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?