Feel like you're watching an army flick with all those acronyms. Well that's what happens when you're immersed in the world of Wegener's Granulomatosis. You become acquainted with all sorts of goofy words you'd never have even considered looking up before...
The good news.... FDA has just aproved Rituximab (RTX) for the treatment of Wegener's Granulomatosis. This is great news as this powerful yet expensive drug has been one of only two 'big guns' used to get Wegener's under control when in a flare or at initial diagnosis. The other big gun is Cyclophosphamide / Cytoxin (CTX) which is a chemo drug that causes all sorts of other damage to the body. I've been on CTX for 10 months - EVERY DAY - and it sucks. It's kept me alive, but it still sucks. On that note, I finally decided to cut my hair. I lost, hmmm, I'd say about 70-75% of my hair but still had good distribution of the survivors and was holding on tight to the dream that it still looks OK. Meanwhile I was getting new growth underneath that was looking quite goofy. Soooo, I just cut all my hair to the length of the new growth and lo and behold, my new hair is CURLY.
So now I have a chunky pred face, neck, and back and short and curlies on top. Not a pretty picture to imagine, but ironically I feel much more human since the hair purging. Brian is still trying to get used to it, but all in good time.
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')
I love you new hair(s)!
ReplyDelete