so i dragged myself to the office today, but as soon as I pulled into the parking lot, i realized i should have stayed home. i'm soooo nauseous. i just took a zofran, luckily i still have some floating around. i wonder if i should just throw up and get it over with, but i hate throwing up at work. and if i do throw up at work, i should probably go home.
so yeah, flex sig showed inflammation - either the remi is not working, or i need a stronger dose, or my body recognized the mouse proteins already and is attacking the remicade. fun stuff. so i go wednesday for a double-dose -- 10 mg/kg. wednesday can't get here fast enough.
not sure what happens if remicade doesn't work. looks like off-label humira or cimzia. not approved for uc yet, but are for crohns. tnf alpha inhibitors that are not chimeric like remi, they are fully human. plus, instead of 3 hr iv infusions, they can be administered by injection. i'm the self injection master!
though i am a bit rusty. it's been a while since i was doing the allergy shots, and part of my visit tuesday was a script for Procrit. This stuff must be liquid jesus, because it is so freaking expensive. $2300 retail for 4 doses, shit. anyway, i self-injected 1 ml of the stuff to promote red blood cell production since i'm anemic now. it's a band-aid solution, but if it helps me stay awake and actually live my life, awesome. using coffee keeps me awake, but keeps me locked in the bathroom. not a good way to live.
so i'm working from home for the second day this week. i went in yesterday, but i was so tired and cold all day, i was sooo angry. this morning i woke up at 5 with crazy crampy toilet party, plus the boiler in my apt building turned off, so there was no hot water. i could not face leaving the house. plus my hip is all hurty again, which is really pissing me off. must be all the running and squatting... i should wear one of those pedometer things. i bet i've run a marathon between my bed and my bathroom in the last 3 months. being 30 sucks so far.
maybe i'll be one of those people that spontaneously goes back into remission. here's hoping :thumbsup:
so i had remicade on thursday and it seemed to do nothing. i'm hiding in my house today after an attack interrupted my script meeting and made it impossible for me to work. i have a flex sig on tuesday to figure out if there's been any improvement. i'm going to ask to try again with an increased dose, hopefully in 4 weeks or sooner instead of waiting 8 weeks. i'd like to be in sorta-remission by september, like how i felt after my first dose. if that means upping remi and adding entocort, let's do it.
a fun activity for me lately has been figuring out what i would define as remission. 1. no gurgling monster sounds and feelings in my guts 2. no rectal meds 3. no accidents while sneezing 4. no urgent running to the bathroom 5. no waking up in the middle of the night to run to the bathroom 6. no anemia, no fatigue, no more zombiedays 7. being able to eat veggies, even if they haven't been cooked to death 8. being able to eat slightly spicy things without praying for death 9. being able to eat seeds, fruit/veg with skins, whole-grain foods 10. being able to not have my life revolve around what goes in and what comes out.
and i want all of this while still having my colon. ostomy is not an option, not yet, please.
the only difference between today's symptoms and may's symptoms is that most of the cramping and pain is gone, but the, uh, output is the same. where is all this blood coming from anyway? this can't be right. i bet tomorrow when they hook me up to the iv they'll say, "your bloodwork looks normal; hang in there, tiger!" as usual.
and the worst part (because I'm totally vain) is that i'm back up to 213. 213! so freaking unfair. i feel awful, i'm barfing, i'm in the bathroom all night and most of the day, and somehow i'm gaining weight. fuck you, body. why are you so fucking tired all the time? all we do is sleep! stop waking up in the middle of the night. stop being tired. i had 3 cups of coffee ths morning, and i'm still tired. instead of stabbing pains of 7 and 8, i just have a constant ache. i feel heavy. it's hard to breathe, like i'm wrapped in a blanket of bricks. i'm constantly walking on sand, or trying to walk through neck-deep water. sometimes i just want to drop down and drown.
after the first remicade dose, i felt great. all the burbling and gurgling was gone. it's still mostly gone, but almost everything else is back. i get to worry about humiliating myself on a daily basis again. I run less frequently, but when it comes, I still need to RUN! that fleeting freedom from the first dose is gone.
goddamn i want some freaking twizzlers. all i want is sugar. all i do is prop myself up with carbs, because everything else sounds too nasty to eat. that's probably why i'm fattening up again. i'm too tired to plan healthy food to eat, so i'm stuck with whatever is laying around. luckily, i never have any cash, otherwise i'd be at the vending machine right now, eating twizzlers. i don't really have much left anyway. can't eat raw veggies. can't eat dairy. can't eat nuts/soybeans. can't eat spicy. can't eat lots of fiber. i want a feeding tube so I don't have to think anymore.
Tix go on sale tomorrow, hopefully I'll get some... and I hope they play Happiness in Slavery. It just came up on shuffle, i forget how much i like it. i'd go to every show if i could, but even if i miss out, that MD show blew my mind. as I said to chickie then, i could totally die happy that day.
still feeling gross, hopefully 3rd times the charm with Remicade -- next infusion is next thursday morning. I just need to keep it together for this weekend, giant paintball fest '09. luckily, we got a hotel, so it's less packing and roughing it, yet i'm so tired, I'll probably leave my ego in the gearbag and run pistol all weekend. too bad, i love to spray paint in such a target-rich environment. it's like playing House of the Dead with extra extra extra mutants :)
wooo, 337! whoops, no wonder i feel like crap. my a1c is gonna be totally borked this quarter. fricking frick!
plus i'm still bleeding, what the hell? come on, guts, what do you want from me? i'm staying away from all those nice veggies you told me you didn't like, plus all the other food you don't seem to agree with, leaving me nothing but stuff that jacks up my blood glucose. The remicade is keeping y'all from getting beat up by all that mean ol' TNF... now heal dammit!!
i'm soooo tired, but there's no cramping or other gnarly symptoms, so i'm thankful for that. i just wish i weren't so tired. i've been going to be at like, 9 pm. i can't get anything done, and my projects are just piling up. i've been doing really good by avoiding caffeine, but i need something else to wake me up. sugar works, but i gotta get myself back on track. i was looking at a picture of myself from may 7th, and i'm all fatty and bloaty again from bad blood sugar control. i have to re-lose the same damn ten pounds i lost in april, on top of the other poundage i need to lose. sigh....
i just have no willpower either. and the idea of exercising makes me laugh. i get tired so easily now. like this morning, i had to take two jumbo bags of laundry to my truck, and i was zonked afterwards. i feel like a zombie. i'm tapering off the steroids so i can't blame them, and i'm only slightly anemic and have been taking iron... is there any other reason for this fatigue?? probably because i'm eating like garbage and not exercising... grrrr. it always comes back to that, doesn't it? this week, back to the meter and back to eating to improve my score, and forcing myself to walk 15 min a day. then a nap :)
listen up, FDA... you'll get my extra strength tylenol when you pry it out of my cold, dead hands!!! you limit the per-pill strength, i'll just take more!!!! dumbasses. and here's a hint -- how about you recommend hydrocodone be produced without APAP and people won't blow out their livers. chronic pain patients NEED effective drugs; abusers will abuse ANYTHING! banning drugs does not work.
UPDATE: Here is a much more eloquent summary of my opinion on the matter, by a doctor no less! I do wish we lived in a world without pain, but I'll take oxy-zombies over watching my loved ones writhe in pain until they die.
i'm pretty bummed out today. the remicade is making a huge improvement, but i'm feeling worse than i did after my 1st infusion. of course, i'm blaming myself. but i think maybe i just need more time to heal. i mean, my immune system was attacking my guts for years while i threw useless drugs at it. maybe it'll take a few months to fix the damage. but i get impatient.
i wish ulcerative colitis had a better name. IBD isn't really much of an improvement. why didn't they name it after the doc, like Crohn's. I usually just tell people i have a disease like Crohns, and they can understand. I don't like to say things like "bowel" and "colitis" to like, my boss. it's like unnecessary embarrassment on top of the actual horrible disease.
after feeling uncomfortable all night, i gave up on sleeping and got out of bed at 3ish am. in between running to the bathroom, i updated the wireless network settings on the dell that i had installed gOS on and booted up the old clamshell ibook to see if it could function as the new kitchen laptop (the big ass acer has like no battery life and I don't want to get splatter on it anyway). the airport couldn't figure out how to connect to my wep secure wireless network; then again, it was running version 1.2. I upgraded to the highest version for os9, v.2, rebooted and viola! everything works. there was a failed attempt to download the software on a flash drive on the acer then load it into the mac, but of course, win couldn't read the flash drive after i formatted it on the mac. derrrr. luckily, i have a random ethernet cable in here for when the wireless network is being naughty. not bad for being up at 5 am.
now i'm eating rice krispies with chocolate almond milk... it's pretty good. like cocoa pebbles for folks who can't deal with the supersweet original. i gotta go back to gentle foods... i keep forgetting then i do stuff like eat pork lo mein and pad thai. dummy! i'm generally pretty smart, but i'm so dumb when it comes to food. like, i totally know better, and i have baaaad consequences, but someone says "want chinese food?" and i'm like, omg totally! i need to cut that out :)
5 granny smith apples - peeled, cored, and sliced 1/2 cup sugar 2 tablespoons almond flour 1 teaspoon ground cinnamon 1/2 tsp allspice
TOPPING: 3/4 cup biscuit baking mix 2 tbsp brown sugar 1 tablespoon sugar 1/3 cup milk 1/2 teaspoon ground cinnamon (if using the amish buckwheat mix, use 1/2 cup mix and 1/2 cup milk)
1. Place apples in a 1-1/2-qt. microwave-safe dish. Combine the sugar, flour and cinnamon; sprinkle over apples and toss to coat. Cover and microwave on high for 3-4 minutes or until apples are tender. 2. Meanwhile, in a bowl, combine the biscuit mix, 2 tablespoons sugar and milk. Drop by tablespoonfuls over hot apple mixture. Combine cinnamon and remaining sugar; sprinkle over topping. Microwave, uncovered, for 4-6 minutes or until a toothpick comes out clean. Serve warm.
i used to think that people who went around happy all the time were either stupid, on drugs, or full of shit and just really good at hiding their negative feelings. and for the most part, that's true. but i'm realizing to that sometimes the most transgressive thing you can do in this world is be happy. life throws crap at you, you're at the lowest place on earth, you look up and go, "you know what, fuck you, i'm gonna be happy anyway!" and you are. and you do what makes you happy, and ignore the crap. it's difficult, and probably impossible to do all the time, but sometimes you just shake it off and go about your business.
there are people out there that love to complain about bullshit and bring you down with them. being sick has given me better perspective. and i'm not wasting my energy soothing the feathers of the easily-ruffled. you got a legit gripe, sure let's bitch about it. but some people are just whiners. and it makes me wonder how they got through life this far without something more important happening to them to give them some perspective. lucky bitches.
i'm not talking about the kind of happy that comes from stupidity and ignorance. there is plenty of that out there too. innocent happy is a different animal, but once it's gone, it's gone. i don't begrudge the young and innocent and naive. good for them. i mean the stubbornly stupid, the ones that should know better, and they're not being happy in spite of it all, they honestly don't know/ don't care. and these are also the ones that bitch about bullshit. fuck em.
i mean the ones that go through hell, and come out the other side, and still need to make trips into hell once in a while. we find a way to be happy anyway. a defiant happy. a "yes, these are silly unicorn and rainbows but i'm going to take the time to recapture some of that innocent happy I used to feel when i was five and was all about unicorns and rainbows." it's too easy to be miserable. it's strong to be silly and happy in spite of it all. there's a quote floating around out there that pain is inevitable, misery is optional. and i'm trying to keep that in mind. i'm going to laugh at my pain, laugh at my setbacks, laugh at the shadows and fears. Come get me. you can make me writhe in pain, you can trap me in the house for days on end, you can tear away my plans and hopes, but you can't make me stop laughing. no matter what you do to me, i'm going to be happy anyway.
kick out the gloom kick out the blues tear out the pages with all the bad news