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
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
On this week's episode of Dear Sugar Radio, "When Bad Things Happen," Cheryl and Steve answer two letters from people facing scary diagnoses: an artist and graphic designer, dealing with Major Depression, and facing the loss of his sight after a diagnosis of Glaucoma; and the mother of a little girl, born with a congenital heart defect and facing a lifetime of health and accessibility challenges, while also dealing with her husband's recent Bipolar Disorder diagnosis, and her own diagnostic journey with a recently discovered spinal lesion. Read More