Great day for freedom

I mean, great day for free food! My company has vendors come in to prmote their stuff. Whilst i am a lowly webmonkey and not allowed to attend said vendor events, we do get to pick over the leftovers. Not only was there a lunch and a breakfast, the meeting before mine left their lunch meeting leftovers for us. I've eaten a bushel of Red seedless grapes today

I'm actually still stuck at work because my ibd is being bad. I've switched my 30 mg pred to the am- so far all it does is make me emotional and give me hot flashes in the afternoon. My 6mp was increased to 150 mg on Monday, which sounds like a lot until I remember I'm obeeeeeeeese. Dosage is usually mg/kg and I've added a few kg recently. But that is honestly not something I'm remotely dealing with. I try to eat a balanced diet, avoiding triggers and hard todigest foods, but I can't deal with being hungry, so I eat often. And I don't exercise. I want to, but it's hard to go for a walk when you don't know when you're gonna have to go. There's treadmills at work, but exhausted. Meh, try again next week.

I think I should start taking the 6mp on a empty stomach instead of w dinner. Maybe it'll be more effective and make me nauseas so I won't want to eat all the time!

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tantrum

i'm so pissed. i had to go back to 30 mg of pred. i was so ill this morning, just like the bad old pre-6mp days. is this shit even working?? fuckity fuck!

i was really hoping to be off the roids by my b-day, then start loosing this disgusting weight i gained. i'm a freaking whale. i got nasty stretch marks everywhere and just look totally gross. what i wouldn't do to be back at 170 lbs. gee, i used to think i was fat back then, lol

i'm cutting all my hair off on saturday. i'm bald on one side from my stupid ocd hair pulling. the pulling is bad, but now the hair isn't growing back the way it used to. i'm just so frustrated. i make plans and start to feel like a normal person, then this monster inside starts chewing on my guts and sending me back to square one. i'm so freakin tired. i slept all day sunday. everyday i wake up and just want to go back to sleep.

Remission party postponed

Last visit to the gi doc, he was happy I was becoming a "boring" patient. Steroid taper was going smoothly, 6mp was taking hold bloodwork looked good. I started looking forward to moving from fake remission to real remission.

Anyway, those plans are now on hold. In a cruel April fools prank, my symptoms are back, even afte increasing back the pred and increasing 6mp. I've been really bummed about it. The most annoying bit are the return of the mouth sores. My tongue is all owwie and all I want to do is drink crushed ice. Though I finally ate at Rita's yesterday and it was awesome. So are cold stone creamery smoothies.... Mmm bananarific.

In other health news, those extreme headaches sent me back to the Ear/nose/throat doc because I thought they were sinus. But after sticking various tubes all up in my face, he determined my sinuses were fine. And sent me to a neuro. My neuro is awesome, and he sent me for an MRI. I went yesterday and learned that I am claustrophobic. I never felt a fear response like that before. I was pretty calm, got in the machine, then all of a sudden my body caught fire and I had to get out. We actually just watched a character on Lost get an MRI, so I felt prepared for the cage on my head and stuff, but expected a panic button. I wasn't sure the tech could hear me so I kicked my feet to get her attention and shouted "please get me out" until I was out. I felt pretty embarassed, but figured I could calm myself down and try again. Now that I knew how dark it would be and that she could hear me and I could hear her, I figured I'd be ok. Nope, I calmly went in then felt all firey again immediately. It wasn't something I could cowgirl up and deal with for 20 minutes. So they got me out again. I felt like a total failure and a total weenie. Apparently I can deal with tunes going in me, but not me going in a tube.

Holy crap, just writing about it is making me all twitchy.

Anyway, luckily they had an open MRI and I was able to deal with that (though it was still freaky). Hopefully it's good enough for the neuro - office was closed Saturday and I didn't think it was severely important enough to page him. If it's not and he needs regular MRI, I'd have to find a place to knock me out and stuff, because I don't think Valium and hugging a Teddy bear would be enough, and I'm pretty sure they don't allow flashlights in the MRI tube.



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boredom

it's been a weird 3 months. when I first saw dr I., i was convinced we'd be doing surgery by now. but the 6mp and colazal seem to be working, and I'm almost off the steroids. of course, this is great! but by not being so dramatically, obviously ill, it makes the trip into nyc once a month to see him seem kinda silly. it's going to take me 2 hours each way to get there, sometimes he runs late and i hang out in the waiting room for an hour or so, and the rest of my day is shot because the appointment is always in the middle of the day (not like i'd be able to get back to central NJ to work anyway). The last couple of trips were in december, january, and february, so maybe March will be warm enough to make a fun day out of being in nyc. but i'm so incredibly tired, all i want to do is sleep, or sit still and knit. i love nyc, but it's not a good place to be when you are too tired to walk anywhere. plus, mt sinai is way the hell uptown, so by the time i get myself back downtown, i'm ready to go to penn and jump on a train.

meh, i'm spoiled because my original doc is like 15 minutes from my house. if we had ignored the low tmpt enzymes and just tried 6mp last year instead of remicade, last year might not have sucked so hard, and I wouldn't have been on steroids for the last 6 months. and i wouldn't feel like a pufferfish. hindsight is 20/20 i spose. few more weeks, the steroids will be over, and my excuse for not being a good diabetic will be gone. back to blood glucose monitoring, watching carbs, and exercising. the snow is melting, the sun is out, and it's time for me to shed all this blubber. i don't mind having a giant behind, i just want to get it off my face.

bad hair days

so on the whole it's been nice and quiet, just a couple bad hours here and there, especially in the morning (which is really inconvenient, but whatever). i'm slowly tapering off steroids -- i'm at 15 now and get to drop to 12.5 on Friday. those 2.5s are so tiny!

on top of all my other problems with vanity, my hair-pulling is catching up with me. i've been really anxious and pulling alot, but the hair is not growing back as fast as it used to. ergo, half my head is almost totally bald. even where i'm not pulling, the hair is thinning. i have blank spots scattered all over. i think it's the pred, or the malnutrition, or a combo of everything, but part of me is just thinking i should shave my head. maybe it'll look better to all come back in together and be one length, one thickness. maybe it'll get me to stop pulling if i have no hair. my sis had a cute idea of just cutting it short, but i'm afraid there's no in-between here -- short hair wouldn't leave me enough to cover the bald spots the way long hair does.

so i'm thinking of shaving it all and just wearing cute hats until it grows back. but i should probably knit up the cute hats first before i grab the clippers.

Pls crack open my skull to let the pain out

Yesterday was wicked headache from hell number 2. I woke up with it and it got worse all say no matter what I did. Drank caffeine, hubs put me on high flow oxygen for 20 minutes, o took a bazillion Tylenol. Finally gave in and went to er. Brain scan showed nothing serious, but signs of sinusitis in all my sinuses. Weird, because I haven't felt sinus symptoms at all, just this bronchitis and sore throat that's been kicking my ass all week. Doc thought it could be from streiod taper, sinusitis, or possibly migraines and suggested follow with primary care phys to figure out whether to see a neuro or ent. He gave me extra pred and a shot of dilaudid for the pain. Dear, sweet, wonderful dilaudid! Sure, it cost me $100 and I missed most of the superbowl (all of the 4th qtr because walgreens sucks) but the pain relief was so worth it.
Coincidentally at GI doc today and was gonna ask him about these headaches anyway. Last month and yesterdays headaches were the worst of my life.


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puffy

i feel like the stay-puft marshmallow girl. i am so sick of my puffy steroid face. i'm so ugly and disgusting. i've always been chubby, but at least before it was all in my butt. now it's all on my face. it's so gross. i hate it so much. this must be some kind of karmic revenge for all my not-nice thoughts about other big girls, like i felt better than them because i was under 200 lbs and had a pretty face. now i'm as big as all the girls i'd look down on. and i look like a freaking puffer fish.