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Invisible Not Broken - Chronic Illness Podcast Network
Roundtable - Setbacks and Chronic Illness with Jason and Monica
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Monica (Explicitly Sick), Jason (Discomfort Zone)
Jason from Discomfort Zone and Monica Michelle from Explicitly Sick have an open chat about what it is like to have a setback on your chronic illness protocol. Monica Michelle who has Ehlers Danlos had a setback this week while using the Ehlers Danlos Protocol, The Muldowney Method. Jason had a set back with a knee injury. They discuss frustrations and tools to get back. Redefine what success is. How Elizabeth Gilbert's book Big Magic applies to chronic illness and disability. Why Smart Crutches are the best. Whether to financially invest in one's setback with money, time, or effort.
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Talking TV, Reading, Happiness, and Parenting with Dione Bullard
36:47Monica Michelle is once again joined by musician, chef, and activist Dione Bullard.Dione lives with End Stage Renal Disease.In this episode, Monica and Dione discuss: Favorite TV showsFavorite booksMoments of delightParentingTIMESTAMPS02:20 - Platonic11:42 - Somewhere Boy14:09 - More favorite shows21:38 - Favorite books26:17 - Appreciating moments of delight30:42 - Parenting through guided experienceSeries mentioned in this episodeAvailable on Apple TV+PlatonicSiloFoundationDickinsonAvailable on HuluSomewhere BoyThe Righteous GemstonesBewitchedAvailable on NetflixBridgertonGlamorousDAHMEROtherI Am a Virgo - Available on Prime VideoOur Flag Means Death - Available on (HBO) MaxThe Life and Times of Total Made GraceThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Adulting on Disability Income, Reflecting on Privilege and Prejudice: Cosmo
38:12Monica Michelle is joined by activist Cosmo C.Cosmo lives with porphyria, Ehlers-Danlos syndrome, and fibromyalgia.In this episode, Monica and Cosmo discuss: PetsLARPingDisability income and surviving on itPrivilege and PrejudiceTIMESTAMPS00:33 - Cats and LARPing12:05 - Adulting on disability income22:01 - Privilege and prejudice31:19 - Deadlines, speech, and steroidsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Resilience & Self-Advocacy in Health, Music, and Culinary Arts: Dione Bullard
41:42Monica Michelle is joined by musician, chef, and activist Dione Bullard.Dione lives with End Stage Renal Disease.In this episode, Monica and Dione discuss: End Stage Renal DiseaseSelf Advocacy as a PatientDion’s Music & CookingTIMESTAMPS06:17 - Dion’s diagnosis14:44 - Music career & 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 toolsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Chronic Pain, Opioid Hysteria, and Tech Tools for Advocacy: Kim Luke
41:50Monica Michelle is joined by activist Kim Luke.Kim lives with multilevel spondylosis, POTS, and fibromyalgia.In this episode, Monica and Kim discuss: Kim’s storyPain clinic negligenceDisability tech & advocacyTIMESTAMPS00:51 - 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 the episode page on invisiblenotbroken.com
Fighting for Disability in Law, in the Entertainment Industry, and in a Pandemic Society: Julia Irzyk
35:32Monica Michelle is joined by lawyer, author, comedian, and activist Julia Irzyk.Julia lives with Lupus, Osteoarthritis, Degenerative Disk Disease, and Fibromyalgia.In this episode, Monica and Julia discuss: The state of COVID-19 in 2023Julia's new book, "Disabilities and the Law, 4th Edition"The entertainment industryAccess to pain medicationTIMESTAMPS00:56 - 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 ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Charcot Marie Tooth Disease, Scoliosis, and Accessible Tech: Lisa Weiner
33:35Monica Michelle is joined by activist Lisa Weiner.Lisa lives with Charcot Marie Tooth Disease and Scoliosis.In this episode, Monica and Lisa discuss: Growing up with CMT and ScoliosisDealing with bracesLiving and moving around San Francisco with a chronic illnessFinding community resourcesDiscovering simple tools that can help with daily activitiesTIMESTAMPS0:37 - 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 ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy!
EDS Author of Floppy - Tales of a Genetic Freak of Nature at the End of the World: Alyssa Graybeal
40:28Monica Michelle is joined by award-winning author Alyssa Graybeal.Alyssa lives with Ehlers-Danlos Syndrome.In this episode, Monica and Alyssa discuss: Alyssa’s new bookMonica and Alyssa discuss being a sick kid with creativityPacing your work in a hustle-driven cultureEmergency rooms & technologyThe benefits of talking about your storyTIMESTAMPS1:10 - 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 booksThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Disabled Dungeons and Dragons NPC Cards & Miniatures: Dale Critchley
40:57Monica Michelle is joined by Dale Critchley. They discuss his revolutionary Kickstarter campaign in making disabled D&D NPC Cards and Miniatures.Dale is hard of hearing and has ADHD.Limitless Champions Kickstarter CampaignTIMESTAMPS1:35 - 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 ThoughtsThe full transcript is located on the episode page at invisiblenotbroken.com. Happy listening!
Death with Dignity, the Right to Die: Kathryn Trueblood
42:13Monica Michelle is joined by Kathryn Trueblood. Kathryn lives with Crohn’s disease and Graves disease. In this episode, Monica and Kathryn discuss: John Abraham’s when we decide how someone else should die we are playing godCompassion and ChoicesCovid end of life and choicesTIMESTAMPS1:11 - 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 ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comThank you for listening.