Doing a little better today. Got zero sleep last night, but the asthma’s cleared up some.
My whole therapy session today was me venting about how I don’t want to be a sick person but I’m always sick these days. I was trying to explain to her that I feel like I don’t know myself anymore–the body I was used to is suddenly foreign. Body image isn’t quite the right term because it’s not about appearance, but my relationship to my body has changed in ways I don’t like or even understand yet.
Annie commented that it’s odd that I didn’t see myself as a sick person, since I’ve had some major health issues. I hadn’t thought of it like that before, but I guess it is sort of strange. But the other stuff wasn’t as disabling as the UC. I grew up with the ear infections, surgeries, and hearing loss, so that was just my normal. The symptoms from my AVM weren’t severe until I started having seizures, and then it was quickly diagnosed and treated. With the motherfucker gene, all I have to do is take pills. The back injury would’ve been pretty disabling, but when it was bad, I was so depressed I didn’t want to get off my sofa anyway, so it didn’t bother me too much.
But the UC, damn. It’s way better than it was, but I still have pain most of the time and have anywhere from 3-8 BM’s a day. On bad days, I can’t leave the house because I might explode if there’s not a bathroom available as soon as the need hits. My diet is severely limited, so even with supplements I’m malnourished and chronically dehydrated. Zero energy. And oh my god, my FARTS. You can’t even comprehend the magnitude. Most of the time I can’t hold them in or even make them silent, and half the time I have to dash to the bathroom because I’m not sure if I’m gonna fart or crap my pants. My farts could knock a herd of cows out cold.
But I saw the gastroenterologist this afternoon, and he seemed very hopeful about getting me into remission. He said there’s a very high probability of achieving remission with the combo of the 6MP and Humira. This was a doc I hadn’t seen before–I’d been seeing an NP at the practice, but she wanted me to see an MD because I’m a difficult case. (I would get the most severe, hardest to treat form of UC because I don’t do anything half-assed. [Sorry. Poop jokes are my coping method.]) I liked this guy. He was thorough and explained things without talking down to me. I’ve been happy with this practice–their office staff are terrible with organizational stuff, but the actual medical people I’ve dealt with have been great. The NP actually called two different times to see how I was doing. I’ve never had a doc/NP/medical person do that in my entire life. After yesterday’s clusterfuck at the PCP, I was dreading this appointment, but it ended up good. Not a single hint of “it’s all in your head.” I mean, it is kind of hard to chalk up the colonoscopy results to OMG TEH CRAZYYYY.
I should get my Humira tomorrow, and I have an appointment Monday so the NP can teach me how to give myself the shots. The 6MP can take several months to start working, but the Humira works a lot quicker. Once it goes into remission, then we can start weaning me off some of the meds slowly–the GI doc said hopefully I could get down to just the 6MP. He said he’d taper me off the budesonide first, then the mesalamine, then maybe the Humira, depending on how I feel and how my labs look. I would love to be on just the 6MP, and he said he’s seen patients have 20 years of remission this way. That would be amazing. I will never take normal pooping for granted again!
So I’m feeling much better than yesterday, emotionally, and the asthma is somewhat better. My psych nurse is going to call my psychiatrist in the morning and get him to give me something for the asthma. I’m sure he’ll be willing to do that–he’s written me scrips for non-psych stuff in a pinch before. A gave me the name of a primary care practice she’s had good luck with, so maybe I’ll see about switching to a PCP there. I’m feeling a lot more hopeful about life.