auto immune, autoimmune, chronic illness, gastroenterology, humor, Raynaud's Syndrome, rheumatologist, scleroderma
After giving it much thought, I’m going to come out of the proverbial closet on this one.
I have a chronic illness.
There are a few reasons why I originally didn’t want to “come out” on this one. First of all, there’s the whole privacy issue with one’s own health care. Do I want people to know that something is wrong? What if my employer used this against me? What if people looked at me differently? What if it kept me from achieving something I really wanted because I was held back by someone else?
The other reason for maybe not going public was that I didn’t want to become depressing. Not just for readers but for myself too. I’m not judging those who find therapy in the Internet, but it’s not my approach on how I want to manage my own situation. I often have to give myself a break from the Internet–mostly when I’m hunting for solutions–because often times the people who are suffering the most tend to also be looking for answers and frequently post some of the saddest conditions. There’s a lot of hopeless folks out there who seem to be facing many challenges. It can be very depressing for those going through it and for those looking for answers.
Should I be acerbic? I might be, but I don’t think that’s going to be my approach. Should I be funny about it? Hmmm, I might laugh at something now and then, but not everything is funny. Sometimes it’s just plain annoying, inconvenient, and downright frustrating. Should I be a grassroots advocate for change or research or try to get people to pay attention to a rare condition? Oh, I wish I could. But with a very hectic corporate job with oodles of responsibilities, for now all I can do is keep up with that and make sure I’m staying on top of my own health, which requires consistent exercising at the gym. For now, I’ll have to find other ways to champion the cause.
What I do know is that this blog isn’t going to be all about my illness. I don’t think readers can bear that and I know I can’t. Part of living with a chronic illness is the living part. I’d rather focus on the other parts of my life that bring me joy. For now, this chronic illness that I have is forcing me to make decisions–about how I do things and when I do them as well as how much I do them. But I can still do them for now. And I’d rather try to find work-arounds rather than spin my head out of control by focusing everything in my life around the illness.
So, in case you’re wondering, I don’t have lupus. (Remember, in an earlier post, I mentioned that I was misdiagnosed four 1/2 years ago.) Most people’s reaction when I tell them that is “Wow! That’s great news!” While that’s great news, I just traded one disease for another. The official diagnosis I have is scleroderma. It’s part of the auto immune family and fortunately, it hasn’t impacted my organs at this point. And it just may not. We suspect that I’ve had it for about five years now and usually if the organs are involved that gets manifested in those first five years. But the doctor did inform me, “never say never.” Yes, there’s always a disclaimer.
Where do I go from here? Well, there’s no cure — just managing the symptoms. I can’t really play piano like I used to–it’s been that way for the last four years. Most of this has been manifested in my hands, which are puffy and swollen most of the time. (When my rheumatologist delivered the diagnosis news he said, “Well, you’ve been dealt a bad hand,” to which I replied. “So to speak.” See? There are appropriate times to be humorous, no?)
We’ve finally got me on some medication to manage the Reynaud’s Syndrome, and that’s been a blessing. And I am now pleased with my new rheumatologist and next month I’m seeing a gastroenterologist for consultation on other issues related to the disease. I’m keeping my fingers crossed that he’ll have some more solutions for me as well. (Oh duh. I can’t cross my fingers–too swollen. Ha! More scleroderma humor!)
So why write about it? Why am I not being private about it? Because keeping it a secret just adds to my stress. I’m not ashamed about it and besides, maybe there’s someone out there who might identify with what I’m going through.
I mean, for Pete’s sake, I’m over 40. I was bound to have something happen to me.
I think it must be a relief to speak honestly about your health issues. Best wishes.
Thanks! Yes, relief. Now onto the rest of my life….
Amanda Mamie Saranthus said:
I will keep you in my prayers!
I love your sense of humor. I too should really find that because I stay “down” alot with my face glued to medical research of my own.
Thanks for sharing your story. Best of Wishes
Thanks for your note, Amanda. I know what you’re saying about having your face glued to medical research. I, myself, am a self-proclaimed “cybercondriac.” I once asked my primary doc if she hated it when her pts. were always surfing the web, researching. She surprised me when she said, “no.” She went on to explain to me that she felt that when her pts came in prepared by doing homework they had much better conversations.
Feel free to subscribe to my blog. I promise I won’t be depressing.