw2ZXMBRB2EiwA2HVD-LV_39GyCnjBRCY74NVgXwFK74KqFAiQghUv9rieESGAzX_lh2WjAxoCLPgQAvD_BwE">Airbnb</a></h1><h1 class="text-align-center"><a target="_blank" href="http://www.netflix.com/">Netflix</a></h1><h1 class="text-align-center"><a target="_blank" href="https://www.amazon.com/Prime-Video">Amazon Prime Video</a></h1><h1 class="text-align-center"><a target="_blank" href="http://www.bravotv.com/girlfriends-guide-to-divorce">Girlfriends Guide to Divorce {Streaming on Netflix as of 7.17}</a></h1><h1 class="text-align-center"><a target="_blank" href="http://www.doctorwho.tv/">Dr. Who {streaming on Amazon Prime as of 7.17}</a></h1><hr /><h1 class="text-align-center">Questionairre Answears</h1><hr /><h2>1) Who were you before your illness became debilitating?</h2><h3>An "active" mom who went biking with her kids, a participant in our lives instead of an observer. An "athletic" woman...biking up Redwood Road, a gym rat.</h3><h2>2) Is there anything you would do if you were not sick? </h2><h3>Take my son and daughter mountain bike riding. Seek out trails farther away. Consider teaching full time.</h3><h2>3) What should other people know about our daily life?</h2><h3>I "bank" my energy, so if there is a busy day coming up...I plan on nothing before and after to gather up and replenish. I have a hard time committing night's out with friends as by 8pm I'm ready to go to bed.</h3><h2>4)What would make living and moving in the world easier for you?</h2><h3>More help with my kids for doctors appointments. More naps.</h3><h2>5) Life hacks?</h2><h3>Child labor! Taking my husband up on his offer to do more and telling him specifically what needs to get done. Considering ordering groceries from AmazonFresh.</h3><h2>6) Support from family or friends?</h2><h3>Yes and No..for the big trips across country yes! But for the every day, it's harder as we all don't live near one another.</h3><h2>7) Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?</h2><h3>I get more reactions from people when I'm having a tough day...when I'm feeling strong or having a good day...there's always a strange vibe like "you can do this?"</h3><h2>8. How has this affected your relationships?</h2><h3>The circle of friends has shrunk for sure. I just don't have the energy to be "out there" and putting energy out for that many people...I have to bank my energy for my kids and husband and myself. People don't reach out to me as I often end up saying "no" to going out or hanging out.</h3><h3>9. What are you afraid to tell even the people closest to you?</h3><h3>I am truly afraid of dementia. There are times that I have brain fog and can't come up with a word or forget a word or blank on something I committed to. That's part of being a parent and dealing with everything...but I can't chase that demon off. I watch my handwriting as that was what I first noticed with my mom.</h3><h2>10. Does the fact that your disease is invisible change how healthcare professionals treat you?</h2><h3>Yes, I had an Amyloid special tell me I should go running. I would love that if it weren't for the fear of stumbling and falling. Another specialist didn't believe me.</h3><p> </p><iframe allowfullscreen src="https://www.youtube.com/embed/-6P42OmLc2o" width="560" frameborder="0" height="315" gesture="media"></iframe>]]></content:encoded><itunes:author>Invisible Not Broken</itunes:author><itunes:subtitle> Amyloidosis, Parenting When Chronically Ill, What Not to Ask Sick People, Best idea for Airbnb </itunes:subtitle><itunes:summary> Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. If you enjoyed please share with someone you think would enjoy. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes. | |
| Until next week: | |
| Be Kind. Be Gentle. Be a Bad Ass. | |
| </itunes:summary><itunes:explicit>yes</itunes:explicit><itunes:duration>01:03:33</itunes:duration><itunes:image href="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/58ae6322d2b85789f820fbfa/5980e2f5ebbd1a26c493a3e3/1510940990789/1500w/Amyloidosis-invisible-illness-podcast.Jpg"/><enclosure url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5998a8619f745608b1607fad/1503176997634/Amyloidosis%2Band%2BParenting%2Bwith%2Bchronic%2Billness.mp3" length="91982660" type="audio/mpeg"/><media:content url="http://static1.squarespace.com/static/537bc58de4b05e70b36fe482/t/5998a8619f745608b1607fad/1503176997634/Amyloidosis%2Band%2BParenting%2Bwith%2Bchronic%2Billness.mp3" length="91982660" type="audio/mpeg" isDefault="true" medium="audio"/></item></channel></rss> |
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