never let me down again

oh, pred, why do you taunt me?? i've been taking it now for 2 weeks, but fake-remission hasn't returned. biopsies and samples came back negative for everything, but apparently the test for c.diff misses it like 30% of the time, so Dr. G wanted to do another round of Flagyl.... noooooo! luckily, i remembered how horrid that was back in June, and asked if there might be anything else i could take instead. so he gave me vancocin instead. it is much much much more expensive than flagyl, but without the painful side effects and severe interaction with booze. which is good, because i got tailgating to do this weekend, woot woot!

so between the 40 mgs of pred and the vancocin, i've been fairly nauseous. the vancocin made the d soooo much worse for the past few days, and the bleeding still has not stopped. i spent 15 minutes in the grocery store trying to figure out what kind of protective undergarment would be best to wear to the stadium on sunday just in case i can't get to the ladies room in time. i left work sick on tuesday and cancelled on my thanksgiving plans for thursday, i'm hoping i can salvage at least some of this weekend. i slept most of the day yesterday, which was nice, but today at work, i was still going like almost once an hour. i'm supposed to go to the family tomorrow, and i'm hoping i can make it, but i'm afraid i won't even last the car ride without having to stop to go. and it's just so much easier staying in my house. i'm so anxious about embarrassing myself or being smelly or puking. at least home, no one else has to see me like this.

my doc thinks i have a superinfection, because my flex sig showed pretty severe inflammation, even after all the remi, humira, and pred i've been taking all summer long. so my theory is my D got worse because all those little bacteria were getting killed off by the vancocin and dumping all their gnarly toxins at once.

Dr. G also felt that end of february was too long to wait to see the specialist, but though he tried to get me in earlier, Dr. L has nothing available sooner. I am on the waiting list though in case someone does cancel. Dr. K could see me sooner, but does not take my insurance, or any insurance for that matter, and my insurance can't give me a reasonable estimate of what they will and won't cover. So i'm going to my last choice, Dr. D on the 8th. I'm still going to wait and see Dr. L, but maybe Dr. D can suggest something since he is an IBD specialist. if i like him, great, he's local and takes my insurance. if not, no prob, i keep waiting until next year.

the bummer is that i'm a little freaked out by all this waiting and not getting any better with treatment. i absolutely don't want surgery, but i'm afraid these delays might take that choice away from me. i really like my doc, but i feel like we wasted alot of time. i also feel that my hospital visit in may was a total waste -- although they treated the pancreatitis, they didn't really do anything about the UC while i was there. i feel it was kind of a missed opportunity, but i did learn a valuable lesson -- i will avoid that hospital as much as possible. i'm kinda hoping Dr. D wants to admit me when I see him on the 8th -- my deductibles are already paid for the year, it would be the perfect time to do IV treatments or bowel rest or something. If i end up having to go in January, I'll have to pay everything from scratch again. thank god my FSA will be nice and replenished come jan 1... i only have like $25 in there right now.

i am so grateful to have such great insurance. i'd be totally hosed without it. i've spent probably $3k out of pocket, and hubs pays another few thousand for the premiums, but it's nothing compared to what this stuff actually costs. hopefully next year will be cheaper all around once we figure out how to get this thing under control. it's no fun being sick and broke all the time.

EDIT: i actually haven't been taking pred for 2 weeks, just one. dang, this has been one long annoying freaking week!

i can haz steroids?

my mouth is erupting with aphthous ulcers -- it is painful to talk, laugh or eat. anything acidic feels like eating fire. i feel like i've been chewing glass. luckily, i go back to gastro doc on monday for my biopsy results. i'm gonna beg him to put me back on steroids until i can see the ultraspecialist dude at the end of february. february feels very, very far away.

back to the drawing board

so today I had my 3rd flex sig of the year. not really getting any easier to do. worst part was finding out what I already feared-- inflammation is just as bad as it was during the previous one back in May --Right after I came out of the hospital and before I tried Remicade. So the multiple doses of Remicade did nothing. The weekly doses of Humira are doing nothing. the only thing that seems to have any impact is prednisone, which has too many systemic effects to be used as a maintenance drug, obviously. and all that does is treat the symptoms anyway, not the cause. so did i just waste all this time, money, and energy? not sure. at least i'm not sticking anything in my keister for awhile

so they took some biopsies and samples and will go have those tested. My doc wanted their in-house folks to look at it so they could rush it, however they don't take my health insurance, so it will need to be sent out to the insurance-approved lab. whatever. my doc gave me another specialist to contact, but he doesn't take my insurance, so we had to find another one. No biggie, instead of going to Mt. Sinai like I wanted, I'll be going to UPenn, to a doc that went to school at Mt.Sinai. close enough :) on the plus side, I find it easier to drive to Philly than drive to NYC.

The earliest I could get an appointment is late February.

(And folks want to convince us that single-payer healthcare would somehow be worse??)

so essentially, i'm in a holding pattern for 3 months. but my doc gave me a new version of mesalamine (thankfully, it's oral). omg these pills are huge! the standard dose is 4 pills a day, I get to take 8 of them... and unlike the asacol, there's no way I can swallow more than one of these at a time... just look at them!

apriso

soooo angry!

dammit dammit -- a month and a half ago when we started Humira, my doc said if it didn't work we would "take a step back" and probably get a second opinion to see what the heck is going on. well, he failed to mention that part of taking this step back meant me getting yet another flex sig. dammit to hell. 3rd one of the year. i figured the second-opinion doc would want to do his own flex sig, and i'd take the day off, go to the city, get everything done in one visit. but noooo, i get to go in on monday, get this done, go to work, then go to my primary physician for my annual (which I scheduled weeks ago) so I can get a refill on my birth control. maybe i can go to the dentist during lunch and achieve a trifecta of misery. I wish I had a disease where you could stick me in one of those radiological doodads and just scan for errors. but nooo, someone's always sticking something in me or up me. it is positively medieval!!!

i'm like 3 minutes away from throwing a full-scale toddler meltdown tantrum. being a grown-up fucking sucks!

5th dose, headache returns

yesterday we finished cleaning the apt, locked the cats in the bathroom before the pest control folks came over, i gave myself my 5th humira dose, then went to the lab to have eleventy billion vials of blood taken. then went to work. it was a busy morning!

last night, i woke up at 3 am with the worst headache ever. i could not find a comfortable position, but eventually, i fell back asleep. until 4 am. i got up, took some tylenol, and rolled around trying to find a good position for my head. i've never had headaches like this before. it's like my whole head is going to explode. i used to get awful sinus headaches before my sinus surgery, and migraines that made the right side of my face feel like it belonged to someone else, but these are way different. there is no comfortable position - right side, left side, back or stomach, all hurt. sitting up doesn't help either. in fact, changing positions helps for a few seconds, then the pain returns full force. it seems to center in the back of my head almost, and wraps around to my ears. my ears feel like they are about to blast off the sides of my head.

eventually i fell back asleep, but i was still in pain when I woke up later. i could barely force myself out of bed. i tried a steamy shower in case it was congestion, i drank some water in case it was slight dehydration, i ate some cereal in case it was just hunger. no relief at all. i took more tylenol and tried to sit still while working.

finally, at almost 2 pm, i've gone from the worst headache ever, to just a normal headache. hopefully I don't have any more, but if i do, at least i'm keeping track.

forgetfulness

wow, i cannot stick to anything. i give up on trying to remember to write happy stuff daily. maybe i shoulda hung a sign in the bathroom. the good news is I just finished Lamb (highly recommend!) and am almost done with the Zombie Survival Guide (also awesome -- so is World War Z).

definitely going to check out more of Christopher Moore... i love his style, and hubs has listened to a bunch of his stuff on audiobook and really enjoyed it. the BN reader app on the ipod touch is just awesome. great, now on top of all the $$ i spend on new music through itunes and amazon, it's now supereasy to download books. best part is not having to worry about storing/donating/trading the actually object when I'm done (i have about a ton of books i already need to find new homes for - anyone wanna come over and pick up some free books?).

i think this is the first time i've actually read the book for bookclub and finished it. that's a milestone for me :) well, not counting the first book, bluest eye, that i read in college and only sort of remembered. and that one book i didn't read because I didn't have time, but the group said it was awful anyway. and I did finish one book, The Art of Racing in the Rain, which was good but then i was too sick to actually go to the book club meeting.

this week will be the first week off no prednisone, all humira. i gotta remember to watch what i eat, because pred gave me the ability to eat whatever, and i'm learning that's not really true with humira. i'm on weekly dosing, which means thursday, fridays, and saturdays are generally good days. hopefully, i'd like to expand that to sunday and monday soon, then eventually get 7 good days a week (i'm sooo greedy!). i have my next checkup on december 1st -- plenty of time to have a good trial of humira. if i'm still having issues, i may ask to try adding on MTX -- from what I see on boards and articles and whatnot, alot of people have success with the combo therapy. but i'm pretty sure that if i'm not all set with humira, i'm gonna have to go see my doc's colleague and get that second opinion. which is cool, i mean, the fewer meds the better, and maybe there is something I missed during my summer as a guinea pig



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humira - 4th dose

So i'm on the weekly humira dosing, and so far so good! i was naughty and had roti canai wednesday night, but then my green curry was not spicy at all, and neither seemed to have any effect on me, woo hoo! this means i get a do-over on that green curry :)

i've got a little left sided pain, but i can totally deal with that. funny, back in march, this was the pain I was trying to get rid of, right before the giant flarestorm started. maybe with a few weeks of reduced inflammation, that will go away too.

happily, my insurance approved the weekly dosing, no questions asked. hardest part was getting the doc's office to actually send my prescription to my pharmacy. i guess it got lost in the shuffle on tuesday, but we called them today and it got sorted out. i was expecting to have some back and forth and wanted to make sure i left enough time for any arguments to be resolved in time for wednesday's shot... it was a nice surprise that my next 4 shots are chillin and waiting for me to pick them up. and for FREE! not $4k

it's gonna suck in january when i have to pay copays again, but i'll also have cash in my FSA again! woo hooo! I think I have like, $5 left for the year. hopefully i can dodge any more doc visits until next year :)

happiness friday, saturday, and sunday

on Friday, i borrowed my husband's pirate hat -- i don't like wearing hats but the costume didn't look piratey without it. turns out i got more compliments on the hat than on any other part of my costume!

saturday i wore scrubs to my sister's kiddo halloween party. it was a good time. my mom told me my aunt was really touched by the fact that i sent her a get well card. i don't usually send alot of cards, but when i was in the hospital in may i got a random card, and figured if it made me that happy, it might help my aunt smile when she got back from the hospital.

saturday night, folks came by my party, and we had a good time getting all sugared up and watching coraline. my sister wore candy corn pants under her costume because they were more comfortable than the tights she wore all day -- she called herself "captain candy pants" and it stuck.

sunday was mostly sleeping. turns out i did come down with a cold despite my best efforts to avoid it. but carolina won! finally, i've only been waiting since january for them to beat arizona. and peppers got a touchdown! way to get back into the game! keep it up, keep running that ball! no sunday ticket, so i had to watch the vikes/packers game, but it cut to the last few minutes of the carolina game and i got to see warner's last interception (his sixth of the day). that was sweet :)