It’s been a while… I really do start a lot of blog posts that way. It’s a shame, because I do have a lot of thoughts percolating around up here, but life always gets in the way. Chronic illness will certainly contribute to that, you may have every intention in the world but plans are as fragile as glass.  Pain bears down on the crack and splits the once solid surface into shards, cutting and injuring all those that come into contact. We bleed as we flit from diagnosis to diagnosis. My last post was on the eve of my 40th birthday in March, andRead More →

I’m aware that I’m rare 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 →