not all in my head, not in my head at all

so for months i've been blaming myself for my condition. thinking that each thing i ate was reflected in how bad my symptoms were, and if i could just find the right food combo, i'd be fine. Turns out I was wrong -- between my first flex sig and the one this morning, i've gone from ~30 cm involvement to 45 cm involvement. It looks really really angry (i'll spare you the pics).

have no idea why that happened, but apparently, it's not my fault. i think that's gonna take a while to sink in. i did what i thought i was supposed to, and the disease progressed anyway. i'm glad i went to the hospital when i did, and i'm so happy with my new GI. he's with the same group, so it was also uber convenient. he sounds almost excited to deal with my case, kinda like how my general doc got excited about treating my diabetes. like a home-owner do-it-yourselfer that discovered a project they knew how to tackle. so that makes me feel pretty positive. although parts of my want to just curl up in a dark room with the cure for a day or so, but i don't have enough vacation days left for a pity party. hopefully work will be mellow a little longer so I can shuffle around here in pain and folks cut me some slack since I was out last week. i have a great bunch of coworkers.

while i was hoping that the flex sig would reveal it was me making mountains out of molehills, i am sorta relieved it was actually really pretty bad. like, ok, i'm not crazy... it is 7 kinds of fucked up over there and needs heavy drugs.

my TPMT enzyme is a bit on the low side for imuran/ 6-mp, so we're jumping to remicade infusions. yes, chimeric monoclonal antibodies still scare the freak out of me. but that's because they sound weird and scary, and the more i read, the more i understand, and the more sense it makes. the promise that it can induce remission and halt the progression, actually HEAL the damage instead of just make it less painful... that's very enticing. I was totally ready to go with the 6-mp too, read the whole article my doc gave me an everything. I kept calling it the TMNT enzyme, for teenage mutant ninja turtles, but apparently I am officially genetically more pirate than ninja.

coupla days and I'll be ready to rock. continuing steroids, continuing asacol, taking a big-guns antibiotic in case i have c.diff (because the steroids should be working by now and are not), waiting for the PPD to confirm I don't have latent TB. Might have to do the PPD a second time, but even that means I'll be starting Remicade in a week or less. Might even be this week.

i'd be lying if i said i wasn't freaked out by the notion of a coupla 3 hr iv infusions of a mouse/human protein. but it's time to put the big girl pants on and trudge through this one. best case - remission and a normal life.

i just hope the spouse is ready. everyone in the doc office is being very positive, but I know it's not all rainbows and sunshine. i'm hoping i don't have to take benadryl, since i already take 2 antihistamines maybe i'll get away without it. I'm sure the benadryl contributes to that post-infusion fatigue I've been reading about. but even with some inconvenient side effects, people are so happy with the benefits, so I think it will be totally worth it. I'm not sure if the spouse knows the side effects and is putting on the happy positive face, or really thinks that after a 3 hr iv drip, i'll be ready to go do everything i want and need to do and have energy to spare.

I was really hurt this morning -- the first few days back from the hospital, i felt the best i've felt in a while. i had to remind myself to slow down, i was invincible! i got so much stuff done! i had mad insomnia and was crazy hungry, but wow, brain fog was gone! pain was gone! then, pain came back, tiredness came back, pain and awfulness came back, and i'm feeling pretty wrecky today. the dishes haven't been done since I did them before going to the hospital. there are bags of trash everywhere. i have to step over everything to get around the house. yes, most of it is mine, but some of it is his and he could've taken care of it already, but has not. i don't understand why. i understand the need to relax, but i was gone saturday night with my mom and all day sunday working, and he did absolutely nothing. then this morning, we were saying goodbyes after the doctor visit, and i said, "i'm sorry to ask, but I still really need your help alot around the house. i really don't feel well." and he kind of dismissively said, "don't worry, after the infusions you'll be much better." I didn't really know how to take that. I really just wanted him to say, "don't worry, i'll take care of that for you." instead of what sounded like, "don't worry, it'll be waiting for you to do as soon as you feel better." i dunno, it made me mad. like my reward for getting better is getting to do chores. woo fucking hoo. but if he truly is leaving it for me when i'm "better" he's in for a surprise -- i'm not doing any of it. i'm calling in outside help. because the longer it waits, the grosser it gets, and i just can't handle wasting my upcoming good days stuck inside doing fucking chores.