the plan as it stands

1. Continue Colazal
2. Increase 6 mp this week from 50 to 100 mg (waiting on CBC results)
3. Taper steroids from 40 mg to 35 next week
4. continue topical steroids 1 more week
5. doc visit jan 4th
6. ask about iv ciclosporin - probably do it in Jan
7. continue steroid taper and see if 6 mp works (4-6 weeks)

if 6 mp works, yaaay!
if 6 mp does not work, surgery. yaaay!

either way, i'm so effin done with this.

things i love

i love my heating pad. i'm at work only because i have this baby with me. yesterday i had a good day, but today i am in tremendous pain. i kinda wish i had two heating pads, one for my tummy and one for my back. my left side spot is getting kicked to hell by whatever demon lives in my intestines. i need an exorcism.

i love my ipod touch. i have a great app for logging my glucose readings, the bn ebook reader, the kindle reader, cbs sports, facebook, games, etc. I do alot of reading when my UC is active, and this is a lot more discrete than carrying books around with me.

i love my truck. this morning i was getting all down on myself and wondering what all this working is for. i feel like all i do is work to pay bills. i'm surrounded by people on public assistance, and sometimes i wonder if i should just throw in the towel and join their ranks. but i love my truck - it's a 2004 jeep liberty and it's purple and it's mostly mine. 3 more years and it's totally mine. if i didn't work, i'd still be driving that busted old elantra with the 2 hamster-power engine. so there's that. i love everything about my truck. the headlights, the color, the way it handles, the cargo room, the way the seats fold down, the way the back door opens. i love that i can open the glass only and leave the gate shut. i love the tire on the back, so when maniacs tailgate me, i hope the tire might offer some protection if they hit me (and the maniac might get a tire in their face). sometimes i think about getting one of those bike racks that attach to the tire, just to get folks to backadafuckup, but I don't have a bike :)

i love percoset. if i had any sick days left for the year, i woulda taken two of them and gone back to bed today. merry christmas to me.

i love my heated throw. we had the traditional present-stealing game with my husband's family for hanukkah, and this is like the bestest swap gift ever. i was so happy no one stole it from me. there was also a snuggie up for grabs, so that got more attention. but my god, i love this throw. it's somewhere between an electric blanket and a heating pad. it doesn't get as warm, but it's sooo comforting. i've been such a big baby lately. i'm so sad and miserable. i feel like nothing is ever going to be ok again. then i curl up with my blankie, and my kitty, and my knitting, and relax. the cat loooooves the blanket -- she contorts herself to get as much belly contact with the blanket when it's on, soaking up the warmth like sunshine. she loves sitting in my lap anyway, but the blanket acts like a hammock, so she can sleep on my lap in new and different ways. she's so happy it makes me happy to look at her. nothing bad exists in her world when she's on my lap with the warm blanket. her bliss is contagious.

i love my knitting. it's like a meditation. the more i knit, the less i can google symptoms, or research treatment options, or think about unpleasant stuff. my hands are busy, my creative brain is engaged, my logic brain is off. the yarn feels nice in my hands, and i feel proud of whatever little thing is developing in my lap. i get to take a tangle of string, and make something out of it, and it's amazing how people watch and compliment such a tiny thing. total strangers say such nice things about the simplest project, and i don't know, i've seen people get happy and excited to give me a compliment about my knitting. it's weird, maybe it reminds people of their nana that knit, or it's cute to see someone knitting something by hand when you could go to target and get a hat for $5. it's quaint and unusual. then i like to give away the stuff i knit -- this christmas is all about hand knitted things. i can't believe how much i knit in the last 2 months. a pair of wristwarmers for chickie, a scarf for mom, a shawl for mom in law, a hat for sister's boyfriend, a hat for sister's boyfriend's kiddo, a hat for husband, a hat for me (which was supposed to be a hat for husband, but was a lesson on how NOT to knit argyle, and is already unraveling), a sweater and hat for husband's cousin's baby, a hat for poppop, a hat for my uncle, a beret for my aunt, wristwarmers for me (frogged), a hat for me (tempted to frog). i'm waiting for new needles to make fingerless gloves for husband, and in the meantime i'm thinking of starting the wristwarmers for myself again. i bought this awesome alpaca yarn, and met the actual alpaca that made it!

i love llamas. she was so cute, and she had her little month old baby with her when we went to the farm store to buy the yarn. it's from berry meadow farm -- they save the fleece from each animal each year, and once there is enough, have it all spun into yarn. so you can pet the hanks and see which alpaca it came from. it's so cool. there's another cool llama farm by me that has suri llamas and alpacas, wools edge, where i got the yarn for my mom's scarf and my hat. it's soooo soft and silky. i usually work in easy-care for yarns, like acrylic and wool-ease, so that everything can go in the wash. especially baby stuff. don't see a point in making a baby blanket out of something that needs to be hand-washed -- gotta make things simple for mamma. plus, i'd rather the blanket be durable enough to get tossed in the washer and dryer, and dragged around, and spit up on, and washed again, rinse repeat. speaking of, i gotta get started on more blankets.

Remission vs cure

I've been thinking alot about surgery. It's funny to think that I'm lucky that there is a surgical cure for UC. no colon, no uc. yes, there might be other complications and details to work out, but from what I've been reading, a j-pouch is better than a wigged out colon. i'm just trying to wrap my head around the whole hole issue -- if the j-pouch fails, can i handle having an external setup?

i'd kinda figured i'd end up having surgery, probably 10 yrs after diagnosis. this is all happening really fast. but i don't want to put off surgery too long, then risk more complications from being in worse shape. i guess i'll talk more to the doc on jan 4th and maybe see if he thinks i should meet with surgeons or something now to discuss more about surgery as an option.

hubs criticizes me for googling things, but i consider it research. i'm not an idiot -- i know how to read journal articles. I'm looking at gastroenterology journals, not freaking ivillage posts. whatever. it's my body and my mind. and the more I read, the more I realize that surgery is probably the way to go. i just have to decide if it's worth trying cyclosporine first, or 6mp longer, or just skipping that part and scheduling it up. there's only so much more life i can afford to miss.

plus, getting hit with the 6mp truck actually helped. i'll go for bloodwork next week, but i really haven't felt right the past few days. like super really exhausted. plus all the flushing and puffiness from the steroids... is it worth wrecking other body parts because my colon is all wonky? my immune system has decided my guts don't belong, maybe i should listen? my large intestine is basically getting voted off the island, kicked out of the house, it is the weakest link.

anyway, from reading this article, i just don't know if medical remission is in the cards for me. it sure doesn't sound good. and even if the ciclosporine and 6mp work, how long will it last? i'll still have the time bomb. i'll still have the bazillion pills. i guess i need to do more research. i need to know the average life-after-surgery experience, the best and worst case scenarios, the what i can't and can't do with no colon. like, i know if i'm on long term 6mp and whatnot, i still can't drink, i still can't eat spicy foods, etc etc. but what about post-surgery? i mean, i realize i can't go out for thai food and margaritas the day after surgery, but what about 6 months? a year? 5 years? will i be looking at other surgeries in my 40s? will i be looking back on my 30s and wondering why i let them cut me apart?

wipe out

not sure why, but after two nights of some of the best sleep i've had in a while, i'm completely exhausted. i keep running out of breath when i try to walk and talk at the same time, and if i stand for long periods, i get sweaty and weak. maybe this means the 6mp is kicking in. i'm just sooo tired. i can't wait to go home and pass out.

sooo hungry

i can't believe how hungry I am vs how much i've eaten today. I think it's funny that I'm 100 lbs overweight, yet malnourished. my body is just programmed for pudge, like it holds on to all the fat and lets everything else fly. last night, i took all my night meds and settled in for sleep, and got this crazy craving to go back in the kitchen to eat. if it weren't for not wanting to risk screwing up my, ahem, topical steroid application, i woulda heated up the leftover chicken and gobbled it down. then each time i woke up at night, i was like "mmmm, chicken" and had to remind myself that if i ate anything, i would definitely not fall back asleep.

so according to my assigned diet that i was on before this flare started, i should be eating about 1500 calories a day to survive. and i was surviving on that just fine before i started slowly bleeding to death and had to go back on steroids. this is what i've eaten today, and i'm still hungry.

everything bagel with cream cheese (1.5 -- the deli guy dropped half of the original bagel on the floor, made me a new one, then also gave me the half that didn't fall)
banana
wendy's homestyle chicken filet sandwich (forgot to pack lunch and had meeting)
french fries (i'm naughty!)
unsweetened iced tea
boost shake
special k protein bar
a bazillion glasses of ice water

and this is after yesterday's glutton fest, so it's not like i'm doing that eat like a snake thing where you gorge then starve. no, i'm a freaking stomach with legs. i'm absolutely sick of myself.

me: 0 insomnia: 1

i should've done this each time i've surrendered to insomnia. usually i wake up in the middle of the night, roll around trying to get back to sleep, and eventually get up and watching stupid internet videos until i get tired again. or play bookworm. or look up knitting patterns. or google things and scare the bejeesus out of myself. i've mostly broken that habit, but i used to be really bad.

back in may, when severe pain in my left hip used to wake me up at night, i googled myself into thinking i had avascular necrosis. and this was before i had gone on steroids... ha!

i've learned nothing good comes out of google after 3 am.

my insomnia is always worse when i'm on steroids. and now that i've been on 40 mg for a few weeks, i'm falling back into that pattern. i used to have trouble falling asleep, then also have trouble staying asleep. part of it is dreaming about trying to find a toilet, then waking up having to go like mad. luckily, that part seems to have tapered off. i expect to wake up around 3 am to go, and most of the time recently, i can get myself back to sleep. but after about a half hour, if i can't get back to sleep, the thoughts and worries start up, which makes it futile to keep trying to sleep.

the other physical component is the night sweats. i feel like my veins are full of lava. my skin is cold, but inside i'm on fire. i wake up covered in sweat -- my choices are to lay there and try to sleep anyway, or get up and change and let the bed get cold. then i throw a blanket over my half of the bed and try to sleep on top of it.

even if i do manage to fall back asleep, then i wake up hourly. at least until it's time to get up for work, then i can sleep like a log. absolutely perverse, i know. there's just something about 7, 8 and 9 am that seems made for sleep.

so to help me sleep, i have some percoset. they work wonderfully. my pain goes away, i feel nice and relaxed, i go to sleep when i want, and i stay there. unfortunately, since they can slow down the colon, it's only an emergency solution. Dr I says not to take them if I can avoid it. and I'm trying. He suggested benadryl instead. me and benadryl are good friends from Remi days -- take one of those, and I get nice and relaxed and would probably have slept during infusion if I weren't sitting in a doctor's office getting my blood pressure and temp taken every 15 minutes. so last night i took benadryl with the night meds and fell asleep pretty quickly. however, i am now up at 4:30... too late to take more benadryl, yet too early to be awake for my taste. I woke up with a start at about 3, because I was having another toilet-search dream and afraid I had an accident. Luckily, i woke up in time, just had to pry off the cats and blankets and run to the bathroom. but that really scares me about taking sleep meds. i'll try again tomorrow -- if i can get into a rhythm, maybe it'll work better.

i always have teh best worries at 3 am. i wish i had been logging them. for example, tonight's concern is how the hell can i have malnutrition and weigh 230 lbs? but the bloodwork don't lie -- i need protein stat. i guess it's from all the blood loss and D, but still, I thought i was eating pretty well, all told. Maybe a good amount of empty calories (munchies at 3 am doesn't help, and there's not alot of options), but i figured I'd be fat and well-nourished if anything. there was that brief point earlier in the summer when i was doing great watching my weight and didn't want to eat anything. but then i discovered that mcdonalds tastes wonderful. it was the only thing i would eat, other than rice krispies. i gotta stop that. but it is 4:40 am, i'm tired, and my kitchen is not well-stocked (being ill makes it impossible for me to meal plan, shop, and cook like i used to). my choices are whatever carb-loaded snackies are laying around (which I try not to buy, but i'm weak) or getting in the car and going to the only place open (McD's). and no, i can't eat salad. raw veg and me do not get along at the moment.

i guess i could cook up some frozen veggies from my freezer, but that is completely unappetizing.

so i'm considering drinking protein shakes to fight the malnutrition, but i'm not sure if that's the right way to go. i'll probably google that and hope for the best.

i started most of my new meds tonight too. that's another thing I should go back and update -- my pharmaceutical adventures. i've posted quick lines on facebook, but it would be good to have them all here too. it just amazes me how big some of these pills are! the apriso was pretty bad, the colazal is about the same, but at least you can't hear the granules shaking around in there like some kind of medical maraca.

so i go to walgreens today to wait for my 6mp and pick up my colazal and cortenema. they tell me 20 minutes. i expected this, and bop around the store to waste time and pick up random crap (christmas balls, mousse). i still don't hear my name, but i wait by the pharmacy area and play bejeweled. for 1/2 hour. now i see this lady come in after me, and get her script like 10 minutes later. hold the phone... wtf? ok, maybe they are waiting for insurance. i wait in line and ask if my stuff is ready. IT'S BEEN READY AND THEY NEVER CALLED ME! fuckers, this happens every time i wait for a prescription. dude, it says fucking "waiting" on the bag, and you've been watching me sitting in the pharmacy area for 1/2 hour.... think it might have crossed your mind to ask what i was waiting for? they need a system like quickcheck has for sandwiches or a "now serving" display like a deli. or maybe a "departures" display like an airport. just have a queue of effing names and the status, like "amanda - pending" or "amanda - ready" or just initials or something. frack! then, they couldn't find the cortenemas that i had dropped off the day before. having gone through this with the rowasa, I asked if they had a special area for oversize prescriptions... yup, that's where it was. *sigh* it's not their fault, I'm just on weird drugs. when i know it's refrigerated, i usually mention that when i pick it up (though me and humira broke up, and vsl and procrit were only short term, i only have to remember it for nuvaring now). but damn, that sucks about being sick is all the waiting for shit. waiting for the receptionist to pick up the phone. waiting for the doc to call back. waiting for the lab to stick you with needles or probe you with somethng. waiting for the results of said probing. waiting in the ER. waiting in the doctor's office. waiting for freaking prescriptions. waiting for the meds to even work. it's expensive and time-consuming being sick, and although i know it's been alot worse, in some ways there's still so many ways it could be improved.

i got so mad today -- back in march i was taking 16 asacol a day, levsin as needed, and rectal mesalamine each night (which i hated). i switched to lialda and discontinued rectal meds. i wanted remission but didn't want to take 16 pills a day or stick stuff in my bum. now here i am, 8 months later, and the med plan is now 9 colazal, 2 6mp, 40 mg steroids, and steroid enemas daily. where's my freaking partridge in a pear tree?

How to Drive to Mt. Sinai Hospital

Your best bet is to just NOT DRIVE! Parking by the hospital is impossible

1. They'll tell you there is a parking deck on 99th and Park. Don't count on it. It is probably full. They'll offer to double-park your car and you'll have to leave your keys with the attendant.

2. They'll tell you there is street parking. Nope.

3. The garage attendant will tell you there is additional parking at 105 and Madison. That lot is probably also full, or only taking Monthly Permits.

"But taking mass transit when you're sick sucks!" you say. Yes, yes it does. There are no bathrooms on the subway and no usable ones in the stations either. There are bathrooms on NJ Transit trains, but they suck and those trains are slow as hell.

So what do you do?

1. Drive to Hoboken. Park in the deck. Take the PATH to the first stop in NYC. Jump in a cab up to 98th and 5th.

You might consider taking the PATH from Jersey City. Don't. It takes twice as long.
You might consider taking the PATH from Newark. Don't. It takes 4 times as long.
You might consider taking the ferry. Don't. When you are outside of rush hour, you'll be waiting around forever for a boat. When the ferry stops running, you'll be left with a useless ticket. Stick to the PATH and its 24 hour goodness.

2. Get a designated driver. Ask them to drive you up, drop you off, go entertain themselves somewhere else, then pick you up. Your designated driver is a person in addition to the person you want to come with you to the appointment. Your driver will be unable to join you at Mt Sinai unless they miraculously find a parking spot.

3. Rent a limo
This was hubs' idea. I think he was only half joking