I’ve been sick for a while now, but I still find it amazing how quickly a pain spike (or flare) can completely knock my life out of whack.  It’s a life pared down from my past, filled with doctors and medications instead of policy, advocacy and action. I have grown accustomed to the rhythms of this chronically ill life, learned how pare back to the absolutely necessary while dealing with the daily, constant presence of pain and the symptoms of sickness. And perhaps because of pain’s sizable role in my daily life, I feel surprised when my body finds away to increase the pain andRead More →

So, after many good years with my previous blog/website provider, I have decided to plunge headfirst into the world of WordPress. The fancy new blogging area will have the same type of content and I will slowly be reposting the blogs from the beginning of 2017 until the changeover. All blogs from 2016 on backward will be housed in a separate area which is currently under construction. Thanks for your continued support! JennRead 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 →