Since you can't hear the tone in my voice I'll just clarify that there is a bit of a wishful thinking tone as I say that. I know it can get worse, it can always get worse... no matter how bad you think you have it, it can always get worse, so I try to enjoy all my moments of relative health that I am given. I am also thankful for the fact that I'm at that point in dealing with this disease where - although there will always be an element of uncertainty (moreso than the everyday life type of uncertainty) - I am getting more acquainted with the goings on with my body and how it responds to the drugs and to the disease process.
My apologies for the hiatus. It's been a crazy busy holiday season, and well, guess what... there's a little wildfire within that needs to be put out by some super expensive designer drugs - my only option. As I mentioned before RTX and CTX are the only big guns that will put this beast into remission and I've done my life's allotment of CTX so RTX it is. The positive of it - no hair loss. I now have crazy Einstein hair, too bad the brain ain't following suit.
So, I'm going in for another zap of RTX in a few days, followed by another one in a couple of weeks. There go my B cells, about to get obliterated again. I forget how it is to be completely immune compromised and the dangers that lurk everywhere when your body can't fight anything - a cut on your finger, a scratch on the roof of your mouth, a fingernail that breaks, a cold, a flu, pesky little wart virii... the list goes on and on... gotta be careful getting a massage, can't ever go for a mani or a pedi (not that I ever do that anyways). My mom asked me if she could take Hana and me to Puerto Vallarta in February and I begrudgingly have to decline as I will be completely immune compromised at that time. It's time to lock myself up in the house again for a little while (a little while has taken on a whole new meaning since I got sick).
I will be playing on my computer as energy permits and continue on our quest for the 'holy grail' of autoimmunity. I now have a Facebook group - FIND THE COMMON THREAD, as well as the site where I'll put the posters and supporting info as it gets done. There will be another interview on Global but this time it will be about the common thread gig. This will be later in January.
Take care my friends and keep it real.
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')
This bums me, Marta--big time. Keep it real, you say? Reality sucks. It is amazing, though, that you keep an eye one the distant goal. You go, girl....
ReplyDeleteAl
Ahh Al, reality is great, it's better than the alternative. I like it, it's all good and a very interesting ride. I'm not bummed about this. I was very bummed when I got the full blown flare in November 2010 - that bummed me out, a lot. This is OK, I feel like I'm on top of it too. I'm actually feeling kinda smaart about all of this as I was very on top of the situation and got the ball rolling in time to make the whole timing thing poifect.
ReplyDeleteWell, you're a better man than I. And I can definitely see you as Raven, who outsmarts the gods and gets away with it!
ReplyDeleteAl
Hi Marta, I'm praying for you. YOur attitude astounds me and truly inspires me to keep going.
ReplyDeleteYou guys are waaaay to kind.I really like the raven imagery though, kinda cool. I can work with that. ha ha ha. Candace, always always keep going, there's so much to keep going for. Never stop!
ReplyDelete