I celebrated Rare Disease Day a bit early. Yesterday, in fact. How did I celebrate a day dedicated to raising awareness for rare diseases? By getting a weird medical procedure done, of course!
Yep, yesterday was my tilt table test. Although I had been diagnosed with dysautonomia before the tilt, this test was supposed to let me know if I needed a pacemaker or not. So I stressed, and I planned, and then… I didn’t need a pacemaker. Well, that’s not exactly right. I’m in a weird class of NCS/POTS where I could probably benefit from a pacemaker, but not enough to drop thousands of dollars on surgery. So it looks like I’m right back where I started from- being a medical zebra and utterly untreatable. Oh, and eating tons of salt.
How did you spend rare disease day?