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!
Subscribe to:
Post Comments (Atom)
8 comments:
Yo! I just caught up on all the blogs. Hooray for you! Going back to work and increasing lung capacity. I know you are going to lick this thing (well not literally-but you know what I mean)! About "fatigue" it may be just living in SoCal - people are so self-absorbed and don't intentionally seem to be uninterested. I feel like that a little bit when I talk about Jacob with some folks who don't have kids - its something you don't understand until its your experience. Maybe its not the same thing, but I know I was that way when I lived there. Just know that I am always thinking of you, even when I go through my silent periods - just busy is all - take care and say hi to Matt. In many ways you are a very lucky woman, keep focusing in that. Ciao for now!
it's times like these when i wish i lived down the street. that, and any time i start thinking about oceans. or matt's ability to throw down in the kitchen. or...you know.
Shannon
I love you!! xoxoxox
Hey! When I realized I wouldn't be able to make your birthday party, it occured to me that I didn't know how you were progressing - or if you were progressing at all. "Well ding-a-ling, check her blog!" I've seen you twice in the past several weeks, and you make scleroderma look like a cake walk: That's all some folks need to justify "getting over it." Here's to continued increasing lung capacity.
La Von
Hi Kimber Lee,
I also have scleroderma and I found your blog. I wanted to leave you a note of encouragement and hope. If you ever need any one to email who understands the ups and downs, and the mysteries of sclero email me!
Hope you are well!
I am so excited that your lungs have improved! Hurray for you! Not many people can say the same. I hope you feel better to and the fatigue is less of an issue. I hate living my life around when I can go to bed next. It is a misearable feeling to never feel "chipper". I am planning to start the Gleevec trial in NYC. Any words of advice? Plse. email me with any suggestions or comments. Thanks for the help. Gidget
Gidget,
Good luck with Gleevec!
What really helped me was taking the meds at night and trying to keep a little food in my tummy. When I did feel nausea, it would subside in about 2 hours, so hang in there. I don't notice it at all now! Not sure how to reach you over email, but you can email me at kimber311@hotmail.com
We're still here for you if you need us. I know personally I have taken the road of trying not to remind you so much of how you are doing and I hope you know that doesn't mean I am not still worrying about you. Not that NOT talking about it makes it go away, but I want you to know that you are still the same Kim to me as you were before you were diagnosed and I am trying to bring some normalcy to a situation that is anything but normal. We are always here if you need us. :)
Post a Comment