Or, “Sorry you’re sick, you’re just not sick enough.” I was having a relatively good day, and by that I mean I made it downstairs to the couch. That all changed when the mail came. It seems I have been denied for disability again. This is my second application and my first appeal. That’s three denials for those keeping score at home.* According to the Social Security Administration I am not sick enough to not have full-time employment. This may prove problematic because, as I mentioned above, my good days lately mean I can make it from my bed to my couch. Perhaps it isRead More →

I’m aware that I’m┬árare After a while you get used to it. The barely suppressed delight on the face of the newly minted intern or medical student who has only read about your condition and now sees an actual specimen in the wild. I’ve become accustomed to groups of doctors listening in on exams while steadfastly taking notes as my history is rattled off once again. My way of dealing with it is through encouragement. Hey, here I am with all of my textbook symptoms, look and learn about the seemingly unconnected set of symptoms that all add up to make-up my rare disease. AfterRead More →