I'm just checking in to say I'm doing all that I can to get us closer to our goal. I've sent out 6 letters and have dozens more to go. I hope that someone reading them has the same 'aha' moment I did when I read the Common Thread article by Dr. Noel R. Rose (Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD) who incidentally has agreed to help us out with our next PJ Day here in Jasper. I have invited him to be our keynote speaker in hopes that he can inspire that many more people. You have to read this to hear it from the Rose's mouth: http://www.aarda.org/common_thread.php.
Things are coming together slowly but I'm still in search for a computer wizard willing to share some of his time and aptitude for a good cause. Once I get the person, I know - KNOW, we can start making some good money that will go towards research to find the common thread, and other plans I have (none of them involving my pocket).
Physically, things are "aaaight" - I had (as well as Brian and Hana) that horrid stomach flu a week and a half ago and although not feeling violently ill since the initial bout, I have a feeling it messed things up and is hanging in on a low key sorta way. The only thing that's crappy about that (other than feeling like I have no spoons and just not very healthy) is that it can cause a flare by making the immune system be in defend mode for such a long time. I've been feeling other symptoms the last few days that are not flu related but deeper. They're nothing to write home about but give me the hibby jibbies because I so don't want to go there right now. I'm at 3mg of pred and really want to get off it for a while to let my adrenals have a little more life. So I'm keeping a watchful eye on how things progress but I'm not obsessing about it and I'm hoping that it just goes away. I'm deaf as a door knob too so maybe when it goes away it will unplug the eustachian tubes and I'll be able to hear again.
Off to write a few more letters. Wont know if I don't try.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
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