RSDmom,

I'm glad your daughter has such good treatment. But I have to comment on what you said. Do you really believe that RSD takes away all hope of doing what one wants to do? I agree that it takes away unlimited possibilities, but in reality, I have to believe that we're all limited in some ways (I think it's safe to say that I was never destined to be a mathematitician).

Back in the day (when I was in high school, 5 years ago), I guess I sort of felt like I didn't have may possibilities in life. But lately (as in, after HS), I've realized that RSD hasn't taken very many options away in reality. When you're in HS, all of the little things like not being able to participate in sports or not going to dances actually matter. After HS, they really don't. It sucks to not get that experience, which is a valuable part of development and growing up. But in the long run, I don't think I've been too negatively impacted by spending prom in the hospital. It may be painful to not have a boyfriend while in HS, but I think that you can probably agree that once you're on the other side of graduation, it isn't such a big deal.

Really, I think that although some of my options have been taken away, I still have many left. Had I never gotten RSD, I might have majored in violin performance. Instead, I'm playing at a much lower level, and I'll never have that opportunity. It does hurt, sometimes quite a lot, when I'm reminded that I'm struggling with pieces that I otherwise might have mastered during middle school. However, I've found other things that interest me, and I will someday be something of a professional musician (I hope)...but a vocalist instead of a violinist.

I really think that RSD has made me change what I must do with my life, but it certainly hasn't stopped me from having a life. I would have been much happier had this all been easy, but I think I've had to learn to be a little more flexible, which isn't necessarily a bad thing. Because I got this at a young age, I've learned my limitations and my capabilities, and I have learned to work within those boundries.

There's really no good age to get any debilitating illness. If you're young, maybe you can learn to cope and work around the disease before starting life on your own. But you miss out on childhood and so much of the great stuff of being young. I'm STILL not caught up with my "typical" peers in terms of some life experience, and I'm lightyears ahead of them in terms of others.

I'm sure that, like everything else, this is a different process for everyone. I've had RSD for more than half of my life. It's been better, it's been worse. Right now, I'm able to function fairly well. In my darkest days, I never considered the possibility that this would derail my entire future. I just needed to pick my future carefully.

So I guess what I'm trying to say is that with accomodations, careful planning and a lot of perseverance, kids with RSD can do a lot of things. Maybe not anything...I would never consider being a professional athlete or anything. We just need to figure out what we CAN do, what we WANT to do, and then try to match up some of those possibilities.

As for my comment about not being set in life, I guess it's kind of that RSD has forced me to take different paths in life. To further this metaphor, I feel that it's easier to see and turn off on those different paths if you're not already cruising on the main highway when the big construction sign comes up. To take the metaphor to a somewhat ridiculous degree, the smaller paths often take longer and are bumpy, but will hopefully eventually get us to where we want to go.

-Betsy