So I'm back at work and it's awesome. I love the energy of the people I work with despite the fact that I'm working from home. Still a little germ shy with all the insane drugs in my body. I've been feeling a little off lately but I'm hoping that it's germ related and not antibody related. I went for a blood test yesterday and will see what the results are today. If anything is strange I will call my super doc and see if another RTX is a wise step. What I'm really really really not interested in is letting something go too far so that I have to start the fight from scratch again. I'm on 9mg of pred and not even remotely interested in going up on that evil, life saving grossness.
Things are looking like I might end up on TV spreading the word of Wegener's. Nothing is final until it's final - an important lesson I've learned sportin' this disease (amongst a myriad of other lessons) but it's looking like it's a go thus far. If / when it happens I'll post a link of me looking like a fool.
Take care my friends and remember to only sweat the big stuff, the good stuff, the important stuff.... the little stuff is just that - little.
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')
Friday, October 28, 2011
Tuesday, October 11, 2011
I owe, I owe, it's off to work I go....
Well, tomorrow is that day. The first day back at work since all of this started. I'm going back part time to start and working from home to ensure that cubicle land doesn't get the best of my compromised immune system, but I still feel a bit like a kid on the night before their first day back at school.
Don't know if you know that feeling... the one where you're feeling like your body is putting on a brave face and is all calm and cool on the outside but inside there is this twang, this subtle but overwhelming vibration that's making you question yourself.
I'm excited to be at that point in this ride where things are getting more and more like life before Wegener's, but as I said in an earlier post always a little afraid that I might jinx the whole thing and fall back into the vortex. That's one vortex I'm so not into falling back into. I look forward to seeing all the wonderful peeps I work-ed with and to see what kind of trouble I can stir up at work (that's my nature if you haven't noticed yet - wa ha ha ha).
It was a year ago now that I went and got my first flu shot (second H1N1 shot - which was combined with the regular flu shot) and ended up with a full on flare in the hospital getting pumped up with insane amounts of steroids. So I scoff at all the signs around town encouraging people to get a flu shot. Apparently they have the H1N1 in there again this season, and I'm not interested in another hospital visit and setback that takes a year to get a handle on. Just before going to Hawaii, my blood work was the BEST it's been since this all started. Everything on there was within normal range. Two weeks ago I went and all of my liver function tests were quite elevated again... total bummer. I went again today - two weeks early - to get another blood test and see if I'm trending or if it was just a blip. I'm hoping for the latter. Will know tomorrow. So tomorrow is a big day in more than one ways. Guess I should go to sleep now and get ready.
Nighty night y'all. Remember to enjoy all of the little wonderful things life has to offer. They truly are beautiful and make the things we worry about seem quite insignificant.
Peace.
Don't know if you know that feeling... the one where you're feeling like your body is putting on a brave face and is all calm and cool on the outside but inside there is this twang, this subtle but overwhelming vibration that's making you question yourself.
I'm excited to be at that point in this ride where things are getting more and more like life before Wegener's, but as I said in an earlier post always a little afraid that I might jinx the whole thing and fall back into the vortex. That's one vortex I'm so not into falling back into. I look forward to seeing all the wonderful peeps I work-ed with and to see what kind of trouble I can stir up at work (that's my nature if you haven't noticed yet - wa ha ha ha).
It was a year ago now that I went and got my first flu shot (second H1N1 shot - which was combined with the regular flu shot) and ended up with a full on flare in the hospital getting pumped up with insane amounts of steroids. So I scoff at all the signs around town encouraging people to get a flu shot. Apparently they have the H1N1 in there again this season, and I'm not interested in another hospital visit and setback that takes a year to get a handle on. Just before going to Hawaii, my blood work was the BEST it's been since this all started. Everything on there was within normal range. Two weeks ago I went and all of my liver function tests were quite elevated again... total bummer. I went again today - two weeks early - to get another blood test and see if I'm trending or if it was just a blip. I'm hoping for the latter. Will know tomorrow. So tomorrow is a big day in more than one ways. Guess I should go to sleep now and get ready.
Nighty night y'all. Remember to enjoy all of the little wonderful things life has to offer. They truly are beautiful and make the things we worry about seem quite insignificant.
Peace.
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