Jun. 12th, 2015

next_to_normal: (Buffy ugh)
Sorry if this ends up becoming The Crohn's Blog for a while. It's been sort of all-consuming lately. I've been feeling more depressed and anxious about it than usual for some reason. Maybe it's the duration that's getting to me? I don't think I actually feel worse than I did when I was first diagnosed - when I actually ended up in the hospital - but it seems less tolerable than it was six years ago.

What happened to the girl who would throw up in the morning and still go to work, because it was only worth a sick day if I threw up more than once? I mean, obviously that's sort of crazy, but I feel like I was a lot tougher back then and shit has just worn me down so that half the time now I don't even want to get out of bed in the morning, and I've been taking days off far more than I ever thought I would. And my boss has been unbelievably accommodating in letting me work from home, but I also feel guilty because whether I'm in the office or not, I know I'm not getting nearly as much done as I would if I weren't sick. (Then again, this job requires me to do actual work. It was a lot easier to go to the office at my old job, no matter how sick I felt, when 80% of the time I was there by myself and just watching Netflix.)

And I also just don't have a lot of optimism left. We've run through most of the major drug options without success. I can keep hopping from clinical trial to clinical trial hoping for a miracle, but that in itself is exhausting, because it means more doctor's visits and more colonoscopies, and half the time it doesn't have any effect at all.

I have two more weeks before I can switch to the weekly Humira dose. If that doesn't improve things, then after 8 more weeks I can try another study, this time for an antibiotic. I'm just... tired. Of all of it. And wondering how many more things there are to try before the only options are steroids or surgery, both of which are awful choices.

Also, GOD I MISS FOOD. I've been mostly eating pastina, soup, and Ensure, and getting kinda sick of it. This is why restrictive diets don't work, because when I am food-deprived, I crave EVERYTHING. Like, we're at the point where I hear about Pizza Hut's new hot dog stuffed crust and think, "OMG THAT SOUNDS DELICIOUS," even if it also makes me feel a little nauseous thinking about it. That's not right, y'all.

Cut for weight/body stuff )

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