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
This week’s episode is one to honor Ehlers-Danlos Syndrome Awareness Month, as well as many of the other poorly understood, under-diagnosed conditions that disproportionately affect women, which share May as an awareness month. This episode is actually a re-run of my interview with Rebecca from episode 03, but with an updated introduction and new links on the episode page.Read More
Below is a list of links to organizations close to my heart, that I recommend giving to this #GivingTuesday. You can also find many more organization on our Resources page. Of course, if you wanted to make a NON tax deductible contribution to something you can always give to In Sickness + In Health! You can also help us out without money by rating and reviewing us on iTunes, which helps other people find the show, and helping spread the word by telling people you know about us and sharing the show on social media.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 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
One of the challenges of living with complex chronic illness is that when one thing goes wrong, an avalanche of problems is soon to follow. At least that's been my experience, just about every single time I get what I call "regular people sick." This includes things like colds, the flu, sinus infections, and my recent nemesis, the stomach virus. A stomach virus that showed up just in time to help my dysautonomia make me very aware of it for Dysautonomia Awareness Month, and the two year anniversary of a medical procedure that was supposed to be simple and routine, but turned out to be anything but routine and simple.Read More
I spend a lot of my time encouraging my loved ones and others to take their health and their symptoms seriously. Sadly, I have a really hard time taking my own advice. Two weeks ago I started experiencing a lot of disruptive GI symptoms that I attributed to increased stress. By this weekend those symptoms hadn't stopped, and I still didn't really do anything about it. I resolved to continue ignoring it so I could attend a conference in Philadelphia that I had bought a ticket to and booked accommodations for at a time when I was feeling much better than I have been for the last few weeks.Read More
Unfortunately, a lot of people still have never heard of dysautonomia, or the various conditions that fall under its umbrella. Dysautonomia is a blanket term that covers conditions resulting in autonomic dysfunction. Your Autonomic Nervous System is responsible for a lot of the things that are supposed to happen in your body automatically; things like your heart rate, blood pressure, body temperature, sending your blood to where your body needs it the most at any given time, and can affect just about any system in the body. For many with autonomic disorders, it can make the simple act of standing up a very dangerous game.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