False alarm

Forget what I said earlier about having a great day. @ 6pm, things went totally south. I feel like my guts are trying to escape via the nearest exit. Luckily I made it home. But now I'm trapped in my bathroom.

Gotta say tho, I love my iPod touch. Wish the touchscreen on my verizon voyager worked this good. Didn't realize how much it sucked until I got the touch. Too bad iPhone is only on crappy AT&T. Not interested in the droid at all - too many bad memories from motorola and their craptacular phones. It's ok though, I use my phone mainly for txting, and iPod touch has wifi. The future is pretty awesome.

a week of happy moments

yeah, i'm not a naturally happy, optimistic person. when things are good, i don't reflect on them much. when things are bad, i'm motivated to complain about them :) so since i forgot to record my happy thoughts all week, let's catch up

MONDAY

did some grocery shopping after work and got to play with the zapper thing. it makes grocery shopping lots more fun. then we got yummy pasta from the local italian place, mmmmmm.

TUESDAY

finally found the h1n1 vaccine available somewhere, and made an appointment. yeah, tuesday was a rather forgettable day

WEDNESDAY

knitting was cancelled, but i did a bunch on my own. the yarn i'm using picked up some lavender scent from the handmade soap i had purchased from the same vendor, so it's very soothing. i'm calling it the aromatherapy scarf.


THURSDAY

while the workday was insane, one of my colleagues sent positive feedback to my boss, who sent it to my boss's boss, so i feel better about my recent job performance. gooooo me!

i also went up to my sister's and had fun digging through her halloween stuff.


FRIDAY

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!

relapse pity party

I knew the steroid-induced remission was likely temporary. i even referred to it as "fake remission" because I knew I couldn't take >20 mg steroids forever. but i'm still totally bummed out right now. i really hope the humira shot tonight makes a difference. that would be awesome.

i'm in a total relapse right now, even with 10 mg steroids. I just wanted enough to get through halloween, to enjoy my vacation from UC a little while longer. i'm hoping the shot tonight will give me the added boost to get through the weekend. if it does, that means we found the right med, even if we have to work out the dose. i may end up doing a shot once a week instead of every other week - my doc says this is pretty common since the dosing was studied on RA patients, and not UC patients. he thinks UC patients may need it more frequently.

if it doesn't work, he's going to refer me to a colleague of his in the city. i'm hoping it's not a surgical colleague, so far no one has said the S word. but if it is, hopefully he is associated with Mt Sinai, since that is one of the hospitals I'd want to go to if surgery ends up being the answer. after my experience in Local Hospital, I hope to never ever ever have to go there again for anything, definitely not a surgery that is fairly uncommon. i want the best i can reasonably afford - i'd hate to have complications and think it was due to me settling for the walmart of surgeons. i blame myself for everything with this damn disease.

happy thoughts for sunday

1. Surprise llamas! we went to Berry Meadow Farms yarn shop to pick up some fresh alpaca yarn they just got back from the mill, and they had an alpaca mom there with her 1 month old baby. omg, so much cuteness! we learned more about alpaca behavior, and the folks that run the farm were so friendly.

2. home-made warm apple cider... mmmmm, and she gave us her recipe! mmmmmmm

3. Steelers won! and I won my fantasy game, hooray colts D!

4. had some bad news on the health front, but i have a good teammate in my DH. he took the news calmly and already helped me develop a plan. he knew i was blue, and wanted to take care of me, even though he wasn't feeling well either.

5. finished my first sweater! yeah, it's for a 6 month old, but now i can officially say i've knit a sweater. it came out really cute too.

6. the alpaca mama was humming alot -- apparently they hum randomly all the time. so now DH and I started randomly humming at each other like llamas. he's weird just like me.

happy thoughts for saturday

lol, serves me right for starting something on a friday :) here's the happy thoughts for Saturday

1. today we went to the woods edge farm to see suri llamas and alpacas and pet some yummy yarns. i came home with gorgeous hand-dyed, hand-spun yarns. and everyone was super nice.

2. i got to feed the alpacas and llamas too. they are really smart. at first, we put the feed in our hands, and they ate it. then we noticed the bucket of blue frisbees that we could use as dishes. as soon as we picked one up, the entire flock ran over.

3. i met a woman who raises her own sheep, angora rabbits, goats, and 1 llama. she mixes all the fiber together and dyes it -- it's very lovely and it was so hard to pick one! i'll be making a gift for my MIL with it

4. after hanging out with the llamas in the rain, we were supposed to meet friends for game night, but we fell asleep! i love that my DH loves naps as much as I do

happy thoughts

I just read this great post over at Number Twos about one of his techniques, his Gratitude list. It's essentially counting your blessings, just in a digital format and a little less preachy/hokey than that probably sounds. since i'm inspired, I'm going to try to post one "happy thoughts" a day for a bit.

Most posts will be about specific happy moments in the day. Today's will be long and general because I'm in a generally thankful mood at the moment :) (even though I'm having kind of a rough day).

1. Fridays
2. the internet (UC would be even more challenging without hearing other folks and their struggles and victories in our giant virtual support group)
3. Cute Overload, I Can Haz cheeseburger, and related sites
4. google image search
5. my job & awesome coworkers
6. my flexible spending account
7. awesome health insurance from my spouse's company
8. friends and family, especially my sister
9. my gadgets (ipod, phone, ipod touch, humira pens)
10. that my Nana inspired me to learn how to knit and crochet
11. my kitties and my zoey
12. halloween
13. llamas
14. my beloved purple jeep that gets me where i need to go and helps me bring all sorts of stuff with me
15. and finally, my dear sweet hubby, who finally got a vacation from taking care of sick little me (thanks prednisone!) but spent yesterday helping mollie recoup after her trip to the vet for dental work. she did NOT make it easy for him! I expected her to be kind of docile and sleepy after waking up from anesthesia, but nooooo.... instead, she tried to eat the vet, her assistants, and my husband. and when that didn't work, she got sick all over the place for the 3 hours he had to watch her until I came home. He cleaned all of it and she was a cheerful dancing kitty by the time I got home. but she's so cute, it's worth it.

paranoia may destroy ya

i've been a bad, bad girl. I've been careless with a delicate digestive system :) i dropped down to 10 mg pred, so i'm a little nervous. soon the training wheels will be off and i'll be riding on only humira. i'm just nervous i'll go back to the bad old days... of 3 weeks ago. i had some dal palak yesterday, which was marked as "mild spice" but was also loaded with lentils and veggies. my stomach protested, as did the rest of me. dang, i've missed indian food so much... but it looks like i'm not ready.

also overindulged in sushi the last few days, and this awesome thing called sake bombs. so today i had some minor symptoms - nothing too alarming, unless you're paranoid like me.

work has been rather stressful, but this time around i'm feeling it in my head instead of my guts. not sure if that is better or worse.

yo-yo

about a year ago, when i was told I was diabetic, i weighed about 230. i went on a good diet and exercise plan, and whittled myself down to about 200. then i started my flare and ended up in the hospital in May with pancreatitis, and got down to 190. i stopped my good diet with all the fresh veggies and just tried to stick to low residue, cooked, bland soft things. i was pretty stable at 210 for the summer, then i turned into an anaconda and ate everything in sight, and am back up to 230. *sigh* back to the drawing board. but once i'm out of this flare, and i think i'm really almost done this time, i can go back to eating even better than I was before, and I won't be all tired and anemic this time around.

this was a pretty good week, but i had traveling pain. see, i had gotten used to the UC abdominal cramping type pain, but with the steroids, that's mostly gone. no, this week it started with upper abdominal pain. it started off like heartburn, then spread everywhere. i joked it was my pancreas again, but it just felt deep and central, it was really distracting and nothing made it better. it was simply awful. but it went away just as suddenly. then wednesday i woke up with the worst headache i think i've ever had. it felt like my ears were going to pop off my head. it was weird, because unlike the headaches i used to get where the pain was all on the right side of my face, this one was in the back of my head. then it moved down my neck, over my shoulders, and went away. now i just have a normal stress headache that tylenol can take care of (which is totally due to stress at work).

i realized i was feeling better because i feel less angry and despondent, and have less to bitch about in here. also, i picked up GI Monitor for my ipod touch, and where at the beginning of the month i was logging everything, the more normal i started to feel, the less i logged stuff. i guess it's not as important to jot down "everything normal, I feel fine" as it feels when it's "oh god the pain kill me now pleeeease"

i also joined up with that wearecrohns site, which was kind of weird. doesn't seem to be that much activity over there. i'll probably check it out again, it could potentially be a great site, it just doesn't seem to get alot of traffic. i pop by healingwell on occasion, but it seems like the same convos over and over, the same weirdos popping up with some herbal new agey bs "cure", and the same folks pushing rectal meds when after a point, rectal meds don't do much except take $$ out of your wallet. i think that's what sucks alot about UC -- there are so many variants so what works wonders for one person is gonna do squat for you. for example, if you have only a few cm of involvement, or proctitis, rectal meds will be a great help. start getting deeper, maybe enemas will help, but not so much suppositories. once the UC progresses past a certain point though, I think it's too far for either to be much help. same with asacol. i started off taking 2 pills three times a day. after a few months, my old GI increased it to 4 pills 3 times a day. that's 12 pills! plus rectal meds, I was taking 6.8 grams of mesalamine daily... for months! the copay for asacol is $50; the suppositories were also $50. eventually i was like, doc, are you sure i should be taking so much of this stuff? is there anyway to take fewer pills here? so he gave me lialda, which is basically 6 asacol stuffed into one pill so you can take it once a day. i took it twice a day. then i got supersick and landed in the hospital, but i don't think it was due to all the mesalamine -- i think the UC just started kicking my ass for real for some reason. it wasn't content to make me just miserable with D every day. Now it wanted blood, all of it, until i was dead. i changed GIs, my meds are still changing, but now i only take 3 asacol twice a day.

i met a woman at infusion once who was a patient of my old GI. she was on remi too, and he still had her taking 12 asacol a day. i wonder if he really thinks all those pills are necessary, or if he figures they can't hurt. my new doc's opinion was that since they are anti-inflammatory and may have some anti-cancer properties, it was good to continue taking them, but since my UC was so active, it really wouldn't be enough to get me into remission.

i guess i wouldn't care as much if it were the only pills i took all day, but i take alot of stuff. i take claritin and singulair for allergies, lexapro for ibs, metformin for diabetes. now i take pred and iron in the short term. i just finished procrit and started humira. also, i have the vsl 3 probiotic. i had to take over one of the vegetable drawers in my fridge for medications. and oh yeah, nuvaring, because at least some part of me has to be predictable.

wow, this post is just a mess. just a brain dump and not particularly interesting. but 6 months from now, i'll be able to look back and say, oh yeah, that was when i was just starting humira. look how far i've come.

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.

an ode to prednisone

Ah, my sweet sweet fiend.
My bitter brittle pill.
Light on the wallet but hard on the bones,
how I adore you and despise you at once.
My fear of you made me into a fool and weeks of summer were lost
chasing a monoclonal dream
when my relief was sitting silent nearby --
small, white, round and mere cents per pill.


back in July, i wrote myself a remission wishlist. since i've been back from FL and on pred, let's see how we stack up:

1. no gurgling monster sounds and feelings in my guts -- Check
2. no rectal meds -- Check
3. no accidents while sneezing -- Check
4. no urgent running to the bathroom -- Check
5. no waking up in the middle of the night to run to the bathroom -- almost Check
6. no anemia, no fatigue, no more zombiedays -- almost Check
7. being able to eat veggies, even if they haven't been cooked to death -- haven't tried yet
8. being able to eat slightly spicy things without praying for death -- almost Check
9. being able to eat seeds, fruit/veg with skins, whole-grain foods -- haven't tried yet
10. being able to not have my life revolve around what goes in and what comes out. -- almost check

The thing that sucks about experimenting with Remicade meant that I had to NOT take steroids in order to verify whether or not the Remicade was working. I wish I had just stayed on steroids all summer instead. The last 4 months were simply awful, and I feel dumb in a way. Like it could have all been avoided if I didn't rush to get off steroids so quickly. yeah, it's fake remission, but it is so nice to feel normal! except for the heartburn, extreme hunger, nightsweats and insomnia, i can forget there's anything wrong with me. i've reduced from 40 mg to 30 mg since i've gotten back, and so far i've had no accidents, no close calls, no agony at work. i'm not checking my blood sugar, because i don't really care right now. my hyper-vigilance about my stupid diabetes made me rush to get away from this drug. sure i'm waiting for the humira to work, and i'll keep slowly tapering off, but you better believe that if any of that UC garbage comes back, i'm stopping the taper. i'm not giving up this quasi-remission, no effing way.

the weirdest thing has been the complete inversion of color. seriously. it looks like i ate a box of green crayons and a bag of lawn trimmings. i think it's the iron supplement, but it's freaky.

new plan

visit went the doc went well today. steroids are definitely awesome, but only to be used short term. we're going to taper the steroids off during the few weeks it should take for the humira to work. 30 mg for a week, then 20, then 10, then 10 every other day, then done. by then, it'll be up to the humira.

if it works, awesome, we found the answer and we stick with it.
if not, less awesome. i'll go on short-term med leave and go through another round of tests to figure out why my intestines are being so stubborn.

my GI rocks - he sat with us for a good long time talking through everything and answering my bajillion questions.

also, we asked about probiotics, and he prescribed VSL#3 and gave me some samples. walgreens says aetna refuses to cover them, and they'd cost $150 retail. which is bullshit, because you can buy it direct for $80. so we think they didnt really submit it to aetna, or otherwise screwed it up. happens all the time with this location - i drive to a walgreens in another town rather than deal with the one in my town, but the one in my town is 24 hrs and i needed the steroid refill tonight. anyway, if it's covered, i'll get it. if not, i won't. i can't afford to spend $$ on something that might not work. i could always go back to making my own yogurt, though i've been eating so much this year i've made myself pretty sick of it. but i was going to try making almond milk yogurt once I had energy.

the steroid-remission has been a nice vacation from being sick. the mouth sores are gone, and the bleeding has stopped, so the anemia should be getting better. i'm going for bloodwork next week to get the numbers, but hopefully we're finally moving in the right direction. this feeling normal thing rocks. sure i still get nightsweats, and insomnia, and bad gut pain, and i'm tired, but it's more like having a usual stomach bug rather than IBD. much easier to deal with.

only problem i can see is that I get real grouchy and don't have alot of patience for dealing with bs. i had a bit of a swearing fit at the office today when our stupid program was broken yet again. can't make a habit of that. but i'm much less miserable than i was 2 weeks ago. yay!

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!