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.

apriso

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.

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 :)

humira - 3rd dose

omg, talk about 3rd time's the charm! the first two doses, i was covered by steroids, so i couldn't tell if they did anything. but this one, wow! i think we might need to adjust the dosing to weekly instead of every other week, but the effect is almost immediate!

flashback to wednesday -- monday and tuesday nights were awful and so was wednesday during the day. i got home and took my shot and didn't expect much. but thursday, i noticed my guts were much quieter, there was less blood already, there was less pain. i was afraid i might just coincidentally be having a good day, and didn't want to give humira all the credit, but now it's friday, and i feel just as "normal" as I did on 30 mg steriods. this is awesome!!

so by tuesday, I'll know whether i need weekly or not. if i feel terrible again, i take the next shot. if not, i wait until next next wednesday. woo hoo!

now, if only it would also get rid of the stupid aphthous ulcers that have decided to make a comeback, i hate those things!

humira dose 2

just finished my second dose of humira (2 shots). yeeeeeeeeeeeeeowch! not sure what i did wrong this time, but man, it huuuuurt. i actually have two tiny bruises now, where when i did the first 4, i left no marks. oh well, i'll get more practice in 2 weeks, with only 1 pen. yay!

but wow, remicade suuuuucks in comparison to humira. i can't wait until it gets the indication for UC and no one has to go through 3 hr remi iv infusions anymore. hopefully it's as effective, even if it takes a little longer to get going. but talk about easy -- i take the pens out of the fridge, wait a half hour, prep the site and push the button on the pen. count to 10 aaaaand we're done! too bad i had to fail on remi first. good thing i have awesome (and expensive) insurance that approved Humira.

i'm feeling really positive about this. i'm down to 20 mg pred and so far no symptoms have returned. i feel normal! i ate raw baby spinach and raw tomato on tuesday. I had sushi on monday! i ate a pear today! friday is the last day at 20, then i drop to 10. i had my last procrit shot yesterday. i had bloodwork done saturday for the anemia workup, and that should show improvement, finally! awesome, just a few weeks ago, i was afraid of losing my job and my colon. thank you, prednisone and humira!

vsl saga concludes

after calling just about every pharmacy we could find, we've settled on paying cash for vsl 3 at costco -- $68 for 30 packets. the double strength is $106, but comes in a 20 pack. and with my luck i'd spill it or something. the target has it for $82.50. much better than the walgreens $150 price. that was ludicrous.

yes, aetna won't cover it, but at least we were able to find it somewhat cheaper than getting it direct, and i won't have to pay shipping or pay attention to the mail to make sure i get it in the fridge. i've met my out of pocket pharma max for the year, so no drug copays for all the other stuff I take, so I can splurge on this probiotic, lol! i was paying $150/month for the asacol and rowasa and canasa at the start of the year, so $68 is a bargain :) figure i'll take it for a few months, then re-evaluate in january when my copays kick in again.

i just can't stand eating yogurt anymore. and i feel it would be a waste to spend less on a less effective probiotic, you know? like $30 for align that is like a regular-person strength probiotic vs $70 for one designed for uc/pouchitis and has been studied and recommended by other folks just seems like a good idea. whatever, if it helps even a little, it's probably worth the $2-3 a day.

still funny to me that pred is 25 cents a pill. I'm down to 20 mg starting today.

Humira day 1.5

I'm feeling a bit fearless today because I jabbed myself with 4 needles last night. What could be worse than UC and 4 needles?? lol :)

good thing, because today is nutso. I can't believe it's only Thursday. I can't wait for this weekend. Maybe the Panthers will even remember to RUN THE BALL and win a game this sunday :) [edit: we can't win, but we can't lose either... i can't believe we have a bye week so early.... gonna be a long season]

today started inauspiciously enough. i endured a half hour of port-lucie level abdominal agony, then got out of the way so hubs could get ready for work. i tried to then eat some cheerios, but there was some buggy looking thing floating in the bowl, so I dumped it (i had already eaten half, why does this always happen!??!). I never found where the other cat was hiding, usually she follows me around all morning. I meant to check under the bed before I left, but forgot, so now i'm at work fretting. i'm sure she's fine -- she was probably up with me all night and decided to sleep in. i had freaky ass nightmares all night. something vague and frightening was coming for me in the dark, and I wanted to hide, but could not close my eyes. when i did, my body shook because cancer was seeping into me and taking over. so being out in the open meant dark things attacking me from the outside, but hiding for protection gave me cancer... fun fun fun. plus the usual nightsweats. gah!

so i eventually felt well enough to actually leave the house, snarfed an anaspazz on the drive, and just gripped the wheel, telling myself i would be all good in 15 minutes. i can survive anything for 15 minutes, right?

HUMIRA thoughts: my guts are a bit noisier than i'd expect after a loading dose, but I'm used to Remi infusions. my whole left side feels carbonated, but that could also be due to me eating everything in sight yesterday. naughty naughty :)

the injections weren't so bad; the pens are way easier to use than needles and syringes, but I have a bit of control freak in me so it was hard to just push the button. i was so afraid I was gonna miss or something. i stood there with the pen pressed to my belly, and envisioned being on a speedball field and hearing the ref say "GO! GO! GO!", then pushed the button.

with my 4 pen pricks and my navel ring, I feel like a star-bellied sneech :) i almost never do injections in my abdomen -- when i did allergy shots I tried a few times and itched like mad, so I stuck to thigh injections. I will probably still do the procrit in my thighs too, but hopefully that'll only be for 2 more weeks. pred has apparently stopped the bleeding, so I can actually rebuild my red blood cells now, yay! i just need to verify it with the next blood test, but I feel optimistic.

the pen injection was over really quickly - little pinch from the actual needle, followed by a little burn from the Humira itself, gone in a few seconds. more painful than an regular shot, but less painful than procrit. and today, there's no bumps, welts, or discoloration. just the little dot where the skin was pierced. nice. all told, probably took me 30 minutes to administer the dose, and most of that was fretting and being overly careful with everything. oh yeah, and finding out that the pens can't fit in the hole in my sharps container, lol! I hope I get the one from myhumira soon. I put them in a temporary safe place for now, but I don't like to leave needley stuff laying about. and taking the lid off the sharps container probably defeats the purpose.

as far as side effects, or any effects, I think it's too early to tell. I've heard it can take a month for Humira to make its presence known, but I don't know if that means for RA or Crohns, and I have no idea how many UC users there may be. but definitely easier than Remi, and no benadryl involved. Also, I realized I probably can't get that flu shot this weekend either, so that's a needle for another day. Next Humira dose is in 2 weeks, 2 shots. Then every other week, 1 shot. Not a bad deal. Wish the Remi had worked, but at least there is something else for me to try. Here's hoping!

don't fear the steroids

been doing alot of thinking over the past few days about how maybe i tapered off steroids too quickly the first time around. i was so paranoid about side effects and the affect on my diabetes, as soon as I got that first remi infusion, I stopped taking the pred. Now in hindsight, i wonder if i would have enjoyed my summer more if i kept taking the pred. then again, we were hoping the remi would work all on its own, but it kinda sucks how tired and sick I was and how much I missed out. If you're gonna miss 4 months of life in NJ, you're better off doing it during the crappy winter months when everyone is a hermit anyway :)

i've been on 40 mg pred every day for a week now. it keeps me awake and i've had some big bursts of energy, but today I am so zonked out. i think i overdid it this weekend and am now paying the price. the worst symptom this round has been the night sweats. i wake up every night like someone dumped a bucket of warm water on me. at least this time i'm able to get up, change, and get back to sleep. back in may, if i woke up at 3 am, that was it, i was UP.

also, the biggest blessing of this round of pred is that all my mouth ulcers disappeared immediately. those symptoms were absolutely miserable. i changed my toothpaste, tried to avoid crunchy foods, tried a ton of nasty-tasting ora-gel and dubious health-foody natural treatments, to no avail. 1 day of pred - sores gone! nice.

part of my focus on the side effects of pred is also due to my terrible vanity. i've always struggled with my weight, and before this last flare, was doing great on a diet and had lost 30 lbs and was on track losing 1-2 lbs a week. i was getting my blood sugar stable and under control, and really enjoying all the yummy raw veggies and healthy snacks and fiber-riffic foods. that's all mostly gone out the window, and I'm so frustrated with food. now it's even more important to watch what I eat, but I am a total slacker. i know i'm flirting with moonface and acne and a hump, but dammit i want junk foods. blech, i know better, i want to be better, but I just don't do it.

the side effects of pred are scary, but largely manageable. and hopefully i don't have to worry about some of the worst ones since I'm not taking them for years and years. i guess after the last 4 months I'm more willing to risk and tolerate them in order to get the way-cool benefits, like being awake and not in the rest room. i'll probably overlap the humira and the pred for a while and maybe in a few months the next flex sig will show an improvement in the inflammation. i'm just gonna give these bad boys time to work this time.

$1000 pens

my doc prescribed me Humira pens, yay!

Aetna refuses to pay for it until Tuesday, booo!

but walgreens says I can come and pay retail for it: for 6 pens, it's only $6K... lmfao!

remicade 10 mg/kg

just say no to wrist IVs

procrit

remicade part 2

yesterday's remicade infusion was completely uneventful. Hubs came along to see everything, read the PI and watch me get hooked up. There was another patient that came in toward the end for her infusion. She's been on Remicade since last July and has been having a great experience with it. She was very sweet and we chatted a bit. When I was done and they removed the IV, we held pressure on the vein for about 10-15 min, made sure the bleeding stopped, then i was on my way with no drama.

Doc says bloodwork looks good, and the tiredness may be due to being slightly anemic. They gave me some iron supplement (yaaay free samples!) and said it'll probably resolve itself now that the GI bleeding is stopped (thanks remicade!). I'll be tapering off the pred now, which is awesome, and scheduled my upcoming doc visits and next two infusions. Next month is my last of the 3 induction doses, then I'll be on the 8 week schedule. I go on sept 16th, and fly to FL on the 17th for my anniversary trip with the hubs. It's a really nice thing to look forward to.

I like that everything is finally scheduled too... I feel like I have a plan and I'm in control again. sure, i'll be in the doc office and the lab once a month, but it's better than losing entire days here and there randomly.

i'm totally wiped out today, i woulda loved to stay home. but i had a presentation (it went really well). got plans with sis tonight, mom and the fam tomorrow to see my uncle's stand up gig, but i think sunday I'll make a date with the bed, and the cat and my knitting :)

quick thoughts on the morning after my first infusion

my system seems to have quieted down. no gurgling or cramping or that vague feeling of something wrong. there is already a lot less blood, but let's see if it lasts. I've had random good days before.

i have a gnarly bruise from the infusion. the iv was fine until they took it out. they slapped on some gauze and said i was good to go. as i packed up my things, i felt something wet, and noticed blood everywhere. it's definitely the worst bruise I've had, worse than the ION 07 reball shot. pics later :) then again, my skin is so pale, it looks worse than it would on a normal person.

i started coughing on Friday and it's gotten pretty nasty. I had a sore throat, figured it was dry mouth/post nasal drip. Started using the humidifier in the bubble. folks were smoking around me at the field and there was a ton of smoke from the final battle -- that probably didn't help. i got a little wheezy and hit up the advair, but didn't go total rescue inhaler. tuesday at the concert it started getting "productive" and just sounded BAD. people were moving away from me. sis thought it was funny and made swine flu jokes. but this morning i think i'm kicking out all that stuff in my lungs and i'm feeling better, it just hurts when it gets going, it's one of those nasty deep bronchial coughs.

my whole mouth felt like it was pizza burned, so i got some biotene. that stuff tastes nast but seems to be helping. also helping is if i could stop chewing my tongue. what a weird nervous habit. blarg. but it is better today than yesterday. earlier this week it was hard to eat because my mouth hurt so bad. i was like great, sometimes i have no appetite, sometimes i'm just super nauseous, and now sometimes it just hurts to eat. yet i'm not losing weight. i own the most stubborn fat cells on the planet.

woke up with some crappy clammy feeling and nausea, but it was 7 am, not 3:30. woo hoo! i did overdo it last night with cleaning because i had 2 helpers and wanted to get it done before they left. maybe that was part of why i slept through the night and/or why i feel a little cruddy this morning. we'll see what tomorrow brings.

i have some pretty rotten back pain today, but i think it's from lifting too much yesterday, because i am a stubborn idiot. house looks great though and smells much better.

i got soooo freaking tired at work yesterday. i felt fine after the infusion, did some quick food shopping, grabbed lunch, and went to work. but at 4 pm, it was like a bodyslam from the sandman. but i loaded up on cookies and diet coke and made it home. i'm kinda feeling that way this morning, i'm awake, but i feel ready to go back to sleep. if it gets too bad, i'll go home. or take a nap. my biggest fear is getting it a stupid car accident from falling asleep on the road. 287 is a death highway on a good day. it's like the nj highway system is out to get you everytime you get behind the wheel. i'm not going to survive all this and let some dumbass in a lexus take me out :) besides, i don't want anything to happen to my beloved truck. i should get an oil change today, she deserves it

remicade first dose

flagyl sucks

i always wondered before who those people were who stop taking their antibiotics before they finish the bottle. like, who would pay for a med and not take them? now that i'm taking flagyl, i understand. this stuff SUCKS!!! i wish someone could show me a positive test for something so I can say, oh yeah, I need to be going through this right now. instead of how i feel which is, yeah, you tested negative, but take this awful poison just in case. fuck/

i was sick sick bfore, bad enough to get scared and go to the hospital. and i had never given in and gone to the hospital for UC before. i'm the most anti-hospital person out there. the only time i've gone to the ER is when i blacked out at work, and kinda had to. usually, i'm the visitor/driver of the ER patient. my UC hospitalization was accdental -- i think my husband and GI doc conspired to trick me ;) -- they told me to go to the hospital for a stool sample since the turnaround at the quest lab was too long, found acute pancreatitis and kept me for a few days. i woulda been happy to stay except for the problems sleeping with the IV, the nurses that hurt me during BG readings, and that they really couldn't do anything for me besides gimme dilaudid. it was nice not having to figure out what to eat, and the bed was comfy and i was resigned to relaxing, not feeling like i should be cleaning up around the house or going to work. happy though, because without those couple days, i might still be trying to treat myself with diet and meditation instead of drugs.

THIS IS FUCKING WORSE! i take zofran for anti-nausea, and i took it 3 hours ago, and it's not working right now. why does stuff stop working at 4 am? i'm not sure i can go through another week of this. i want to flush the rest of the pills and pretend i'm still taking them. the side effects are worse than the uc. i guess if i could just lay around the house all day and take it easy, i'd be fine, but having to go to work? i can't sleep, i'm up all crazy hours, i feel miserable, i really shouldn't be around people. i'm afraid to start throwing up, but maybe i should just go do it and see if i feel better. i can't see, i can't think, my stomach is in knots, i'm still having crazy UC symptoms -- i feel worse than i did when i was in the hospital, and I don't have the luxury of taking more days off to sit around and wait to feel better. fuck. and this is the worst freaking timing too -- my scenario game i'm producing is this weekend, and Friday I need to do all the pregame setup, sleep over my teammates' house, then go all out saturday to rock the house. i can't be up at 3 am taking over their bathroom the night before the game. i should probably get a hotel room so i only make myself miserable :)

dammit. at least by friday i'll be done with flagyl. then it'll just be prednisone, which at 30 mg i'm not sure if it is contributing to the misery or not. i'm ok having roid rages as long as i'm not nauseous or having this insane stomach pain. i start remicade hopefully on the 11th, which i think means i don't have to take the pred past that date. i hope i never have to take flagyl ever ever ever again. this drug is evil. i'm not sure whether to eat, throw up, or eat something with the intention to throw it up. anything to just MAKE. THIS. STOP.

trip to the hospital

it's been a year of firsts. took my first day off from work due to UC, which i had managed to avoid up to this april. and yesterday was my first hospital trip and stay. though it didnt start out that way. originally i had a blood test scheduled on saturday morning. like an idiot, i went out friday night, drank too much, drank a few red bulls, and ate mcnuggets at 3 am, blowing my fast. so i rescheduled for monday. saturday during the day was horribly awful, and I considered going to the ER, but figured they prob wouldn't do much for me and i should just wait for my reg appointment on thursday. we called my gi doc, and he suggested doing a stool sample alot with the blood tests monday morning, and he'd see my thurs as scheduled.

fast forward to monday morning at the lab, and i'm good and fasting. but they can't do a sample and turn around results by thursday. so they suggest i go do it at the hospital. we go to the ER and get the blood tests, stool and urine samples. surprise pancreatitis! they admit me and tell me they are keeping me overnight. sent me for a cat scan and more bloodwork, and started me on iv steroids. i was kinda bummed, but i'm not the doc. i'm giving in to the professionals. obviously, the pancreatitis has been going on for a bit, and is beyond my control with diet, so it was good to go in.

the er doc was very nice and sounded like she had some gi stuff because she ws familiar with all the tests i've had to do up to this point. the er nurse rocked too, and i was put in isolation in case i had c.diff. they're taking cultures, which was a bit embarrassing because yeah, i still have poo shame. i guess if it looked like poo instead of slime from the black lagoon, i'd be less embarrassed. i'm like, sorry for being extra disgusting, but all the nurses are so nice here.

i also got some dilaudid which is helping with that weird random hip pain. had some x-rays to check that out today. ortho thinks it might be spinal or illobital band, or bursitis, but not arthritis, so i'll prob have a followup visit with them after i get out of the hospital.

so it was my first hospital overnight, and aside from the noisy iv machine waking me up, it wasn't so bad. i got kind of annoyed when i couldn't eat due to the pancreatitis, because i had been fasting since sunday night, but i finally got to eat today, which made it much much better. i have to stay again tonight, but i think i'll be more prepared this time. definitely feeling a little better, uc is not as active as saturday, but i'm paranoid it'll start up again as soon as i leave. another annoyance was that because i wasn't eating, they put me on a dextrose drip, which raised my blood sugar, so they gave me insulin. since i had a cat scan with contrast dye, i can't take the metformin for a few days, and since they're giving me steroids for the uc, that's gonna raise my blood sugar too. but i'm done with trying to figure this stuff out -- it's up to the pros to figure out how to balance ibd vs diabetes and i'll just do as they say. take my drugs, eat right, exercise. no more DIY medical attempts. probably less drinking and no red bull for awhile.

i have to stay again tonight, but hopefully can leave tomorrow. it's not bad being in the hospital, but it's boring and i feel weird bothering people for info and stuff i need. i'm less sleepy today, i got a little teary this morning, but i think i was just tired. i should sleep better tonight i hope

so i didn't want to go to the hospital, but it was definitely the right move.

NPO

please don't feed the animals... err.. patients

sick puppy

yesterday was 22 hrs of suck. i had a miraculous 2 hr break during the day -- wish i could figure out what i took/did to deserve that. i was this close to going to the er, but realized that they know trauma, and couldn't instantly fix something chronic. i know an instant fix, but it's a bit permanent and has quite undesirable side effects... so patience it is.

i have more annoying tests tomorrow and an appt on thursday. i always wonder how it could be possible for someone to be sick as much as i am, and still have trouble losing weight. i mean, if i'm gonna go through all this agony, can't i least drop a dozen or so pounds while we're at it?

our new fun symptom is pain in my left hip. it hurts to move in any direction. forget bending over. i can walk on it, but it hurts to sit. gonna be fun at work tomorrow. started up late last week and just getting increasingly bad. of course, can't take anything for it. and google is not helping, it just gave me scary new diseases to think about. i'm trying to remember when i did something stupid to hurt myself, but i'm drawing a blank. i did go dancing on it anyway on friday night, so that probably didn't help, but i can't spend my whole life in a bubble wondering when i'll feel better. sometimes, i just have to go out anyway and do something fun, to make up for all the not fun i have to do.