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.