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.