twitchy

aside from my vibrating descending colon, my legs have also gotten into the habit of feeling twitchy. not as extreme, like a buzzing vibrating, but more like pinches that make me have to move. The worst part is when i'm trying to sit still, or sleep, I feel like I have to keep moving and it's freaking annoying. It seems to have calmed down today, but the last two days were really rotten. I asked Dr. J and she said it could be related to the anemia, so hopefully we get that under control soon. I'm bleeding alot less, which is good, but I'd love to be bleeding not at all. Here's hoping sept 16th gets the job done. i can deal with having a cycle of remicade-induced remission that wears off right before the next infusion, kind of like a predictable cycle of suck, instead of this constant "what the hell is today going to be like?" unpredictable bullshit.

and oh yeah, i have a serious slurpee addiction. today after quest, i got the biggest freaking cup there was and filled it to the brim with sugary, icey, caffeinated goodness. figured if i'm twitchy anyway, might as well enjoy being awake too. much better than being twitchy and a zombie, now even though I still I can't sit still, but I think it's funny :)

mmmmmm, frozen braaaaaaaaaains

still buzzing

2.5 hrs later and no difference. well, maybe it feels a little worse, like a constant buzz.

guts on vibrate

*bzzzt* *bzzzt* I feel like i have a blackberry lodged in my intestines. This buzzing and bubbling goes up my whole left side and even my stomach joined in this morning. wtf is this? i'm gonna hit it with an anaspaz and see if that stops it, but this sucks!

stayed home yesterday and slept all day, still woke up tired. i'm not getting good sleep at night. Hubs says i whimper and thrash all night. the tramadol is not doing enough to cover the hip pain, and when i roll over i wake up. last night i woke up each hour, after not being able to settle down and go to sleep until like 1 am.

but this buzzing thing is just awful. i wish whatever alien or monster is stuck inside me would just tear through my body and escape already

diabeetus chekup

Got to Dr. J on time yesterday, however she was crazy overbooked from cancelling office hours last week. no prob, giants vs panthers preseason game was on so I could watch Delhomme and relive the playoffs... sigh

anyway, after the ill-informed nurse nagged me about eating more raw veggies and increasing my exercise, I tried to tell her that I was still flaring, following a low-residue diet, and getting some walking in, but it was hard due to the anemia making me feel totally wiped out. She said more exercise would make me feel better. I swear, that's the only thing this lady ever says to me -- oh look, a fat diabetic, better tell her to stop eating fatty food and go for a jog. like i need some skinny blonde telling me what i already fucking know. hey lady, how about you tell me how i can eat a salad without taking the express train to pain town? or how to eat veggies without cooking them to death or eating baby food versions. i'd love to eat carrots and celery and stuff, but my guts don't like it. I don't eat raw veg, most fruits, nuts, beans, dairy, or high-fiber breads and cereals. there's not much left. sometimes i just wanna pick up a case of ensure and call it a day.

anyway, after the fat-shaming and guilt-tripping, she left and Dr. J came in. My bloodwork came back and she's very happy. HDL is up to 57, LDL is down, triglycerides are down but still on the high end. other enzymes and whatnot are in normal range. woo hoo! a1c is 6.1. weight is stubbornly stable. which is alright. i basically gained back everything i lost during my hospital stay in may, but not more than that. since i've been eating like a snake lately (not eating for days, then pigging out), and not getting any activity other than moving from my bed, to my desk, to my bed, with a dozen or so trips to the restroom, it's not surprising that I'm not losing weight.

anyway, i was feeling pretty good yesterday, and finally got out of there around 9:30. there's where all my time is going, i waste hours waiting for docs to see me and phlebotomists to stick me and for walgreens to fill my damn prescriptions. that's when i'm not being held hostage at home by my intestines. being sick is expensive and time-consuming! but i think i hit all my deductibles for the year, so it's free drug time. now i can afford my bazillion office visit copays without worrying.





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victory!

7 am: woke up, thought it was saturday, went back to sleep.


9 am: woke up, realized it was tuesday, got ready for work. contemplated working from home since i was already late. but i prefer to save those days for when i need a private restroom. besides, if i sit still in a quiet place with no one around, odds are good i'll pass out.

11 am: drifting off at my desk, thought about going home early, but I need to seriously conserve my sick days

1 pm: just have to make it to 2 pm, then it's a half day and I can go home.

2 pm: i don't have the half-days to spare either, got a vitamin water with lunch. maybe that'll perk me up (damn, i miss caffeine)

3 pm: want to go home. want to go home. want to go home.

4 pm: no point in leaving now, i only have to last until 6 pm. grabbed snickers bar (naughty diabetic, bad girl!)

5 pm: snickers wore off, gnawing ice makes me cold. made tea, found organic apple chips in the vending machine. 43 cal and take forever to eat, score!

5:30 pm: day seems to be getting longer. i have a sore throat now, wtf?

6 pm: freedom! according to my traffic alert thingie, 287 should be clear

6:15 pm: maybe this traffic clears up at the New Brunswick exit

6:30 pm: wow, 10 mph, I didn't think we'd ever go this fast

6:45 pm: I am seriously going to murder this douchebag in the honda

7 pm: in bed at last! but it's too late for a nap, and too early to go to sleep. luckily tonight is my last procrit injection, woo hoo silver lining!

ice ice baby

i don't know why, but all of a sudden, i'm all about chewing ice. it's so good! it's so weird. i never wanted to chew ice before, usually my teeth can't deal with supercold things. my sister used to chew ice as a kid, and it used to drive me crazy. she had a yellow plastic cup that she would use to carry the ice around and eat it. i had a recurring nightmare that as she ate the ice, her teeth would fall out and into the cup, and she'd eat those too, not even realizing she was out of ice. i was like 6 or 7 at the time, and it still kinda freaks me out.

but mmmm, ice. i hope it's not as loud to my coworkers as it is in my head :)

waiting and hoping

so last wednesday, we started the process of bumping my remicade up from 5mg/kg to 10mg/kg. since I had an infusion on 7/23, they couldn't give me the full 10mg/kg due to the half-life of the drug. They said it would be like getting a 15 mg/kg dose. hell, if it works, do it :)

so far so good. i'm eating fresh fruit but still staying away from veggies. i got baby food veggies to try out instead. everytime i eat veggies it's a bad scene, but I gotta eat them. i want so much to eat like a normal person and lose some damn weight. i'm the only chick that could get IBD and get fatter during a flare. sure i'm anemic, but i'm porked out. wtf

still pretty tired, but i think the stronger remi dose plus the procrit may be working to make me less zombified. i almost made it to book club saturday, but had a total meltdown between activities and just wanted to go home. i get tuckered out very easily and very suddenly, then i just can't deal with my embarrassing uc symptoms (unless i'm in my bubble).

PCP was rescheduled for next week, so that gives me an extra week to be good, take BG readings and not eat like a pig. Saw Gastrodoc today, he's awesome, but it's wait and see time. Did recommend seeing someone about my hip pain, but defers to my PCP when it comes to referrals -- she likes to be in charge. i don't want another cortisone shot, but my hip is freakin killing me. can't really afford PT, but maybe i can get 1 or 2 appts with Nat the cool PT guy that fixed my knee and get some homework.

FSA is down to $200, due to some surprise co-pays and unexpected fees from my hospital stay in may. Turns out that each doc charged me separately for the 5 minutes they came in to check on me and do nothing. insurance covers 90% after deductible, instead of 100% like we had last year. which is total bs. our premiums go up, so why does our coverage go down? for-profit health insurance is a scourge on the system. forget all this overly-complicated healthcare reform -- ban the muthafuckin for-profit insurers

I had wanted to give myself a doctor vacation after today, because all my appointments would be done until my next infusion, originally scheduled for oct 1. That woulda been 7 weeks of no needles, poking, scales, waiting in the lab, etc. but i had the opportunity to move the new remicade dose up to 6 weeks instead of waiting 8 weeks, so now I go Sept 16th. Also, PCP is moved to next week and I have to get bloodwork after my procrit course is over. so my little vacation got whittled down to almost nothing. Still, it'll be nice to have 2 whole weeks with no needles or copays or waiting rooms. woo fucking hoo! :)

good timing too, because my $2000 pre-tax medical budget is gone! now any copays will have to come out of my actual take-home pay, or end up on mastercard. wonder if I get double-reward points at walgreens? can i redeem points for asacol?

remicade 10 mg/kg

just say no to wrist IVs