Tag Archives: auto immune

I know, you thought I was an athlete, right?

19 Wednesday Oct 2011

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I wasn’t very athletic when I grew up.  In fact, the whole P.E. thing alarmed me when I started Junior High School and discovered that we had to actually shower in front of each other. I mean, I never got naked in front of my own family, why would people think that its okay to get naked in front of girls from your math or choir class?

And then I felt like I got the coveted Willie Wonka golden ticket–the doctor’s note excusing me from P.E.  I had bad knees that seemed to dislocate just by turning left.  Or right.  It was both knees and after suffering a dislocated knee during line soccer and three knee operations later, there was just too much paperwork for the school administration to have to go through every time it happened that they welcomed the doctor note.

So all during Junior High and High School I took other electives like calligraphy or jewelry making or movie making and relished in the fact that I didn’t have to get naked in public.

Once I entered college, though, I decided to look at all the various options for physical education (mostly because I had to in order to graduate).  I tried dance aerobics, tennis and swimming.  All the girls in dance aerobics apparently were ex-high school cheerleaders and I felt like the biggest dork.  They all seemed to already know about quick-ball change and v-steps and the ol’ standard, grapevine. This was all new to me.  They never taught this in calligraphy class.   Tennis made me feel worse.  (“You  mean I have to run after the ball?  What kind of game is this?”) At least with swimming I started to get a little confidence. Especially when I was able to do the butterfly.  (I rocked!) Since then I took that confidence and discovered step aerobics, kick boxing, weight lifting, spinning, hiking,

Fast forward to now.  I now feel like I did when I was in junior high where I got the golden ticket excuse to get out of P.E. But it’s not the kind of note I want.  Having an auto immune chronic illness means I have to make sure that I’m exercising, but sometimes the fatigue just takes over.

The best way to describe it is this way:  It’s like moving in cement.

But tonight I felt a little normal again.  After a long day at work my super duper supportive husband went to the gym with me tonight and we attended our weight lifting class and then I stayed for the Zumba class.  I just love Zumba!  It’s the one class where even if I am moving in cement I can still move. It’s freeing and fun.  I feel like I’m able to open up it kind of makes me feel young again. There are all shapes and sizes in the class, not to mention ages. It’s fun and such a stress release for me  In fact, my husband goes nearly every time with me and that’s a great example of the kind of support he gives me. And I think he has fun too.

I was thinking tonight during the Zumba class that it doesn’t matter that I can’t move like I used to.  I’m just so glad I’m moving.  It seems like I started out my teenage years not caring about P.E., but now that I need to move I’m grateful for the days when I can. And tonight I could and had a blast.

 

 

 

 

Ugh. I’m chronic.

04 Tuesday Oct 2011

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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.