I haven’t posted in a while, I think. I haven’t had much to say–pretty much all my time and attention is going toward the convention, and that stuff would probably be either incomprehensible or boring to most of you. Suffice it to say I’ve been busy. At least 3-4 hours of calls a day, plus training some of our whips. Somehow I’ve also become tech support for our region, which is kind of a joke. I’m decent with computers, but not great. Tonight I solved a guy’s problem with the mobile app for Android…but that’s not very impressive because all I did was google it.
I had a nice birthday. I went out canvassing for a couple hours, and then I came home and watched The X-Files and ate mango-passion fruit sorbet. I got a package of gluten-free/vegan peanut butter chocolate chip cookies from one of my friends from the trauma unit, and another friend sent me a package with really cute shoes, a top, a bag, and some yummy tea. There was some kind of shipping issue with my bike, so I haven’t gotten it yet, but I think it’s on the way. With my luck, it’ll come when I’m at the convention. But I think my roommates will be here, so it’s all good.
I’m anxiously waiting for my GI appointment on Thursday. I’m not even sure who I’m seeing from that practice–my pushy nurse friend was the one who ultimately got me an appointment that was before August. And it’s a good thing, too. The pain’s been pretty bad. It comes in waves, so at least it’s not constant…but when it hits, I’m doubled over and incapacitated. I’m only seeing blood occasionally now, but I’m still pooping bright orange pretty frequently and leaking a lot of the time.
I think I’m going to push for them to switch me to Remicade. Whoever it is probably won’t want to do it without talking to the doctor I usually see, but I’m hopeful. I’m taking my pushy RN friend, so she may be useful in that regard. I’m also going to ask for pain meds to get me through the convention and until we can get me on some meds that work better. I rarely ask for pain meds; in fact, I don’t think anyone at this practice has ever written me a script for narcotics. I’d been using a two-week supply they gave me from my ER visit back around Thanksgiving; that’s how infrequently I take them because they make me dumb. But I can’t be curled up in pain for the convention.
I’m also going to talk to whoever it is about the possibility of reducing the 6-MP. I really think it’s responsible for the horrible fatigue, and I know it’s what’s causing the nausea. Reducing it does worry me because it’s the only thing that’s gotten me anywhere close to remission, but now it’s making it almost impossible to function. I’m hoping that switching to Remicade (or potentially vedolizumab, if it’s available this soon) will get this shit under control enough that I can reduce the 6-MP. Not flaring doesn’t do me any good if I can’t get out of bed to enjoy it.