Invisible Not Broken - Chronic Illness Podcast Network
Disabled Tech Reviews: Best Car to Buy for Wheelchair Users
Note: This is my opinion only. I have Ehlers-Danlos, POTS, MCAD, and Fibromyalgia.If you just want a quick answer: Subaru Outback 2023Hi everyone!Welcome to the new series: Disabled Tech ReviewsThe list of “special” and “luxury” items are not so for those of us in chronic pain. I have a budget that for my personal sit-in gets laughed out of existence.The general list used to be:SafetyMPGEnough space for kidsA CD playerAh, the simple life that at the time I thought was untenable. Now with Ehlers dances so advanced I must at the very least have my power wheelchair available I have found sedans are just crossed off the list. They might have the ability with a master’s thesis in Jenga to be able to fit the wheelchair but even if this was possible my cane will not fit as well in case I have a wild flight of optimism that I might be able to walk. Those of you in the know please feel free to roll your eyes or laugh the knowing laugh of those of us who will absolutely have the cause of death written optimism she knew better but thought she could anyway.Ok so even without the wheelchair I might have the body of a middle age woman but my ligaments are more that fossilized posits not you found at the bottom of a bag covered in debris. What I am saying is sedans are low to the ground. Getting in and out of them is my Everest.So sedans and sports cars are out. Minivans while intriguing do not have the space without a massive amount of engineering. Trucks! I LOVE trucks I have wanted one my entire life but the securing in the bed and walking around let’s just say I was too worn out after a quick try to even think of driving. But the electric trucks have frunks! Ah yes, the frunk. I LOVE the lightning. The F150 is the car I dream of as I remember the boys in high school dreamed of having a Lamborghini, and for the cost, it is just as likely I will ever own one. If you can afford it please let me know how amazing it is as a wheelchair user. I promise no dark jealous thoughts will be cast your way only slightly simmering resentment.So an SUV it is. This should not have been limiting but let me give you my list if I am ever to consider driving:SafetySpace for wheelchair, child, canes, GIANT BEASTIE wolf, a small but active hamster disguised as a pug, and groceriesA door that opens wide enough I do not have to pivotBlind spot AI to help me stop if my leg seizes and lane departure warning. Basically, any safety feature that will save me if my body decides to just not (this is where luxury gets redefined. I have no issue paying extra for sunroofs, seat material, or sound systems. These are in fact LUXURY. Back in the day, Volvo invented a 3-point seat belt. It saves lives. They gave the plans away. For safety. The ability to survive should not be a luxury. This is my hill it has a pre-dug grave and a soap box I am not moving from it.)This started with plug-ins or PHEV there were 3 on the market I wanted none to exist in real life despite the company’s best advertising efforts. Thank you all. We probably won’t be on the cutting edge of any tech but we will do our best to review what we have to make our lives as autonomous as possible from kids care (fluff feather and human) to feeding yourself, to self-care apps, to VR, to the tech we use to run Invisible Not Broken. Please feel free to reach out.Head over to www.invisiblenotbroken.com for more podcasts and blogs about life while disabled.Remember to Be Kind. Be Gentle. And of course, be a Bad Ass.
Interview With Social Security Disability Revealed: Why it’s so hard to access benefits and what you can do about it. Author Spencer Bishins
Interview With Social Security Disability Why It Is So Hard to Access Benefits Author Spencer Bishins
Noah: Spina Bifida* Reading & Empathy* New House ADA* Airlines & Wheelchairs
Noah: Spina Bifida*Scifi Fantasy & Escape* Reading & Empathy* New House ADA* Airlines & Wheelchairs Noah and I chat about some of my favorite topics from airlines and wheelchairs* Dr Who and other sci fi shows and how they handle disability* Universal Design * School and disabled Access * Reading Fiction and Building EmpathyInvisible Not Broken is a chronic illness and disability podcast Invisible Not Broken with Monica MichellePlease share with friends and your community Subscribe to our newsletter and the podcastName*Noah MussayPronounshe/himWebsite and handles you want published*@NoahMussay (Twitter), @JulieWestEvents (Twitter I run for work)What is the name of your disorder, When did it present?Spina Bifida. It presented fairly early in my mom's pregnancy, so I was born with it. I also have Arnold Chiari Malformation, hydrocephalus, and scoliosis.What do you want people to know about your daily life?My daily life is relatively unextraordinary. I work. I play video games, I read, and I obsess over Big Brother and Doctor Who. My disability does affect my daily life, and I definitely worry about how I will deal with the struggles it presents when I'm on my own, but I genuinely like my life.What frightens you?I'm frightened by the fact that there are bigger hurdles that I have to face as a disabled person, and although I have a great support system, I sometims fear that I can't rely on myself for that support, and I don't have the benefit of hindsight to know that I can make it work on my own.What is your favorite purchase under $100Mobility aid: My grabber, which I use to grab things that fall or are too high. Less serious answer: Last summer, I purchased an audiobook, which is an in-depth analysis of Season 3 of Big Brother.Anything you want to cover or promote?I definitely think talking about my adoescence would be interesting. I was never an outgoing child, but I had friends in elementary school. Then, in fifth grade, I had a medical situation arise that made it, so I had to be pulled out of school for the rest of the year. When I got returned to school the following year, I felt different and closed off, and it became very hard for me to make friends, and I became a bit resentful that nobody seemed to want to be my friend. It made for a very isolating middle school through high school experience.
A Conversation With Cosmo: Autism, Porphyria, Long Haul Covid, Media & Disability, & More
A FEW THINGS WE TALK ABOUT IN THE EPISODECONTENT WARNING: WE DISCUSS RIGHT TO DIE ON THIS EPISODE. IF YOU ARE ANYONE YOU KNOW NEED HELP PLEASE REACH OUT TO THE CALL THE NATIONAL SUICIDE PREVENTION LIFELINE1-800-273-8255ORTEXT GO TO 741741 TO REACH A TRAINED CRISIS COUNSELOR THROUGH CRISIS TEXT LINE, A GLOBAL NOT-FOR-PROFIT ORGANIZATION. FREE, 24/7, CONFIDENTIAL.NEURODIVERGENCE AUTISM AND ADDGAMING AND CHRONIC ILLNESSUS HEALTH POLICIES INHIBITED BY LEADERS IMAGINATIONS AND BOWING TO TEMPER TANTRUMSPROBLEMS WITH SOME DISABILITY GROUPS & NON PROFITSWHO CAN TELL WHO’S STORY COMEDY, CANCELLING, AND SERIOUSLY STEPHEN KING WHY WON’T MY BREATS POUT?SHARED HIGHSCHOOL TRAUMAWHAT ALL OF US STAY AT HOME DISABLED PEOPLE DO ALL DAYLONG COVID PATIENTS AND THE ADJUSTMENT PERIOD OF CHRONIC ILLNESSDISABILITY AND FRIENDSHIPSWHY HOLD MUSIC SHOULD BE BANNED FOR MENTAL HEALTH.Name*Cosmo CPronounsFey/FemWebsite and handles you want published*Twitter: @MaelstromMinded Twitch: @TheMaelstromMindWhat is the name of your disorder, When did it present?Acute Hepatic Porphyria (Variegate Porphyria, 14) Fibromyalgia (14) CPTSD (very young but unsure) Dissociative Identity Disorder (8-9, but realized it at 18) Endometriosis (13) PCOS (13) POTS (14) Autism and ADHD (Figured those out at 22 and 28) EDS (birth) I may have forgotten some
Laura Mustard: VATER Syndrome Singing Through It COVID and Performance Art Disability and the Media
Invisible Not Broken is back with singer songwriter Laura Mustard!We talk art, writing, and music with chronic illness and disabilityCute Dogs Artists Supporting ArtistsDisability in the mediaWhy starving artist is a privilege issueRereading old journals the trauma and the content miningwww.lauramustard.com https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard https://twitter.com/mustardlaura @mustardlaura DISORDER INFORMATIONWhat is your disorder?VATER Association and Latex AllergyAt what age did your disorder present?Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over timeWhat was your life like before your disorder?It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy
Roundtable - Setbacks and Chronic Illness with Jason and Monica
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._____PLEASE SHARE 😍 RATE & REVIEW 👍DON’T FORGET TO LISTEN & SUBSCRIBE TO EACH OF OUR PODCASTS :EXPLICITLY SICK WITH MONICAHUMANCARE WITH EVADISCOMFORT ZONE WITH JASONSEX AND CHRONIC ILLNESS WITH DR. LEECHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!@HUMANCARE_PODCAST@DRLEEPHILLIPS@DZONEPODCAST@EXPLICITLYSICK@INVISIBLENOTBROKENBE KIND. BE GENTLE. BE BADASS.
Roundtable - Ableism (Part 1) with Monica, Eva and Jason
Ableism comes in all shapes and sizes AND we experience it both internally and externally. Monica (Explicitly Sick), Eva (Humancare), and Jason (Discomfort Zone) talk about how they have experienced and dealt with ableism personally as well as give advice on what could work for others…plus other stuff around chronic illness and crap :pTRANSCRIPT HERE (it's not fab, but hopefully it does the job, sorry!)Finding the people that won't tell you you're crazyAll about mobility aids and our perceptions of them vs. the perception of othersgadgets that help us (ex: reMarkable tablet - not a paid promo, just love it!)“Do I deserve this?” - what we ask when we spend money on ourselvesGaslighting Travel adaptationsAbleism in healthcareEquitable vs. Fair (“everyone gets the same” vs. “everyone gets what’s needed”)3 last pieces of advice (1 hour in)“Taking care of yourself is not losing ground ex) if you decide you need a wheelchair, you are not taking a step back, you are not losing power. I wish someone told me that a decade ago” - Monica“Battle ableism first starts with how you receive things yourself. there is a lot you can do internally that will help you battle that in your outside world.” - Eva“Gaslighting is tough - especially with family and personal relationships. There are certain times when it can be really intense, and at times you need to give yourself distance from that person… it may be the right decision to cut them out of your life… [at the same time] it’s often people who are incredibly well-intentioned and good people…so take that into consideration.” - JasonStay tunes for Ableism - Part 2! (Which will include Dr. Lee)How have you experienced ableism - internally and externally? Let us know what works for you in our Facebook Group!**ALSO, BIG ANNOUNCEMENT!Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at firstname.lastname@example.org with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence._____PLEASE SHARE 😍 RATE & REVIEW 👍DON’T FORGET TO LISTEN & SUBSCRIBE TO EACH OF OUR PODCASTS :EXPLICITLY SICK WITH MONICAHUMANCARE WITH EVADISCOMFORT ZONE WITH JASONSEX AND CHRONIC ILLNESS WITH DR. LEECHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!@HUMANCARE_PODCAST@DRLEEPHILLIPS@DZONEPODCAST@EXPLICITLYSICK@INVISIBLENOTBROKENBE KIND. BE GENTLE. BE BADASS.
Roundtable: Weathering the Storm with Monica and Jason
Chronic illness is a marathon and not a sprint! Monica (Explicitly Sick) and Jason (Discomfort Zone) talk about how they cope with chronic illness and other life bullshit:Finding the people that won't tell you you're crazyPets that both comfort and injure MonicaMeditating when you can't sit stillDenial! YES, denial is a perfectly legitimate coping response, and never let anyone tell you otherwise :)Do you have coping strategies that you'd like to share? Let us know what works for you in our Facebook Group!**ALSO, BIG ANNOUNCEMENT: Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at email@example.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence._____PLEASE SHARE 😍 RATE & REVIEW 👍DON’T FORGET TO LISTEN & SUBSCRIBE TO EACH OF OUR PODCASTS :EXPLICITLY SICK WITH MONICAHUMANCARE WITH EVADISCOMFORT ZONE WITH JASONSEX AND CHRONIC ILLNESS WITH DR. LEECHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!@HUMANCARE_PODCAST@DRLEEPHILLIPS@DZONEPODCAST@EXPLICITLYSICK@INVISIBLENOTBROKENBE KIND. BE GENTLE. BE BADASS.
Announcement from HumanCare: Call for stories!
Hello Humancare community. I have a very special announcement. I am finally launching a new collaborative segment of the podcast, a project I've been dreaming of putting out there for years now, and it requires your participation to come to life: Humancare Stories. An awareness and conflict resolution project. The Humancare Stories segment will be a collection of anonymously contributed stories from listeners like you, about negative interactions experienced within the context of healthcare – whether that be an interaction with a patient, provider, loved one, or stranger. For example, submitted stories could be about a disheartening dialogue with a doctor, an offensive conversation with a romantic partner, or even an infuriating exchange with someone in a waiting room. Essentially any person-to-person interaction related to one’s health journey. After the submission of a story through voice recording, these stories are validated and dissected before being published on the Humancare podcast. (All submissions, will be reviewed although only a select few stories will be chosen to be published.) For those that are, these episodes will begin by playing the original recording of the story. Then as the host, I will analyze “what happened” from both a factual and experiential viewpoint. From there, I will present to you, the listeners, thought-provoking reflection questions paired with insights from a board of advocates, as well as tools and suggested resources – all of which aim to stimulate a potentially different way of looking at the story told that best serves both parties involved. The purpose is to be both supportive and proactive. It isn’t about choosing sides. It isn’t about being right or wrong.It’s about shedding the labels. It’s about removing the ego. It's about seeing one’s self as human, seeing that other person as human – as awful as the interaction may have been - and finding a common ground as two humans. I am looking to encourage listeners, like you, to adopt tools to mentally, emotionally and physically prepare you for similar situations in your lives going forward. I hope to provide you with alternative options in terms of actions and reactions so that you can feel a greater sense of control going forward. I believe that if we individually shift our approach to these often angering, upsetting, frustrating interactions, that we can collectively and collaboratively shift the broken relationship dynamics within healthcare as a whole. Again, it isn’t about choosing sides. It isn’t about blame or shame. No one wins in these interactions. No one. The way we approach these difficult conversations need to change.You know it. I know it. We all know it. At the end of the day, relationships in the context of healthcare are between two humans just like any relationship. And that’s ultimately the purpose of this project: to humanize healthcare first through humanizing our stories.If you are open to sharing your story with the community, text “I want to share my story” to 585-484-0232. From there I will send you the submission requirements. While I will need to be in contact with you to receive your recording, all stories will be published anonymously. Thanks again for being supporters of the Humancare podcast and our mission to humanize healthcare.