Tuesday, August 11, 2009

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?

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