This thread is probably going to come off as pathetic and whiny. So I apologize for that. Only I think I needed to get these nagging thoughts off my chest, so I had to write it somewhere.
OK. So anyway, I'm kind of frustrated. Like, for the past year now, I've been flaring worse than normal, with ups and downs. But part of the reason everything is so frustrating is because I had to italicize "worse than normal" in the last sentence. I was thinking this week, I can't really remember the last time I was in a "real" remission. In other words, "normal" for me has become a state of flare rather than a state of remission. Now that I've actually been reflecting on it, I realized that I've been settling for less than remission since I was like, 13. My philosophy for dealing with this disease, and being productive in spite of it has basically been, "Suck it up and keep going. Sure, I don't feel perfect. But I still need to keep going..."
Only I'm beginning to wonder if that was the right philosophy to have all this time. For some reason, I had this idea stuck in my head for years that it was impossible to be normal. That a remission meant still being sick to some extent, and just dealing with it. But really, that's not the case, is it? I should be striving to feel as healthy as possible, and I haven't been.
Anyway, about this most recent spike in disease activity over the past year. It's been a weird ride. Last year around this time, the doc started trying to calm things down with antibiotics. Didn't work. Eventually I got sick enough that I'm pretty much the doc had me hospitalized for about a week, and put me on steroids. Which is good in high doses, but as I taper, I start to feel sick again. Also, it's pretty obvious by this point that the Remicade isn't doing its thing if I'm feeling this ill while I'm on it, and the doc decides to prescribe me Cimzia. So eventually I taper off the steroids, and I'm feeling crummy again, but crummy with restored functionality. This is me, settling for feeling less healthy than I should again, I suppose. I mean, I still feel sick, but at least I'm healthy enough to start doing stuff again. And my life goes on like this until like, the end of October. When I start to crash and burn again. I'm having a difficult time keeping up with my school work, and I'm in pain and crap. It's pretty obvious that the Cimzia isn't doing as much as it should be. The doc puts me back on steroids, and I'm back to where I was before. I spent the year going in a circle...
At my most recent appointment with my doc, I tried telling her that I don't think the Cimzia's working too great. My dad came with me, and he came right out and said in no uncertain terms, "I don't think it's done anything for you at all." And my doctor agreed. She said she didn't think it was doing much either. But she's actually added to the frustration now...She admitted that she didn't think it was doing much, but she didn't propose an alternative solution. Instead, she actually told me to start tapering off the prednisone next week. Argh. Why bother? I know that as I continue to taper off the pred, I'm gonna start feeling crummier and crummier. And then, after I've been off the pred completely long enough, I'm gonna start to crash and burn again. It's all so predictable. It's all just a farce. Why do I have to wash, rinse, and repeat to get to a point where my doc will actually do something useful? :S
And anyway, that's why I'm frustrated I guess. I've realized that I've been letting myself feel crummier than I should for entirely too long. But instead of things getting closer to that idealized remission, I'm still just walking in circles, hangin' out in limbo land. And it's annoying, because I want to actually feel healthy, entirely, rather than just going through this worse ---> mildly better ---> worse again cycle. I want to have energy to do stuff besides my school work for a while, instead of just telling myself to shut up and deal with it. And my doc doesn't seem to be doing anything to help me get there. And I guess I just don't know what to do. Or if I should bother wanting this "idealized remission". I mean, if I can function at a certain level, and I can, in fact, "shut up and deal with it," is that what I should do, or should I keep fighting to feel healthier? I guess even I don't know what I should be aiming for.
Thanks for reading all that, if you did. If you have any advice/ideas for me, I'd appreciate them.
OK. So anyway, I'm kind of frustrated. Like, for the past year now, I've been flaring worse than normal, with ups and downs. But part of the reason everything is so frustrating is because I had to italicize "worse than normal" in the last sentence. I was thinking this week, I can't really remember the last time I was in a "real" remission. In other words, "normal" for me has become a state of flare rather than a state of remission. Now that I've actually been reflecting on it, I realized that I've been settling for less than remission since I was like, 13. My philosophy for dealing with this disease, and being productive in spite of it has basically been, "Suck it up and keep going. Sure, I don't feel perfect. But I still need to keep going..."
Only I'm beginning to wonder if that was the right philosophy to have all this time. For some reason, I had this idea stuck in my head for years that it was impossible to be normal. That a remission meant still being sick to some extent, and just dealing with it. But really, that's not the case, is it? I should be striving to feel as healthy as possible, and I haven't been.
Anyway, about this most recent spike in disease activity over the past year. It's been a weird ride. Last year around this time, the doc started trying to calm things down with antibiotics. Didn't work. Eventually I got sick enough that I'm pretty much the doc had me hospitalized for about a week, and put me on steroids. Which is good in high doses, but as I taper, I start to feel sick again. Also, it's pretty obvious by this point that the Remicade isn't doing its thing if I'm feeling this ill while I'm on it, and the doc decides to prescribe me Cimzia. So eventually I taper off the steroids, and I'm feeling crummy again, but crummy with restored functionality. This is me, settling for feeling less healthy than I should again, I suppose. I mean, I still feel sick, but at least I'm healthy enough to start doing stuff again. And my life goes on like this until like, the end of October. When I start to crash and burn again. I'm having a difficult time keeping up with my school work, and I'm in pain and crap. It's pretty obvious that the Cimzia isn't doing as much as it should be. The doc puts me back on steroids, and I'm back to where I was before. I spent the year going in a circle...
At my most recent appointment with my doc, I tried telling her that I don't think the Cimzia's working too great. My dad came with me, and he came right out and said in no uncertain terms, "I don't think it's done anything for you at all." And my doctor agreed. She said she didn't think it was doing much either. But she's actually added to the frustration now...She admitted that she didn't think it was doing much, but she didn't propose an alternative solution. Instead, she actually told me to start tapering off the prednisone next week. Argh. Why bother? I know that as I continue to taper off the pred, I'm gonna start feeling crummier and crummier. And then, after I've been off the pred completely long enough, I'm gonna start to crash and burn again. It's all so predictable. It's all just a farce. Why do I have to wash, rinse, and repeat to get to a point where my doc will actually do something useful? :S
And anyway, that's why I'm frustrated I guess. I've realized that I've been letting myself feel crummier than I should for entirely too long. But instead of things getting closer to that idealized remission, I'm still just walking in circles, hangin' out in limbo land. And it's annoying, because I want to actually feel healthy, entirely, rather than just going through this worse ---> mildly better ---> worse again cycle. I want to have energy to do stuff besides my school work for a while, instead of just telling myself to shut up and deal with it. And my doc doesn't seem to be doing anything to help me get there. And I guess I just don't know what to do. Or if I should bother wanting this "idealized remission". I mean, if I can function at a certain level, and I can, in fact, "shut up and deal with it," is that what I should do, or should I keep fighting to feel healthier? I guess even I don't know what I should be aiming for.
Thanks for reading all that, if you did. If you have any advice/ideas for me, I'd appreciate them.
