I talked to Ryan Prior, co-director and producer of Forgotten Plague, a documentary about ME/CFS. I made Ryan hold the microphone because my arm was tired, and he wound up kind of interviewing me a bit. We talked about ME/CFS, POTS, how the two patient populations overlap, and some of the performative aspects of being a patient. I talked about living with and trying to manage POTS, quality of life, and try to answer the question posed by the MedX Studio Space of how to foster disruptive co-creation in healthcare.Read More
Friend of the podcast Abby Norman (from episode 16) and I got together to debrief about the Endometriosis Foundation of America conference we attended. We actually didn't wind up talking about it much (sorry), but we covered some of it, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue.Read More
In this week’s episode, Cara talks to Kirsten Schultz of the blog Not Standing Still’s Disease about her rare condition, Still’s Disease, and where it fits into the picture of autoimmune arthritis. They both make statements in response to last week’s Planned Parenthood attack, and they talk about growing up sick, blogging, what Kirsten hopes to do when she finishes her masters degree in Healthcare Administration, learning to be nice to ourselves, and PTSD.Read More
On this week’s episode of the podcast, In Sickness + In Health goes international! I talk to Ariane, an artist and crafter from Vancouver, Canada. She has a number of longterm, complex symptoms, but has yet to get a meaningful diagnosis. Cara describes some of the differences between the American and Canadian healthcare systems, and they talk about the challenges Ariane has faced in the Canadian system, trying to find answers to her long term symptoms, patient burnout, and figuring out how to live life beyond just coping.Read More
On this week’s episode of the podcast, Beata talks about being an adoptee with no family health history to rely on, accessible transportation, her work with the NGO Glaucoma Eyes, and getting published in an anthology of adult adoptee stories. She was born in Poland with cataracts, developed glaucoma during childhood, and is now dealing with some autoimmune issues including Hashimoto’s disease.Read More
Cara and Rebecca invite you to challenge some of what you think you know about disability, and the cultural messages we get about what a Disabled Person is. They discuss self advocacy, Rebecca's work toward better accessible transit options for Philadelphia and plans for a queer disability justice project, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end they talk about what they worry about, SSDI, and Imposter Syndrome.Read More
Cathy talks about grief (especially denial), The Spoon Theory, parenting with chronic illness, how her condition has affected her music career, and what it’s like to be “one of the lucky ones,” by having definitive disease markers in her blood. Cara makes an impassioned plea for you to get a flu shot this year, and Cathy shares two songs that she wrote while processing the grief of her illness. She lives with Rheumatoid Arthritis, Sjögren’s Syndrome, POTS, complex chronic headaches, and Interstitial Cystitis.Read More
In today’s episode, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.
Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability internalized ableism, and diversity of disability.
They live with Ehlers-Danlos Syndrome (EDS), dysautonomia including POTS, Mast Cell Activation Syndrome, gastroparesis, and several other diagnoses.Read More
In episode 02, Ilana talks about failing alternative medicine, how she manages her career, blogging and her work for Global Genes, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable, and very time consuming chronic illness.
She lives with a primary immune deficiency disease, dysautonomia, and gastroparesis.Read More
In episode 01, Lauren talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. She is the president of Dysautonomia International, a nonprofit she started in 2012, which has gone on to raise considerable funds for research in a neglected field, and hosts an annual patient-centered conference that doesn’t follow any rules. We talk about that research and the conference, and how exciting it is to get in a room with 400 other people who get it, don’t think you’re crazy, and might even share their Gatorade with you.
Lauren lives with Sjogren’s Syndrome and dysautonomia that includes Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), and Neurocardiogenic Syncope (NCS).Read More
I am SO excited to finally be able to share some of what we've been working on. We're releasing a new episode every day this week to honor Dysautonomia Awareness Month. I am SO excited to finally be able to share some of what we've been working on. We've releasing a new episode every day this week to honor Dysautonomia Awareness Month. Each of the episodes are with dysautonomia patients that have different primary diagnoses and stories to share. We looked at dysautonomia in the setting of autoimmune disease, immune deficiency, the genetic condition Ehlers-Danlos Syndrome, and Arnold Chiari Malformation, a structural defect when the brain meets the spine.areness Month. I'll be updating this post as we add the rest of the episodes.Read More
This week's episode of the Dear Friends & Family podcast includes an interview with me! The show is another podcast about chronic illness that's definitely worth checking out. I talked to Lex & Patty about my weird body and starting my own show. You can find the episode on Sticher or iTunes!Read More
Day one of Invisible Illness Awareness Week was quite a doozy. So much so that my day two has so far consisted of sleeping until 1pm and attempting to recover with lots of Gatorade, and more rest. Below is a round up of some of what I participated in yesterday.Read More
We are launching the In Sickness + In Health blog ahead of Invisible Illness Awareness Week 2015. We will be participating in #iiw15 here on the blog and on social media throughout September in the run up to the official awareness week.Read More