Hey Pushing Forward,
Like the others, I'm very sorry about
what you're going through. Here is what I know...
While I rarely post, I've lurked here for a couple years. It's one of the best resources you could possibly have, both for answering questions and for the sheer power of knowing there are others out there that understand. For me, that's very comforting. With that said, when I'm in remission I rarely visit here...I live my life like every other person! Sure, there may be some foods I have to watch out for, and I've had to take a couple pills (Pred, Imuran, etc) every day, and now I'm on Remi every eight weeks...but by and large, it's all good. So just remember that (for me, at least) UC has ebs and flows...you just gotta find a doctor you trust and go along for the ride. Sometimes I can get too wrapped up on reading all the not-so-fun stuff on this board, and I need to take a step back and remember that people don't usually come back to post all of the "read about
the really cool thing I did today because I felt great!" stuff.
To address your Prednisone question, I've been on it 5 times over the last few years. The first 4 times, I had no complaints...gained a bit of weight, but if I focused on making healthy choices to fill the cravings then I could even avoid that. I typically started at 40 mg and tapered off at 5 mg a week, then 2.5 mg from 10 to nothing. However, this last time...honestly, it was awful. I started at 60 mg and just couldn't get well enough to taper, so I was on it long enough to truly experience side effects others on here have talked about
. It sucked.
That's when I went on Remi, and fingers, crossed, it's helping.
I don't really have any good advice, except...remember you're not alone. (in a good way, not a creepy-you're-being-followed kinda way!)
P.S. I just reread your post, and I want to hammer a couple points in. When I was first diagnosed, like many others, I thought my life was OVER. Five years later, I can tell you it's not...it's just different. I'm still a very active, athletic 20-something, which my doctor encourages. He usually gently makes fun of me for doing too much. And honestly, sometimes I do overdo it. I'm pretty sure I've set off my own flares at times by stressing too much about
school, my job, whatever. So I have learned to let some things go, and to listen to my body more. I think I've matured a little more than I otherwise might have at this age. I take more precautions when I travel, but I still travel several times a year, including overseas. You just have to plan more and be flexible. Also, I've become much more sympathetic towards others. And I usually eat a bit healthier than I did. All in all, I'm certainly not glad about
this whatsoever, and I'm not trying to sugarcoat things...sometimes it's lonely, sometimes (like yesterday after a treatment) I have my "why me??!?" pity party days, sometimes it's just obnoxious....but your life is FAR from over. It is what you make it.
Sorry that was so long...the tone of your post touched home and I hope at least some of it helps.
Post Edited (MollyMonster) : 12/11/2008 9:19:38 PM (GMT-7)