A Good Day with Good News
When you're a Weggie or someone dealing with Wegener's Granulomatosis good news days are like the pot of gold at the end of the rainbow, this is why I'm posting my good news day update.
I just got back from my rheumy visit in the city after my two RTX infusions. Things are definitely improving!!!! Woooo hoooo!!!
Inflamation markers are all within normal range. My liver function tests (all but one) are within normal range and the one that isn't is moving in the right direction and will be in the good zone in no time. The anemia is all but gone, everything on my lab results is looking pretty darn good. I get to taper my pred (my doc is pretty conservative - I like that) 1mg per month until I get to 10 then we'll do something different. I see her again in 3 months to start planning what we do in 6 months. Probably going to go on a maintenance drug - imuran or methotrexate. I'd prefer to see if I can be drug free, but only time will tell. My doc is so awesome - she really respects my opinion and lets me be an active participant in my healing process. I tried to get her to give me a number on how many WG patients she has treated so I could show off on here, but she didn't give me the goods - she just said "lots... lots and lots" she also said she's treated so many Weggies that she feels very comfortable with treating this disease, much moreso than treating Lupus.
I'm feeling better - I get the odd zap in my head but they are becoming fewer and fewer. I have enough energy to do some pretty physical work around the house (tiled a wall, and am redoing Hana's bedroom while she's with her grandparents in the city). I went skiing with Brian a couple days ago and pulled of 6,000 vertical feet in the fresh powder with some awesome mogul skiing.
This is one of the reasons I haven't been on the forum too much of late, I have enough energy to keep myself pretty busy so I've beein doing just that - keeping busy.
I just wanted to post this to say hi (I've had a few people from here contact me to see if everything is OK) and I'm doing great, and also to give the new members thrown into this crazy world hope that despite those first days/weeks when you can't even imagine yourself walking down the block, things get better, and although I haven't gotten back to where I was at the start, I am working hard at getting there some day.
Things would have been much more different without the support and wonderful people I've met on this forum.
Thanks to you all.... now write that book and we can publish something that'll help the newly diagnosed.
Off to build a queen size bed and figure out how to elevate it five feet off the ground. Ha ha. I'll let you know if it works - unless I get squished beneath it.
P.S. I do know that with this gig come ups and downs and right now I'm up. I know there will be many downs, but I'm totally into this last doctors visit and the current upswing.
