I haven’t really written much about the whole Crohn’s thing lately because I’m seemingly “in remission” which is such a loaded term to use, but that’s what they call it. And I have been for awhile, thanks to sitting in a mostly-comfy chair for 2-3 hours every six weeks, hooked up to a machine, dripping anti-TNF drugs into my arm while I, usually, type away and work at my laptop.
There are much worse things to have, but dealing with Crohn’s has completely changed my outlook on life in so many ways. Or maybe I should say it solidified certain beliefs and pushed me farther and faster toward others. Losing my dad during my freshman year of college did that as well, maybe more so in some ways, but there’s a difference between the way an 18-year-old deals with things and the way a 30-something does (and I say that not to obfuscate my age – 36 – but because I couldn’t remember for a moment how many years ago I was diagnosed, so “30-something” was easier to type).
I am firmly in the try it/say it/do it/#YOLO camp and continually try to push myself to do more and try more and be more. If someone suggests doing something, I am usually already figuring out how to make it happen. Anytime I suggest something off-the-wall, I am usually 95% on board with making it happen. Saying “yes” to things turned me into a marathoner and got me caught up with the best bunch o’bandmates ever, for example.
But having a chronic disease is a bit of a Catch-22 with all the yolo-ing. Overclock yourself and you might end up spending the next two days in bed. Keeping your job and that health insurance is the looming force over everything lest you end up having to decide between total financial ruin or condemning yourself to extreme sickness and maybe even death (yes, people die from complications with IBD). One guess as to my feelings about healthcare in this country and I don’t even have it that bad.
It’s a balancing act. And, for me, every time I feel slightly warm (is it a fever???), or tired (what is my sedimentation rate???), or creaky (how can your digestive system mess with your legs???), I fear that another flare-up is looming, ready to banish me to the bed or couch until another round of steroids mess with my body enough to get it into submission. But I’ve been lucky and fingers crossed that Remicade every six weeks is keeping that all at bay. Let’s not talk about the migraines that I used to get either (that, in Crohn’s remission, seem to be creeping back a bit, but luckily without the frequency or intensity – anyone want to study that apparent link?).
So in the meantime, I feel like I have a duty to myself to try to do as much as I can. And why I will always get behind the “what have you got to lose?” line of advice. Will you regret not having done something, whether it be taking a chance on a new opportunity, telling someone how you honestly feel, or pushing yourself mentally or physically? Those of us who have lost people early and are reminded constantly of our possible limitations end up with this weird mix of nihilistic optimism, I think.
And the blankets at the infusion place are often warm, right out of the dryer.