Chronic Illness Podcast

Monica Michelle is once again joined by musician, chef, and activist Dione Bullard. Dione lives with <a href="https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/end-stage-kidney-disease#:~:text=ESRD%20occurs%20when%20the%20kidneys,comes%20after%20chronic%20kidney%20disease." rel="noopener noreferrer" target="_blank">End Stage Renal Disease</a>. In this episode, Monica and Dione discuss:&nbsp;<ul><li>Favorite TV shows</li><li>Favorite books</li><li>Moments of delight</li><li>Parenting</li></ul> <h1>TIMESTAMPS</h1>02:20 - Platonic11:42 - Somewhere Boy14:09 - More favorite shows21:38 - Favorite books26:17 - Appreciating moments of delight30:42 - Parenting through guided experience Series mentioned in this episodeAvailable on Apple TV+<ul><li>Platonic</li><li>Silo</li><li>Foundation</li><li>Dickinson</li></ul>Available on Hulu<ul><li>Somewhere Boy</li><li>The Righteous Gemstones</li><li>Bewitched</li></ul>Available on Netflix<ul><li>Bridgerton</li><li>Glamorous</li><li>DAHMER</li></ul>Other<ul><li>I Am a Virgo - Available on Prime Video</li><li>Our Flag Means Death - Available on (HBO) Max</li><li>The Life and Times of Total Made Grace</li></ul> The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com</a>

Talking TV, Reading, Happiness, and Parenting with Dione Bullard

Monica Michelle is joined by activist Cosmo C. Cosmo lives with <a href="https://pubmed.ncbi.nlm.nih.gov/26357631/#:~:text=Acute%20Hepatic%20Porphyria.%20The%20porphyrias%20comprise%20a%20set,In%20the%20case%20of%20the%20acute%20%28neurologic%29%20porphyrias%2C" rel="noopener noreferrer" target="_blank">porphyria</a>, <a href="https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125" rel="noopener noreferrer" target="_blank">Ehlers-Danlos syndrome</a>, and <a href="https://www.niams.nih.gov/health-topics/fibromyalgia#" rel="noopener noreferrer" target="_blank">fibromyalgia</a>. In this episode, Monica and Cosmo discuss:&nbsp;<ul><li>Pets</li><li>LARPing</li><li>Disability income and surviving on it</li><li>Privilege and Prejudice</li></ul> <h1>TIMESTAMPS</h1>00:33 - Cats and LARPing12:05 - Adulting on disability income22:01 - Privilege and prejudice31:19 - Deadlines, speech, and steroids The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com</a>

Adulting on Disability Income, Reflecting on Privilege and Prejudice: Cosmo

Monica Michelle is joined by musician, chef, and activist Dione Bullard. Dione lives with <a href="https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/end-stage-kidney-disease#:~:text=ESRD%20occurs%20when%20the%20kidneys,comes%20after%20chronic%20kidney%20disease." rel="noopener noreferrer" target="_blank">End Stage Renal Disease</a>. In this episode, Monica and Dione discuss:&nbsp;<ul><li>End Stage Renal Disease</li><li>Self Advocacy as a Patient</li><li>Dion’s Music &amp; Cooking</li></ul> <h1>TIMESTAMPS</h1>06:17 - Dion’s diagnosis14:44 - Music career &amp; food21:42 - Self advocacy26:05 - Disparities in care of dialysis centers31:27 - How to speak with healthcare professionals35:22 - Distilling down our purpose in life37:11 - Favorite apps and culinary tools The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com</a>

Resilience & Self-Advocacy in Health, Music, and Culinary Arts: Dione Bullard

Monica Michelle is joined by activist Kim Luke. Kim lives with <a href="https://www.scoliosisreductioncenter.com/blog/multilevel-spondylosis" rel="noopener noreferrer" target="_blank">multilevel spondylosis</a>, <a href="https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots" rel="noopener noreferrer" target="_blank">POTS</a>, and <a href="https://www.niams.nih.gov/health-topics/fibromyalgia#" rel="noopener noreferrer" target="_blank">fibromyalgia</a>. In this episode, Monica and Kim discuss:&nbsp;<ul><li>Kim’s story</li><li>Pain clinic negligence</li><li>Disability tech &amp; advocacy</li></ul> <h1>TIMESTAMPS</h1>00:51 - How Kim started10:54 - Kim’s work16:03 - Pain clinic negligence19:33 - Healthcare in politics27:08 - Recommendations for teaching and advocacy31:47 - Disability Tech Business Idea36:04 - The flat effect40:12 - Pillows! The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com</a>

Chronic Pain, Opioid Hysteria, and Tech Tools for Advocacy: Kim Luke

Monica Michelle is joined by lawyer, author, comedian, and activist Julia Irzyk. Julia lives with <a href="https://www.niams.nih.gov/health-topics/lupus#:~:text=Lupus%20occurs%20when%20the%20immune,circulating%20blood%20cells%2C%20and%20brain." rel="noopener noreferrer" target="_blank">Lupus</a>, <a href="https://www.cdc.gov/arthritis/basics/osteoarthritis.htm#:~:text=Osteoarthritis%20(OA)%20is%20the%20most,underlying%20bone%20begins%20to%20change." rel="noopener noreferrer" target="_blank">Osteoarthritis</a>, <a href="https://my.clevelandclinic.org/health/diseases/16912-degenerative-disk-disease" rel="noopener noreferrer" target="_blank">Degenerative Disk Disease</a>, and <a href="https://www.niams.nih.gov/health-topics/fibromyalgia#:~:text=Fibromyalgia%20is%20a%20chronic%20(long,a%20heightened%20sensitivity%20to%20pain." rel="noopener noreferrer" target="_blank">Fibromyalgia</a>. In this episode, Monica and Julia discuss:&nbsp;<ul><li>The state of COVID-19 in 2023</li><li>Julia's new book, "Disabilities and the Law, 4th Edition"</li><li>The entertainment industry</li><li>Access to pain medication</li></ul> <h1>TIMESTAMPS</h1>00:56 - COVID-1909:10 - Masks in healthcare environments16:31 - Wheelchairs, flipping them, and HIPPA18:21 - Julia’s new book23:03 - COVID-19 in the entertainment industry24:57 - Access to pain medicine33:26 - Final Thoughts The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com </a>

Fighting for Disability in Law, in the Entertainment Industry, and in a Pandemic Society: Julia Irzyk

Monica Michelle is joined by activist Lisa Weiner. Lisa lives with <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/charcotmarietooth-disease" rel="noopener noreferrer" target="_blank">Charcot Marie Tooth Disease</a> and <a href="https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Scoliosis" rel="noopener noreferrer" target="_blank">Scoliosis</a>. In this episode, Monica and Lisa discuss:&nbsp;<ul><li>Growing up with CMT and Scoliosis</li><li>Dealing with braces</li><li>Living and moving around San Francisco with a chronic illness</li><li>Finding community resources</li><li>Discovering simple tools that can help with daily activities</li></ul> <h1>TIMESTAMPS</h1>0:37 - What is Charcot Marie Tooth Disease?4:42 - Lisa’s experience growing up with CMT19:07 - Braces are no fun24:47 - Center for Independence of Individuals with Disabilities20:30 - CMT Association Awareness Month31:55 - Final Thoughts The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/home-chronic-illness-podcast/charcot-marie-tooth-disease-scoliosis-and-accessible-tech-lisa-weiner" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com </a>Thank you and enjoy!

Charcot Marie Tooth Disease, Scoliosis, and Accessible Tech: Lisa Weiner 

Monica Michelle is joined by award-winning author Alyssa Graybeal. Alyssa lives with <a href="https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/" rel="noopener noreferrer" target="_blank">Ehlers-Danlos Syndrome</a>. In this episode, Monica and Alyssa discuss:&nbsp;<ul><li>Alyssa’s new book</li><li>Monica and Alyssa discuss being a sick kid with creativity</li><li>Pacing your work in a hustle-driven culture</li><li>Emergency rooms &amp; technology</li><li>The benefits of talking about your story</li></ul> <h1>TIMESTAMPS</h1>1:10 - Floppy – Tales of a Genetic Freak of Nature at the End of the World4:40 - Alyssa talks about being a creative sick kid8:21 - Pacing, hustle culture, and self-gaslighting14:25 - Building the confidence to come back home to your body16:55 - Finding your career20:02 - Alyssa’s art space22:23 - Emergency rooms26:22 - Technology32:43 - The benefits of talking about your story36:55 - Alyssa’s cats40:25 - Favorite books The full transcript and all links mentioned can be found on <a href="https://invisiblenotbroken.com/explicitly-sick/explicitly-sick-lisa-weiner-charcot-marie-tooth-disease" rel="noopener noreferrer" target="_blank">the episode page on invisiblenotbroken.com </a>

EDS Author of Floppy - Tales of a Genetic Freak of Nature at the End of the World: Alyssa Graybeal

Monica Michelle is joined by Dale Critchley. They discuss his revolutionary Kickstarter campaign in making disabled D&amp;D NPC Cards and Miniatures. Dale is hard of hearing and has ADHD. <a href="https://www.kickstarter.com/projects/wyrmworkspublishing/limitless-champions-disabled-dandd-5e-npc-cards-and-miniatures?ref=c57759" rel="noopener noreferrer" target="_blank">Limitless Champions Kickstarter Campaign</a> <h1>TIMESTAMPS</h1>1:35 - Dale’s Story Behind the Project11:40 - Developing the Various Types of Miniatures14:15- Representing Your Own Experience15:55 - The Importance of Representation17:26- Understanding Someone’s World of Disability22:18 - Exposure and Lack Thereof25:50 - Connecting with People While Developing the Project29:52 - What’s Bad about Pity36:00 - The Disabled/Villan Trope39:00 - Final Thoughts The full transcript is located on the episode page at invisiblenotbroken.com. Happy listening!

Disabled Dungeons and Dragons NPC Cards & Miniatures: Dale Critchley

Monica Michelle is joined by Kathryn Trueblood. Kathryn lives with <a href="https://www.crohnscolitisfoundation.org/what-is-crohns-disease" rel="noopener noreferrer" target="_blank">Crohn’s disease</a> and <a href="https://www.mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240" rel="noopener noreferrer" target="_blank">Graves disease</a>. In this episode, Monica and Kathryn discuss: <ul><li>John Abraham’s when we decide how someone else should die we are playing god</li><li>Compassion and Choices</li><li>Covid end of life and choices</li></ul> <h1>TIMESTAMPS</h1>1:11 - Kathryn and Caretaking 4:55 - Neurological Disease and Vsed6:22- Dealing with Differing Viewpoints9:34 - Nursing Home Care11:54- Emotional Support17:28 - Making Your Own Choice21:50 - Catholic-owned Hospitals29:24 - Resources for Grief41:00 - Final Thoughts The full transcript and all links mentioned can be found on the episode page on <a href="invisiblenotbroken.com/home-chronic-illness-podcast/death-with-dignity-kathryn-trueblood" rel="noopener noreferrer" target="_blank">invisiblenotbroken.com</a> Thank you for listening.

Death with Dignity, the Right to Die: Kathryn Trueblood

The Chronic Illness Podcast Network

The podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain. "Explicitly Sick Podcast" with Monica Michelle + "[Human]care Podcast" with Eva Minkoff Be Kind. Be Gentle. Be A Bad Ass.

Invisible Not Broken - Chronic Illness Podcast Network

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