I think it's set in, all right. When I say "fatigue," I mean something that's going on with some who are close to me. When I was first diagnosed, everyone, and I mean everyone, was so supportive - asking how I was doing all the time, offering to go to appointments with me, etc.
Now...well, I guess it's like most things that go on for a long time - people get over it. Don't get me wrong - my family, Matty and many of my close friends are just as involved as they ever were and I'm so grateful. For others though, it's like the disease has just...gone away. When I announced my great news over the increased lung capacity, some were like, "Oh, great!" and that was that. I feel like I really had to explain it to them - "Um, this is kind of a big deal..." Meanwhile, I was crying and laughing and ready to celebrate (once I stopped crying, of course - kind of a downer to cry at your own celebration party)....
I suspect that part of this fatigue comes from not really understanding the disease. I can't help but think that there would be more made of, say, a cancer patient who was inching toward remission. Not to downplay other diseases, but let's face it, scleroderma doesn't get much press, though that is changing.
I know I have to accept that people have their lives to live and that The Problems of Kim aren't always going to be at the top of their minds - nor should they be. Hmmm, could this be where a scleroderma support group could be helpful? Am I coming around to the idea? Man, I hate it when I prove myself wrong!
Friday, February 29, 2008
I'm Even Breathing When I Don't Have To!
That's right - because my lung capacity has increased (drum roll, please)....by a whopping 9 percent!!!! Up from 57% to 66% - I have two-thirds capacity - woo-hoo!!
Yep, it's big news in these parts. I kept trying to ask Dr. K if these results do indeed mean that Gleevec is working "Come on, doc, just say it! Tell me it's working!" But of course, Dr. K, being a rational, science-minded sort, stopped short of saying that. He did say it's a good sign, but we have to make sure the results hold over time. Whatever! My skin score is the same and the proteinuria is still something to watch out for. Blah blah blah.... My hands are doing their curling under thing again - what? You mean you still have to do the exercises and wear the brace when you're not in physical therapy? OK, so on that one, I've been bad. Matty made me promise (a pinky promise, at that!) to get back to wearing the brace every day. Looks like we'll be battling the hand thing forever, huh?
But did I mention the increase in lung capacity??!!
Yep, it's big news in these parts. I kept trying to ask Dr. K if these results do indeed mean that Gleevec is working "Come on, doc, just say it! Tell me it's working!" But of course, Dr. K, being a rational, science-minded sort, stopped short of saying that. He did say it's a good sign, but we have to make sure the results hold over time. Whatever! My skin score is the same and the proteinuria is still something to watch out for. Blah blah blah.... My hands are doing their curling under thing again - what? You mean you still have to do the exercises and wear the brace when you're not in physical therapy? OK, so on that one, I've been bad. Matty made me promise (a pinky promise, at that!) to get back to wearing the brace every day. Looks like we'll be battling the hand thing forever, huh?
But did I mention the increase in lung capacity??!!
Monday, February 4, 2008
I Believe Tom Petty Said it Best
Something about, "the waiting is the hardest part?" After all, if I'm going to take life advice from anyone, why not an aging rock star?
I've been in kind of a holding pattern as of late - my next lung function test isn't until later this month. So I'm just dutifully going about my business and taking my meds without too much trouble. At the risk of sounding like one of those obnoxious pharma drug commercials, I have to mention - if any scleroderma patients out there are having those delightful lower GI issues, ask your doctor about the antibiotic Xifaxan. It has made all the difference.
And, I credit this lovely med with making going back to work much easier than I imagained. Oh, there's the ever-present fatigue, but that's not unexpected. It feels great to be productive again, so if I have to take an epic nap when I finish work every day, then so be it.
I am anxious to see the results of the next lung function test. I have no idea if this Gleevec stuff is working or not - my skin looks the same, my breathing feels the same, hands still hurt - all the usual cast of characters are still in place. No better, but no worse. So the deal is if I don't show improvement at this next test, I'll be taken off Gleevec and put on "something else." What that could be is anyone's guess.
I've also been doing a "24 urine" every month and the amounts of protein are increasing, but evidently still in the range of "mild." I read that the average person has about 150 mg of protein in their urine, but mine is around 400 mg. I just can't be average, can I? So it's something Dr. K is watching, but my blood pressure is always on the lower side, so I think we're still ok on the kidney front.
I've been in kind of a holding pattern as of late - my next lung function test isn't until later this month. So I'm just dutifully going about my business and taking my meds without too much trouble. At the risk of sounding like one of those obnoxious pharma drug commercials, I have to mention - if any scleroderma patients out there are having those delightful lower GI issues, ask your doctor about the antibiotic Xifaxan. It has made all the difference.
And, I credit this lovely med with making going back to work much easier than I imagained. Oh, there's the ever-present fatigue, but that's not unexpected. It feels great to be productive again, so if I have to take an epic nap when I finish work every day, then so be it.
I am anxious to see the results of the next lung function test. I have no idea if this Gleevec stuff is working or not - my skin looks the same, my breathing feels the same, hands still hurt - all the usual cast of characters are still in place. No better, but no worse. So the deal is if I don't show improvement at this next test, I'll be taken off Gleevec and put on "something else." What that could be is anyone's guess.
I've also been doing a "24 urine" every month and the amounts of protein are increasing, but evidently still in the range of "mild." I read that the average person has about 150 mg of protein in their urine, but mine is around 400 mg. I just can't be average, can I? So it's something Dr. K is watching, but my blood pressure is always on the lower side, so I think we're still ok on the kidney front.
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