Wednesday, June 6, 2007

Side Effects

Well, I've been on the budosenide for 3 weeks now, and things are not really getting better...the side effects of the steroids are *almost* overwhelming (if they were overwhelming, then I'd get off of them pronto...):

The shaky hands thing is what's really getting to me--that, and the dizziness/short of breath/if you stand up or move too fast you are going to pass out...

Shaky hands make for difficult typing. I find I have to curl my fingers under and use my knuckles for control when I am trying to use my trackball...

Dizziness makes for scary moments of the Oh-shit-I-am-going-to-pass-out variety. I find I either have to sit down abruptly (which really sucks when you're in the chicken coop!) or lean on something until the wave passes and I can move (SLOWLY!) again.

Short of breath is scary because I don't really seem to be doing all that much when I start having to gasp for air. Just talking on the phone or carrying in a load of laundry is enough to do it--I can't lift ANYTHING and this has added more reasons to why I don't drive anywhere.

Actually, the shakiness isn't just in my hands--it seems to be stemming practically from my spine and going down all my limbs. Can you say "NOT FUN!!!"?

The worst part of all this? My UC does not seem to be getting better. I'm still experiencing the urgency, the frequency, and the PAIN. I've had friends say, "Why don't you just wear Depends or something when you go out, instead of staying at home?"
Well, we're not talking about a tiny amount, here, and we're not talking about solids. I am not about to go somewhere and risk having an accident, Depends or not! Just HOW would I clean myself up in a public restroom? I can't exactly stand at the sink in my altogether, washing myself down... I would much rather stay home, near my own private facilities, thank you. Even visiting friends is scary, because what if I have to use their bathroom? It's not like a wave hits and is over--sometimes it's 10 minutes of pain and blood and spasms...then yeah, I want to go out and talk more with someone after that, right.
Frankly all I want to do after an episode is curl up into a little ball and cry...and at home, I feel free to do that.
This weekend should be interesting, since we are going to try to go to a Crohn's-Colitis Patient/Family Symposium in Sacramento on Saturday: 2 hour drive, 6 hour event, 2 hour drive back. I dunno about this...but if anyone is going to be understanding, it'll be this group of people.

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