Elixir of Life?

I have Crohn's. For folks who aren't familiar, it's an inflammatory condition of the digestive tract, triggered by an over active (and apparently bored) immune system. Sort of like being allergic to your own gut. Having this condition has, on occassion, sucked mightily. The first flare up that took me about six months to bounce back from and dropped a third of my weight from my frame was definitely on the unforgettable side. The second flare up where I wound up with a PICC line (central IV port) and a drain for the abcess in my hip was positively spectacular, but at least that time I got pain meds.

I'll save the gory details for the folks at www.healingwell.com's Crohn's board. This isn't a condition for the faint of heart, or the weak of stomach.

What I am going to talk about is Remicade. The stuff that's had me in bed for the better part of the day with the most spectacular case of the naps ever. I got home at one this afternoon, fell over, and woke up only because my fiance told me it was midnight and time to take my meds.

Remicade is the elixir of life, however. It's kept me flare-up free for the last four years, after every other medication only offered a modicum of normalcy and sanity. With Remicade I can go right on with my life and eat just about anything (except apples) like it's no big deal. In moderation, of course -- you'll remember my comments in "This old gray mare." I ain't what I used to be. In more ways than one.

Along with not being able to push the all nighters, I also don't live in fear of not knowing where the next bathroom is. I don't eyeball food with the scrutiny most people reserve for a pile of grubs served with pride in third world countries. I don't wake up every day wondering when it's all going to start again, and I'm going to be stuck in bed for the next six months.

I have found, though, that feeling this good has it's disadvantages. I would rather be doing things than sitting around hitched to an IV pole and a blood pressure cuff and a heart monitor for three hours every eight weeks. I know that sounds petty, but it's true. I get grumpy at the thought of going to my Remicade infusion. Three vials of liquid that are each one-third mouse antibodies (of all things), that, for the record, have to be more valuable than gold for the price, have allowed me to feel good enough to resent their presence.

Don't get me wrong. I know I'd probably be screwed without this stuff. I dodged surgery by inches during my last flare because I elected to try Remicade instead because of its track record in healing deep ulcerations and perforations and such. If I hadn't started, and stuck out seven weeks of IV nutrition (ie -- no eating), I would probably be in the cycle of flare up, recovery, possibly surgery, definitely prednisone (ewww), instead of thinking about taking the LSAT this December, pondering what my next line of work will be while I'm studying, and gearing up to clean out the apartment. Again.

And being tethered to all that equipment for three hours gives me chance to take care of all the blah-inducing administrative stuff that piles up on my desk. So I can deal with that. I genuinely like the infusion nurse and the doc that run the place. That helps. The nurse is actually a champ with the needle, too -- I never walk out of there looking like some kind of junkie with huge bruises on my arms. I usually have my Mom drive me down there, because I can never tell when the nap is gonna hit after I'm done, and I don't want to risk driving myself and winding up running into a lamp post or something. So Mom and I get to talk about all kinds of stuff, compare books and music and all that. We bring coffee or sodas, and some sort of snack, and pass the time with an occassional glance back at the IV bag.

If it weren't for the way the damn stuff makes me tired. I'm even having trouble typing this because I"m starting to fade out again already. And I schedule the appointments for Friday so I can spend the entire weekend in a stupor. By the time I finally drag myself out of it, the apartment is thrashed, it takes me an hour to clean the kitchen alone, never mind straighten everything else. And I hate facing that. I hate taking time out to sleep for that kind of extended period of time when I could be up and doing things.

I guess nothing is free. The elixir of life comes with a love-hate component that makes me phenomenally grumpy for a few days every eight weeks. I'm on a forced time out, like a zoo keeper darted me with a tranquilizer or something, whether I want it or not. For being able to lead a normal life (free of apples, thank you) the rest of the time, I sacrifice myself to a weekend in bed and the extended household clean up after.