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.


- Posted using BlogPress from my iPod touch

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.

a week of good days comes to an end

i realized this morning i have a number of missed entries. i've been extremely busy, but i've also been feeling pretty good. i want to write more when i'm pissy apparently. i was in a nasty mean mood yesterday, but was awake and not in pain. i just cussed alot. but today, i'm exhausted and everything hurts, so i'm whiny. i'm still taking 30 pred, but was going to switch to 25 today. but i've just been having an bad uc day already. so maybe i won't

knock on wood

oh wow, this is a good day :) sure, i'm a little tired, a little blue, and have a little headache, but yeah, i'd count this as a good day. and i've been busy at work today. let's hope this keeps up :) i made the right choice holding at 30 this week. maybe next week i can reduce.

headache from hell, day 2

ever have a headache so bad, you take a percoset, and the pain just laughs at you and gets worse? yeah, that's the headache i had yesterday. woke up with it, tried to go to work anyway, eventually gave up and went home. couldn't sleep it off because the pain was so bad. took a percoset and it was an effective as a tic tac. now i have a headache-hangover -- i'm afraid of it coming back full-force, but so far tylenol is keeping it at bay. i'm trying to pin down what may have triggered it, but not coming up with anything. the weirdest thing i ate was 7/11 chicken wings. maybe that was it? i would've thought the prednisone taper, if i had tapered this week, but i'm holding steady at 30 due to having 3 bad days last week. and today is sort of a bad day. i guess. i have to redefine "bad day" -- because by some definitions, all my days are bad days. then again, any day you wake up is a good day :) any day i can leave the house is a good day. any day i don't wear depends is a good day.

anyway, yes, i had 3 bad tummy days last week. the day after my doc visit (just like taking a car to the shop -- starts making the noise again AFTER the mechanic says they found nothing wrong), thursday, and part of saturday and sunday. and today kinda. but today was bad in a different way. those were D days, today was a B day. I don't like B days. B days make me think i need to reup on steroids, and i hate those things. i'm so disgusting. i'm a big bloated mess. i feel like a freaking whale, but i really hate hate hate dieting. can't they invent something that makes you waste away the way prednisone makes you bloat up? it seems so unfair. i kinda wish i could go back to last may, with all the bleeding and sickness at least i was skinnier. back then before i was all depleted and useless, and just had UC. why do i feel sicker after all this medical intervention?

Compassionate use bill passes in NJ!

woo hoo! Finally, we can stop prosecuting sick people for smoking weed. There was just a huge trial in my hometown for some guy with MS. Waste of taxpayer dollars to put this guy in jail. The medical establishment might still be debating the merits of marijuana, but it can't be any more harmful than the drugs they already sell us. Ask anyone that's watched the end stages of cancer, as their loved one becomes an oxy-zombie. Maybe the end could've been a little easier for my dad if we could've gotten his appetite back, or if he could've taken the edge of with a little MJ instead of getting totally knocked out by oxy. He would've died either way, but probably suffered less.... and if medical science can't prevent death, at least we can use it to alleviate suffering.

http://www.nj.com/news/index.ssf/2010/01/medical_marijuana_question_answers.html

What diseases will make a patient eligible to get medical marijuana?

Cancer, glaucoma, seizure disorders (including epilepsy), Lou Gehrig’s disease, multiple sclerosis, muscular dystrophy, severe muscle spasms, HIV/AIDS, inflammatory bowel disease (including Crohn’s disease), any terminal illness if a doctor has determined the patient will die within a year, or any other medical condition or treatment that is approved by the state health department.