Caught in a loop and frustrated

I'm hating my body right now. My friend is telling me you're not supposed to hate your body - it's what makes you who you are, defects and all (or at the least to say I hate the disease not my body but I'm feeling un-PC and ranty and want to say I HATE MY BODY.) It's defective and just because I *can't* have a new one doesn't mean I can't *want* one.

I also finally told my friend, who deals with some of the same issues but has it (mostly) under control with diet and exercise, that until he stops being stubborn and goes to a doctor and gets an official diagnosis to find out if we're dealing with at all the same thing, then he's not allowed to give me any more advice. I swear the next person who tries to give me advice based off of my generic "stomach issues" gets shown my colonoscopy pictures.


Anyway this current "hating" feeling started with trying to commit to an exercise program again to deal with the prednisone weight I've gained. Well I couldn't do it because of the prednisone-caused bruises on my feet makes it hurt too much to do any kind of aerobics I can do from my living room (usually DDR).

So I desperately want off the prednisone regardless of the effects. Well I'm tapering off and then I get sick again... and I think, "I can't live like this, not being able to have a life, not being able to make plans whether it's next week or next year." In the future, in my head, I'm all cured and having a normal life (starting a business, going to school, raising a family) but I don't know what happens between now and then to make it happen.

And it's not that I was all better *on* the prednisone, so it's not a choice between being normal with side effects or sick without them.

So I think, I just want whatever will make me *normal*. My doctor said the next step if the Imuran didn't work would be the Remicade infusions. So I start researching that and wonder, is it worth the risk of cancer in 20-30-40 years?

And then I think, well maybe I just need to accept that I'm doomed to a shortened life span and know to make the most of my time. Oh, but how do I do that when I'm sick???


And the thing is, the point I'm at I'm sure some people on this forum would love to be at. I feel guilty for wanting more, to be *normal*. I've never been hospitalized, I can hold down a job, but there are some days where making it out to get lunch is an achievement. If I can't get better, then I almost wish I'd be worse to justify just taking it out...