Wednesday, December 30, 2009

Next year and next decade has to be better than this one

Feeling kinda pissy about this crap year and this crap decade, allow me to wallow in negativity a bit as I bid a fond farewell to this blasted decade and revel in flushing it down the toilet where it belongs. There will be other times to remeber the good tomes. This is not one of them. In the new year, I'll look back and focus on the good stuff, because only the good stuff is invited to come with me to 2010. The rest of it gets two middle fingers straight up after I dump it into the gutter and drive away.

2000: bush elected

2001: easy one, fucking terrorists blew up my city, made me afraid to open the damn mail, made everyone a bit nutso.

2002: dad dies while all these other assholes get to live

2003: (redacted)
2004: bush re-elected. Lose faith in humanity
2005: start having weird stomach issues. After a bazillion tests, told it's ibs.
2006: migraines and sinus infections won't go away. Have holes drilled in head.
2007: Ibs not actually ibs. A bazillion tests later rules out crohns, it's ulcerative colitis.
2008: diabeetus.
2009: spent the year as a guniea pig enduring the ulcerative colitis flare from hell. Sick enough to miss a bunch of good times but still well enough to work. I need a break - either let me be totally healthy or totally sick. Enough with this in between limbo crap. Maybe this is purgatory.

- Posted using BlogPress from my iPod touch

Tuesday, December 29, 2009

out with the old

i have a tendency to hang on to things too long. a bit of a packrat, maybe some hoarder tendencies, but it's an overdeveloped sense of "waste not, want not." i hate not having what i need, so i get nervous about getting rid of things in case i need them later. i'm working on it.

anyway, this of course extends to drugs. being chronically ill with a new disease of the week, i tend to stock up on things that i end up no longer needing. it feels so good to throw it all out. last week, i threw out a metric ton of mesalamine. bottles of asacol, samples of lialda, packages of canasa, and my favorite thing to throw out, those goddamn rowasa enemas. i hated those things. always cold, always hard to keep in, always making a surprise appearance the next morning at work if i made the mistake of sneezing. fuck you, rowasa. i hate asacol too - taking 16 of those damn pills everyday, then they look completely intact on the way out. i knew they weren't, but still, it bothered me to see them apparently survive, without actually making any difference in the UC symptoms i was experiencing. also, i have a lot less gas now that i don't take them. coincidence? perhaps, but if not, damn, all those noxious gas attacks of the last year could have been avoided if i went on colazal sooner. fucking asacol.

also disposed of the gigantic sharps container i had to get for the humira pens. i have another smaller sharps container that i bought, thinking i could use it for my procrit needs, diabetes lancets, and humira pens. but the humira pens are like the size of bananas and need a hugemongus sharps container. luckily i got it free from the myhumira site, and could've shipped it back to them, but my personal emt took it over to the hospital for me to get it out of my way. that thing was huge. it's nice having the room back in the bathroom for important things like mousse and saline solution.

i also finally tossed all the advair i haven't been taking since my sinus surgery. not that i've been running or doing anything physical, but i haven't had an asthma attack either in over a year. buh bye inhaled steroids.

so now my bathroom looks a little less like a sample closet.

i'm almost done with the steroid enemas, which were way less horrible than the mesalamine ones. and they were actually effective. i'm reducing the pred from 40 mg a day to 35 a day -- woo hoo! i'm sure the doc is going to taper this nice and slow, but i'll be happy to be off those damn things too. i'm so tired of flushing, and sweating, and being puffy and irritable, and not sleeping and having heartburn and being nauseous. and last night was fun, throwing up in my sleep! that's a new one. fuck you prednisone.

while we're tapering the steroids, i also increased the 6mp from 50 to 100 mgs. my bloodwork looks good so it was time to ramp it up. still probably not going to be effective for another 4 to 8 weeks or so, but at least i have the first month down. i've heard this one called the "food poisoning pill" by some other folks that did not tolerate it, so we should know pretty quickly whether or not i can tolerate it. unlike the pred, who used to be my friend but is now like a college roommate i can't stand. i can't wait until the semester is over and they move out. i know it helps me hold down a full time job and stuff, but damn, sometimes i wonder if it's not worse than having UC. i'm such a grouch right now.

i do enjoy throwing things out. it's a good time of year to get rid of stuff. i have too much stuff in the way of what i want, and physically chucking stuff out of my way has been very satisfying. next i'll be chucking a bunch of stuff out of my second bedroom storage room -- books, games, paintball gear, clothes, etc. just stuff left over from who i used to be. gotta make room for new me, and my treadmill. gotta get all this pred bloat off me asap!

Monday, December 28, 2009

article of the day

Found this on medscape - great summary of UC and overview of surgical interventions, and when to go for surgery.

Ulcerative Colitis: Surgical Perspective

bonus: researchers from the University of South Carolina... GO GAMECOCKS!!!

The big question for my next doc visit is should we do cyclosporin A. I'm thinking we should, just to make sure we did eVERYTHING medically possible, but I don't want to put myself in worse shape for surgery. however, i'd like to totally wean off steroids and schedule surgery to be as non-disruptive as possible. so i'm thinking the 6mp/cyclosporin treatment as not so much for remission, but just as a bridge to surgery. i guess i should write down my questions for my visit on the 4th and take it from there. i just want to stop taking steroids - sure they are effective, but the side effects suck ass. but i don't want to stop taking steroids at the cost of not being able to leave the house, unless i'm doing the surgery thing anyway. it's all about timing now.

Sunday, December 27, 2009

Happy holidays!

I've been having a great holiday thanks to my awesome family, great boss, and fab new doc ( and percoset). I've been a lot less grinchy this year despite what this blog might reflect. Part of it must be not leaving the house much, so I avoided crowded stores, Xmas music everywhere, travel, you know all the stuff that is ok in small doses but adds up quick. Also, i've been so physically miserable, my standards are totally lowered. Like most days I had bleeding, excruciating pain, embarassing bowel activity, and pred side effects. But no more weekly needles - yay! And if I get a day with little to no blood- yay! And if I'm zombies out but not in pain - yay! I'm more accepting of cancelling and not making plans. My sis and her friends went out dancing last night. I would've loved to go. 3 months ago, I woulda forced myself to go. But instead I went home to knit and watch Johnny depp movies. And had a great night. After surgery, I'll be back out on the dancefloor. By my 31st birthday, I hope to be free of all this mess and be even better than before!

Last night was awesome. Had dinner with mom, sis, my godfather, my aunt, hubs, and a good friend who's like a brother. Fun convo, good food, they loved the hats I knit for them. My sis showed them the hat I made fir her bf's daughter and my mom kept going on about how impressed she was. It was my first fair isle attempt and it came out great. Her family thought I bought it. I love knitting. I get to enjoy creating something and the recipient gets to enjoy receiving something.

I guess the lesson of this season is to be gentle to yourself. People make themselves nuts with so much unnecessary drama. Having a physical limitation has forced me to slow down and take better care of myself. Sure, it's less exciting, but I give myself more time to be happy with simple things. I remind myself that this is all temporary, good and bad. It helps having a plan, a goal, a light at the end of the tunnel. And instead of shouldering it alone, I've reached out to my family. Now that I have a plan I've accepted, it's easier for me to tell them everything and not worry about upsetting them or making them worry. It's beens so hard for hubs watching me every day and not bring able to really help. I didn't want to put more people thru that if I could avoid it. It's weird being seriously ill with something nonfatal. It's like, yes I'm totally sick as hell, but I'll just suffer, no dying. I feel like such a complainer. It's not like it's cancer or something terminal, but it sucks being a lab rat for so long. I'd just like to be a normal human again. Ok, normal-ish :)

So 2010 is already going to be better than 2009. I love our prez - thanks to the CARD act, my credit cards can't screw with my apr and due dates anymore, thanks! When Obama comes on the news, I don't have to cringe. When I see the first lady, I see an intelligent powerful woman, not a botoxed out stepford wife. Health care reform might not be all it's cracked up to be, but can't be worse than what we have now- and at least if I lose my job and need to get coverage, I should be able to even though I'm a sick puppy. Healthwise, process of elimination is almost complete. I may be out of options to try, but that also means the experiment is almost over. Recovery from surgery opens an entirely new chapter. I'm hoping that it will be like when I finally had sinus surgery - no more migraines, no more sinus infections, no more asthma meds. Plus, I'll never have to do a colonoscopy prep again - yay!

- Posted using BlogPress from my iPhone

Thursday, December 24, 2009

so sleepy

yesterday was a rotten no good pain filled day, so today is already much better :) i'm just so tired. like, i haven't slept in days. like too tired to have fun. i just wanna sleep. but i'm stuck at work. i'll keep myself long enough to make it to the end of the day, then go home and pass out. that sucks. but at least i have a nice 3 day holiday weekend to enjoy -- i get to be awake and not be at work, woo hoo! or in a doctor's office or hospital, woo hoo!

i miss having a life, and making plans, and going out to do things. all i want to do lately is be home, be safe, be warm. be near a bed for when i'm too tired to move. i don't even like to make plans anymore, because i always cancel. this weekend i'll push myself -- mom's tomorrow, dinner with the family on saturday, folks coming over for football sunday. gotta get the house presentable. and if the pain comes back, i'll knock it out with percoset because the most challenging thing i'll have to do on sunday is decide how many pizzas to order.

i'm trying not to get too down, but i don't have enough energy to keep cheering myself up. i'm so fake happy and cheerful and smiley at work. it's alot of work! then of course around people this weekend, i'll be happy too. but when i finally get alone, it's hard to keep the bad feelings at bay. good thing i got all those goofy cat apps and vids on my ipod touch. if it weren't for surprised kitty, i don't know how i'd make it through the day.

Wednesday, December 23, 2009

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.

Wednesday, December 16, 2009

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?

Tuesday, December 15, 2009

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.

Monday, December 14, 2009

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)
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.

Friday, December 11, 2009

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?

Tuesday, December 8, 2009

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

nyc trip

quite a busy week! i've been remiss about posting, but i've also been getting a good amount of rest, and knitting, and if i could find a blogger app for my ipod touch, i'd probably use it, but i keep forgetting to look one up.

anyway, last sunday i went to the jets/panthers game and had a blast before suddenly blacking out in the 3rd quarter. the on-site doc checked me out and made sure it wasn't a stroke, and cleared me to go to the hospital near my house, so my dear friends did not have to wait in the ER with me all night. Dropped them off at their cars, headed over to friendly neighborhood ER with my personal EMT. So we hung out there for a few hours and did bloodwork, head CT, chest x-ray, cardiogram, etc, to rule out anything more serious than ordinary syncope. and of course, everything came back clear. went to doctor J on monday morning, and she attributed it to bad food during tailgate, drinking beer, and taking prednisone while being diabetic. i was minorly scolded, and sent home to rest, with a note to go back to work on tuesday.

Meanwhile, Dr. G gets me an appointment with Dr. I at Mt Sinai -- who can see me almost immediately and actually takes my insurance! So I had to cancel my appointment at RWJ and still have to cancel my appointment at UPenn, but now I don't have to wait until March, woo hoo!

I see Dr. G on Friday, and from not sleeping and just generally falling apart, I got all weepy and emotional. Probably because we had the appointment in the stupid infusion room. All those needlesticks and hours of Remi infusion for naught. bah, at least I learned to not let them stick me in the wrist for ivs! i got nice juicy veins in my arms, use them!

i do have great veins, and i'm nice and pale so you can see them pretty easily. i look like a freaking road map, with lots of points of interest.

The best part about Dr. G's visit was getting some painkillers. ohhhh, what a nice vacation from pain. i love you little guys :)

Saturday I took advantage of my fake remission and rearranged the storage room, put up the holiday decorations, went up to my sister's house, got my hair done, hiked over to my mom's rescue squad holiday party in the snow, and drove home. meaning, i totally overdid it :)

sunday was restful, but i was very anxious about my appointment. it seems kind of silly now, but i was afraid of forgetting something important or getting pushed into surgery, or getting dragged through another multiple-months long experiment. or that the guy would be mean. or want to do a flex sig. i wasn't really worried about them keeping me in the hospital -- at this point, i really didn't care. at least if i were hospitalized, i'd feel like we could actually work on the problem, i could get some rest, and be absolved from trying to balance everything all at once. i was almost looking forward to getting to be just full-time patient for a while (even though it sucks, I think it's necessary sometimes to just stop trying to be normal all the time)

anyway, Monday morning we ran some errands and drove to NYC. a truck flipped over on the helix, so cops were directing traffic, but luckily we got there right when it was mostly cleaned up and they had just reopened the tunnel. The other drivers tried to kill us, but eventually we got to Mt. Sinai in one piece.

I spent like 2 hours with Dr. I. He rocks! great sense of humor, great personality, really knows his stuff and how to explain it to me without making me feel completely lost or completely infantilized. I guess I came across as reasonably informed about my condition and options -- he did speak to Dr. G about my case, and Dr. G was very cool about giving me journal articles and things to read.

it was the first time a doc had brought up surgery as an option, and i really loved the way he did it. he asked if I had considered surgical options at this point, because we'd been dealing with this for a while. He made me feel very comfortable about surgery as an option -- pointing out that unlike other inflammatory conditions like RA, UC can be cured surgically. It's not a punishment, it's a friend and an option to consider. That made me feel better. Also, he seemed very confident that I would not need an external situation, and if i did it would only be temporary. Which is a BIG part of the reason I wanted to see a GI at Mt Sinai -- they have great surgeons that do all the cool one-step and laproscopic procedures. It was really nice that something finally went right in all this UC craziness.

So after a long discussion and review of my copious patient records, he suggested trying 6MP. We had skipped trying 6MP because I have low TMPT enzymes, but he said after failing Remicade, it was worth a shot. Also, he's discontinuing the Humira, since I'm not responding to it either. I have to wait 5 weeks to get it all out of my system, then we're going to do IV cyclosporin to help jumpstart remission while we wait for the 6MP to kick in. 6MP can take 2 to 3 months, and he understood that I'm not really in a mood to just wait around for it to work. He's continuing the steriods and adding steroid enemas and changing from asacol to colazal. he warned me about not taking the percoset unless i have to, because it can slow down the colon and cause toxin to buildup. this scared the crap out of hubs, but i'd heard this before. so i'll save them for when it's really really bad pain. i can't take them at work anyway. he suggested benadryl to help me sleep, because the pred gives me crazy insomnia and he doesn't want to risk it with me taking narcotics or a sleeping pill every night to sleep because they slow down the colon. makes sense to me.

but before we start the 6MP, he wanted to check on my pancreas, because of my surprise pancreatitis in May. so they send me down to radiology and made me drink a berry-barium smoothie (not that bad actually) and stuck me in the machine for a abdomnial CT. they did it with and without contrast. the contrast dye is soooo freaky! it's weird that it has a taste and you can feel it warming up your veins.

once that was over, we finally got something to eat and headed back home. the other drivers tried to kill us again, but hubs is a fabulous driver and we made it home safe and sound. now i'm just waiting for my CT results, and should start all my new meds this week.

it feels nice to have a plan and some hope and faith again.

Friday, November 27, 2009

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!

Thursday, November 19, 2009

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.

Monday, November 16, 2009

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!


Friday, November 13, 2009

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!

Thursday, November 12, 2009

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.

Monday, November 9, 2009


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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Friday, November 6, 2009

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 :)

Monday, November 2, 2009

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 :)

Friday, October 30, 2009

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


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.


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


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.


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.


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!

Wednesday, October 28, 2009

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.

Monday, October 26, 2009

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

Friday, October 23, 2009

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.

Monday, October 19, 2009

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.

Thursday, October 15, 2009


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.

Wednesday, October 14, 2009

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!

Friday, October 9, 2009

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.

Tuesday, October 6, 2009

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.

Friday, October 2, 2009

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!

Thursday, October 1, 2009

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!

Tuesday, September 29, 2009

6 shooter

back in the day, getting 6 shots meant kamikazes, lemon drops, and red-headed sluts. one day, I'll get back to the bar :) this week, it means 1 shot of procrit tonight, 4 humira shots tomorrow, and a flu shot saturday. maybe that's why i feel a bit prickly

Monday, September 28, 2009

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.

Friday, September 25, 2009

$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!

circus girl without a safety net

yes! today i had my conference call, and right beforehand realized i had no safety gear with me, and though I was on the phone for a solid hour, I had no problems! it went great, they were funny and loved the site. it was a happy friday.

this week has been so hard, i am sooo tired. i've gotten silly, like i'm too tired to be grouchy anymore. it's all just absurd and giggly. i can dig this.

i'm in so much pain though, i feel like someone is trying to rip my spine out, or like it's a wriggling serpent trying to escape on its own. but i guess this is better than yesterday - back pain vs abdominal pain, which one to choose? at least this one makes me get up and dance in place, instead of run down the hallway to the ladies room. yes, i have a spazzy little pain dance that i do in my cube to help shake the pain. doesn't really work for long, but it's all i've found that helps.

doc appointment is next friday, but he thinks i can start humira immediately. i should be able to get my loading dose on wednesday. they just have to check since I had remicade last week. then i get to stick myself 4 times, yippee! at least it'll be over quickly. i hear humira comes in prefilled syringes -- score! really hope this works.

so with all the drama from last week, i am no longer allowed to work from home. i need to just call out sick if i can't make it in and get docked at the end of the year. kind of a bummer, but i've just been getting worse and worse lately, this is a blessing in disguise. 4 months ago, my mind was sharp though my body was, um, occupied and anti-social. now the mind is worn out too. maybe it's just oxygen-deprived :) having the flu/cold/ninflu didn't help either, but i think i finally got over that. not coughing up as much stuff anymore. gotta go get a flu shot soon, then the swine flu shot as soon as it's ready.

it's funny, we had a meeting today because my boss is taking a trip to a city that has a few cases of swine flu floating around. there's apparently disaster recovery plans in place in case people start getting sick in our building too. everyone reassures themselves that it's not a big deal because we're all young and healthy. but i have "an underlying medical condition" *cue dramatic music* i do kinda sorta worry that the next flu/cold/infection I get will be a bit more serious, but i don't want to be nutso about it. every season we all pass around the same cold/flu/bug, especially the ones the parents catch from their kiddos. kiddos are a huge disease vector; good thing they are cute. i figure even if i got swine flu, i'm at the doctor so much that i'd get plenty of treatment and not die or anything, just be miserable for an extended amount of time. not like that's anything unusual for me, lol! oh well, time to build the bubblesuit :)

"can't hear you, i'm in my bubble!"

Wednesday, September 23, 2009


Not only is my illness "invisible," it makes me invisible. i've missed alot of fun activities, birthday parties, family events, friend nights out, sister nights out, work functions, paintball games, vacation plans, etc. If I do show up, I end up having to leave early. I'm usually asleep or in the bathroom. I felt like a ghost this summer.

I miss Chipotle, sushi, thai curry, and roti cannai.

I'm really happy if I get to switch to Humira instead of Remicade. Those 3 hr iv infusions kinda suck. And I already have a totally rad sharps container for my procrit needles.

mucus came back today. that 4 day break was nice while it lasted.

the best thing about UC is reading UC blogs by English folks - I love their manner of speaking/writing and turns of phrase. everything sounds better in a British accent.

counting blessings; weighing options

I was feeling very angry and very depressed yesterday, then I came upon this story via boingboing. then i realized things for me aren't so bad. This is a great story.

I find that so many people can overcome physical discomforts for their passion. I've become so passionless. I wish I could find that something that I would walk through fire to pursue. like my aunt J. she grew up in poverty in a trailer park, and battled her way through school to become a teacher, eventually earning her masters and gaining accolades as a top teacher in her state. she had breast cancer in her 20s, and the treatment gave her lymphoma. she also got married, raised a wonderful son, traveled, went to Gamecocks games (home and away), and never stopped pushing herself and everyone around her to be better, happier, more alive. She helped my dad when he was sick and was a reliable friend to other folks dealing with cancer. She was inspirational to her last breath, and then some. I need to cultivate my inner flame instead of feeling so burned all the time.

I've really been overly focused on all the things I've lost, or am losing, though honestly -- most of these losses are hopefully temporary. it's ok to be sad a bit, but I need to snap out of it.

UC has finally stabbed its dark claws into my career. Maybe that's why I'm so freaked. I've always been an ambitious over-achiever, and I think that what just went down has clamped a limit on my future prospects in my current career. My job means alot to me. It means alot to be to have a successful career as a woman. I could in theory support myself. And all that is endangered now because of the toll of the last 4 months.

I really believed the Remi would work, but I feel worse in some ways than I did back in May. I'm back on steroids and will probably try out Humira, but should I just jump ahead to surgery? If I do it this year, everything is covered and ready to go - deductibles and out of pocket amounts are met. If I wait and end up having to have surgery next year anyway, is it worth the wasted time trying more medical stuff that doesn't work? Or only works for a little while until I'm back here again? And why can't I still not lose weight? Or why do I still have a shitload of white blood cells and no red ones?

This is a bad combo -- being sick is expensive and then interferes with earning potential. for example, there is a real possibility that my income is about to decrease, exactly when my med bills are about to increase. I already spent like $3K this year on med crap. I wish I could've put that toward my other wishes and dreams instead. fucking colon.

Monday, September 21, 2009

a different kind of bad day

sometimes, i feel like anger is the only thing keeping me upright.

today is one of those days.

i'm just so aggravated at the way september is drifting away from me, just like the last 4 months. nothing but cancelled plans and false hopes and waiting. oh, and pain and bleeding.

i got my magic double-dose of remicade on the 16th. this was finally supposed to do the trick. i boarded the plane on the 17th, wearing a diaper out of equal parts practicality and paranoia. it ended up being unnecessary, thank goodness. i thought, maybe it worked! i would be able to enjoy my anniversary vacation with DH. nope.

halfway on the way to orlando on the 18th, my guts started churning. i had been taking anaspaz and it did nothing. i sat in the port lucie rest area for a good half hour. it was incredibly awful. i called my doc back in nj and begged for something, anything he could do. the doc on call gave me 40 mg pred to pickup at a walgreens in orlando and warned that it probably wouldn't take effect immediately. he said i could try immodium, but i knew from past experience that probably wouldn't work for me anymore either.

but we soldiered on, and i got dressed and did my makeup for the Disney Halloween night thinger we had tickets for and I had been looking forward to since my hospital stay in May. we decided to get dinner near our hotel instead of in the park in order to give my guts extra time to settle down. during the meal, i realized i would never be settled down in time. i enjoyed my crab shack munchies and surrendered to UC. You win this time, you bastard.

back in the room, i ended up passing out asleep before 10 pm. the next day we did a little walking around at this safari thing, and i got completely exhausted. good thing we had skipped disney. i spent almost the entire vacation sleeping.

i overslept sunday and missed the beach. we got back on the plane, no diaper this time, and had an uneventful drive home.

today was back at work, and i don't even feel like i went on vacation. i feel like i was just asleep on a car, then on a plane, then on a car, then on a plane. like everything else the last four months, the good times were too fleeting, and the rest of the time was either in pain or asleep.

this whole month has kinda sucked. it started with getting sick from the NIN show and being too tired to move. Then we got that fucking letter from the landlord on the friday of labor day weekend that exterminators were coming that week! they had been in my house and handled my bed linens and didn't even leave a fucking note. we came in the house and wondered who tore up our bed. then we found the letter. i had to cancel plans (working on the game for the 12th) and clean for 3 fucking days. don't forget, this whole time, my UC was crazy flaring, because i'm waiting for my magical remicade on the 16th. nobody can do shit to make me feel better. all i do is go get poked and prodded like a good little patient. a short week, then out to PA, where I still feel absolutely horrible, to go set up and run this damn game in the rain. i did the scoring in the ladies room. immodium stopped working permanently. meanwhile, the husband and the cats were holed up in a hotel waiting for the exterminators to finish my building. then they told us they were coming back! i still couldn't freaking unpack. all my clothes, everything, is packed up in boxes and stacked. now i have to pack for FL and can't find a fucking thing. I have an accident at work on monday and ruin the only pants i didn't pack. i can barely move on tuesday. i drag myself to remicade on wednesday, forget to premedicate because everything is packed, but everything goes well. except that afterward, i'm a zombie, and i pass out at home and never make it to work. i sat down at noon and woke up at 3:30. i check my email from home and realized i fucked up an important project by being sick all week. i scramble to get at least something ready, but it's not good enough. the customer is pissed, the rep is pissed, and she scolds me on email, over the phone, and writes to my manager and the director of sales. not my best day. we get home last night to another letter from the landlord, saying that they heard we had "unclean" living conditions and were going to inspect our apartment on the 21st. fuck you, landlord. i wish i could give you my toxic flu and see how clean you keep your fucking house.

if it were any one thing, i could probably deal with it, but it's too much. also, my anemia has gotten worse and i have to double up on my iron supplements and do another round of procrit. i guess the silver lining is that if this past weekend means i failed on remicade, then i'm done with those 3 hour infusions. hopefully, i can go on humira, and just stick myself every other week. good timing too - i'm out of days off for the year. i don't even have half a sick day to use to go to infusion without getting docked.

life has a strange sense of humor - guess i'm lucky this failed. if it had worked, I'd be stuck getting a few days pay taken out of my check at the end of the year. awesome.

so is the pred helping? i guess. the only real difference is that the funky orange slime has been replaced by horrendously foul black/green slime. am i still bleeding? fucked if i know.

Tuesday, September 15, 2009

Invisible Illness Week

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: ulcerative colitis, an inflammatory bowel disease (ibd)

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: taking life slower, carving out time to rest, and being less adventurous with food. also, this latest flare has had many extra-intestinal symptoms, like anemia, which made me more tired than i ever thought possible. and my drugs suppress my immune system, which makes me a bit germaphobic at times. People are just gross in public.

5. Most people assume: that I'm fine or that i'm lazy

6. The hardest part about mornings are: getting out of bed, dealing with active symptoms, having to go back home and change after finally leaving the house.

7. My favorite medical TV show is: House or Scrubs

8. A gadget I couldn’t live without is: my pill keychain that holds my anaspaz

9. The hardest part about nights are: waking up repeatedly in the middle of the night then not being able to fall back alseep

10. Each day I take 21 pills and vitamins. I also get 3 hr iv infusions every 6 weeks, and self-inject once a week. I'm just happy I don't have any more rectal meds (def one of the worst aspects of UC, its location)

11. Regarding alternative treatments I: tried many diets, would like to try yoga, but I don't have the energy or time. I have to avoid adding responsibilities to my schedule -- they just add to my anxiety

12. If I had to choose between an invisible illness or visible I would choose: visable - less guilt, shame, and running to the bathroom

13. Regarding working and career: I used to be super ambitious, now I'll probably never see a promotion, and feel lucky i have a very understanding boss. Though those were really uncomfortable conversations to have to explain my disease and why I need special accomodation.

14. People would be surprised to know: even with my nutritional deficiencies, constant vomiting and diarrhea, I still cannot lose weight, lol

15. The hardest thing to accept about my new reality has been: needing to stay away from crowds and fun festival type activities. I always need to know where the closest bathroom is. and my drugs knocked out my immune system, so I get sick very easily. Colds that a normal person would shake off knock me out for weeks. I feel like i aged 30 years in 3 months. oh, and all the super-invasive tests involved. i'd rather get poked with needles every day than get another flex sig.

16. Something I never thought I could do with my illness that I did was: nothing yet -- i went from being a mild case to pretty severe only over the last few months. I just want to stop this flare, then have a party.

17. The commercials about my illness: there aren't any. no one wants to talk about number 2 issues :)

18. Something I really miss doing since I was diagnosed is: going out dancing. eating thai food. eating sushi. being able to leave the house as planned.

19. It was really hard to have to give up: spicy and interesting food, drinking booze, staying out late. feeling confident i wouldn't embarrass myself in public

20. A new hobby I have taken up since my diagnosis is: restarted knitting

21. If I could have one day of feeling normal again I would: play a great day of paintball, eat curry, go out drinking and dancing until the sun came up.

22. My illness has taught me: to slow down, have a better sense of humor about things, appreciate the small things, ignore the assholes.

23. Want to know a secret? One thing people say that gets under my skin is: are you sure you should do that?

24. But I love it when people: laugh with me instead of at me

25. My favorite motto, scripture, quote that gets me through tough times is: pain is inevitable, misery is optional. no rain, no rainbow.

26. When someone is diagnosed I’d like to tell them: work with your doc as a team, watch out for bad advice on the internet, it's not your fault, diet is only part of the answer, don't be afraid to try remicade/biologics, only you know when/if surgery is right for you.

27. Something that has surprised me about living with an illness is: how helpful some people can be. i always have trouble asking for help, and while some folks are jerks, most are really understanding. everything is easier when you have a good story and can laugh about it later.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me slurpees!

29. I’m involved with Invisible Illness Week because: I have one.

30. The fact that you read this list makes me feel: warm and fuzzy, and wondering how many others out there might be helped by frank discussion of hidden illnesses.