tired

i'm so tired, i just want to cry. my muscles ache. i went home after work last night and passed out until this morning. and my husband seemed so annoyed at me and made me feel guilty for sleeping so much. great, i'm disappointed in myself and apparently aggravating him too. great way to start the day.

week 1 review

so far so good. staying away from dangerous temptations like thai food, indian food, and chipotle. sometimes, i think i just want guac, but I don't think I can go there and walk out without a burrito... mmmm barbacoa goodness, i miss you!

still zombied out most mornings. totally brain foggy and everything aches. but i'm so much better than i was before. had a bunch of caffeine and felt like myself again yesterday, but now today my tummy is unhappy. i'll save caffeine for special occasions :)

but i'm at work, with my heating pad on my lap, happily enjoying being rather normal. i'm pretty proud of myself for maintaining full time employment during this whole travail. the last solid week off I've had was my week in the hospital in May 2009. nice to see my bull-headed stubbornness as an asset instead of a flaw for once. but i am really looking forward to taking an actual vacation next year :)

remission

yup. off steroids. off enemas. off 5-asa. just 6mp now.

i slept allllll day so i decided today would be day 1. yesterday i had a huge headache that started over my right eye, so i took tylenol, then percocet when that didn't work. woke up later with a headache all around my head like a crown of thorns. passed back out. finally woke up at 4:30 feeling ok. flopped around the house having bad memories and sad thoughts. then picked up a new knitting project that is going along ok. it's gonna get felted, so it's a great project to make mistakes and say eff it and leave the mistakes in place. i needed a mindless project for today.

so i'm gonna keep taking it easy, get back into being a good diabetic and getting my blood sugars back in line. gonna enjoy not taking pred anymore. i already feel less crazy and less bloated. i dropped 20 lbs. 15 to go to get under 200, then 10 more to get back to pre-pred weight, then 20 after that to get to about as close to my goal weight as i think i'll be able to get.

gonna keep not overdoing the caffeine and booze. no need to overwork my liver and pancreas. i think i had food poisoning or something last weekend. i barfed for 3 days straight. everything i ate came right back up, i called it trampoline tummy. my stomach and i finally agreed on eating some watermelon, but when i went to lay down, the trampoline kicked in and i projectile vomited all over our hotel room bathroom. so much for a romantic weekend away. maybe next weekend i'll make up for it. it's my 5 year anniversary, and if all goes well, it'll be my 1 week remission anniversary too.

yay me! :)

blarg

i like the not eating and losing weight aspect of this thing. i've always struggled with eating too much. i've never experienced the opposite. is this how skinny people normally feel? no wonder they can't put it away like i can. it's pretty bitchin... i'm down to 215, though most of that is still pred weight and should have been easy to lose. 25 to go until i'm back at pre-steroid weight, then another 20 to get to 2005 hottie weight. I don't think I can get much under 170 without involving amputations or giving up butter. and life without butter is not living.

the annoying thing though is i am such a picky eater now. and i'm getting afraid to eat yummy things. last night i ordered indian food from a place I ate at before without problems. even their mild food is spicy to me now. i got this awesome chicken gassi -- like a coconut/tamarind curry sauce... omg so good! and after a few bites was like, i probably shouldn't eat this anymore. so i moved on to the goat biryani. also incredibly good! but again, too spicy for my paranoia. the lentils and tandoori chicken that hubs got looked good, but were spicier than what i had already eaten (according to his palate, which tolerates much hotter stuff than mine!). so i didn't want to eat those either. so i had some naan and decided i wasn't hungry anymore.

and was sick all night again anyway.

sigh. so today, i had a muffin around noon, because i was kinda getting hungry. now it's 5, and i have heartburn and nausea. how can i get nauseous when there should be the perfect amount of foodstuff in me?! not too much, not too little, a fricking blueberry muffin causes heartburn? gah.

i have no idea what to eat tonight. i'll probably just get soup somewhere. i've been day dreaming about making a big ol pot of my chicken/veggie soup, even though it is 90 bazillion degrees outside. my mom put the idea in my head, she loves my soup. i would love like a vacation where all i do is sleep in my house and make home-cooked meals. i love cooking, but just don't have enough energy to work and cook. can i take maternity leave and baby myself for a few weeks?

bunny hill

back on a downward trend. i think i had a few weeks where I felt like a normal human at least part of the day, but i'm heading back down again. constant nausea, stomach pain, gi upset, sickness. waking up in the middle of the night again. hot, feverish, sweaty. pain everywhere. silver lining? total loss of appetite. makes it easier to lose the pred weight. down to 2 mg pred. down to 215 lbs. still fat, but less so. i'm ok with this -- as long as i'm not bleeding and as long as i'm losing weight. i got plenty to burn. chronies as a rule seem to be rather skinny and don't have alot of padding, so malnutrition is a big issue. i got lots of blubber. the only things i can eat are eggs, toast, and soup. and crab, oddly enough. everything else tries to escape my body as quickly as possible.

less depressed this week. less suicidal ideation. less wanting to go to the vet to put myself to sleep (where do you keep that pink stuff you give mastiffs with terminal cancer?). more diarrhea. i guess this is better? still sticking myself with needles twice a day. now have to start sticking myself with cortenema at night. but i still have my guts, which is definitely better.

drug fatigue

ever just want to take fewer drugs just because you're sick of managing so many drugs? I just kinda stopped taking colazal last month, because swallowing 9 pills a day is a pain in the ass.

i was really bad about doing my morning insulin injections, but i put my big girl pants on and just started doing them gain. it's weird, it's 10 units instead of 50, but my skin reacts so much more to it. probably coincidence. i'm running out of room to stick myself. twice a day sucks ass.

i'm happy i'm down to 5 pred, because it means one less drug to keep track of, along with just wanting to get off demon prednisone for all the nice side effects.

i'm stuck with nuvaring because of the whole don't wanna get preggers thing. plus i love saying "no thanks" to the fake cycle i get on my off week. but that one's easy -- i really only deal with it once a month.

i'd like to get off lexapro, in part because i feel it's not really working. i started taking it years ago to treat my "ibs" -- such bullshit. i wonder if i'd be the same or worse without it.

6mp and me will probably be bestest friends forever until it stops working. 3 pills at night aint so bad.

claritin and singulair are also my bffs, because without them i want to peel off my skin with a paring knife and my lungs close up like they are filled with sand.

i take metformin twice a day, but once i get off pred i should be back to once a day, and can stop taking the insulin too. and i'll have to diet and exercise because i won't have the excuse of the prednisone in my way. i want my good a1c back dammit :)

and walgreens doesn't seem to give you any way to delete old/expired prescriptions, so i have like 65 on my records. only 9 or so are active because I keep hiding the ones I don't want to take anymore. that includes test strips and needles for the insulin too. i finally polished off my first box of 100 needles. if i'm a good girl, the next 100 should go even faster, if i remember to actually do my shots.

circles

i can't stay awake without caffeine

caffeine awakens the beast in my guts

sources of caffeine make my stomach feel sick - such as the bubbles in diet coke and the tannins in iced tea. I don't even mess with coffee anymore (the beast LOVES coffee).

i drank copious amounts of iced tea on my customer visit last thursday.

was severely nauseous all night thursday

and all day friday

and all night friday

and all day saturday

gave up and threw up on saturday

felt better for a bit, then I started the D saturday night

and all day sunday

and all night sunday

and stayed away from caffeine

and was a zombie this morning

was so tired it hurt

so i had a diet coke for lunch

i can't live without caffeine

good news!

dare i say it? the persistent nausea has decided to leave! hooray! i mean, i still have my seabands in case it comes back, but i realized yesterday that i hadn't worn them for a few days. awesome!

i'm down to 12.5 mg pred and feeling pretty good about that. i'm still fatigued and still go from 0 to bitch in 6.5 seconds, but other than that, things are looking up. i can deal with the abdominal pain and weird joint pains I've been having. there's just something about nausea that makes it harder to deal with than pain. probably because when you're in pain, you're not in danger of spewing pain all around you, but nausea definitely involves the threat of spewing.

while i'm being gross, i stepped in cat puke again last night. little cat barfed, big cat ate it. cats are so disgusting.

blerg

today was just rotten. it started at midnight, when i got home, and could not sleep.

i rolled around for 5-7 hours, and eventually passed out in time to hear my alarm go off.

then i stepped in cat puke

then i decided to test my fingertip with my lancet instead of my arm, but I didn't retract the thinger from level 4 (deepest poke) to level 1 (fingertip-appropriate poke). mondayfriday that hurt

then i found out that my bearded dragon was dead :(

then i got a txt from hubs, who slipped and fell and broke his arm, in Texas :( :(

and i was already late for work, so I wrapped up my dearly beloved beardie, put her in the fridge.

got to the office, made a dr appointment to fix the husband and found a pet cemetary that charged reasonable rates for a reptile cremation.

later, i'll email this awesome pottery artist and ask if she can make an urn for my Zoey.

then over the weekend i'll have to get her to the pet cemetary. maybe after the long weekend. until then, i'll have to keep her in the freezer i guess.

Man, looks like July isn't going to be any better than June or May. crapadoodledoo

alternatives

so i was taking my 10 night time pills and had a conversation with myself:

hey, isn't it awesome that there is all this modern technology and medicine we can take?

not really, sometimes i feel like i'm just being tortured.

hey now, it's not that bad. 50 years ago, we woulda had surgery by now, or just died.

true, but we're probably going to end up having surgery anyway after three years of being experimented on.

well, isn't that better than dying?

i guess.

* * *

then i went to get more insulin out of the fridge. at least it's easy to use, the needles are tiny, and it doesn't feel like anything when you inject it. procrit burns like a mother and filling the syringe from the vial was such a pain in the ass.

life is scarier than death. but there's nothing i can't handle if i'd just stop whining about it. as long as i'm not being flex-sigged, nothing's really that bad after all

no longer seasick on land!

i was totally skeptical, but i got these seaband wristbands because i was freaking desperate, and they totally work! yeah, they are not the greatest fashion statement, but i've been wearing them all day and haven't wanted to ralph everywhere. a bit hot for wearing outside (90 degrees at 9 am!) but perfect for cubefarm climate.

now if i could just find the pressure point that makes you not fall asleep at your desk. maybe i should wrap one of these around my head and try to find it.

woooo! hit the max!!

this is a new record for me -- I hit the out-of-pocket copay max on prescriptions yesterday. my nuvaring was $4.14 and my steroids were free! woooo free drugs for the rest of the year for me!

good thing too, only $434 left in the FSA for the year. and i'm back to seeing dr awesome almost monthly instead of almost quarterly. had a great visit yesterday, but have to go back in 4 weeks. luckily, he's totally booked solid anyway, so I can't get in until august. sweet! because if i got an appt in july, he woulda made me come back in august anyway. ugh, i wish i could use the FSA to pay for my parking, njtransit ticket, metrocard, and cab fare that it cost me to see this guy. but he's awesome and i'm lucky to be able to see him, so I'm not really complaining that much. just grumbling.

anyway, started the last of the steroid tapers. if i flare after this, it's cuttin time! dr awesome mentioned it would probably be a two-step procedure. hubs wanted more info, but dr awesome said it was a convo for another time. he's really hoping the 6mp took hold and a nice slow taper off the oral steroids, bridging with the topical steroids, will get me on track. i hope so too.

best case is no surgery. i'd prefer a one-step, but two step isn't horrible either. i'll just be happy to be done with this. i wouldn't be surprised if this taper fails and i end up having surgery, and i won't be surprised if we have to do two step. everything with this damn disease is complicated. why should any of this be easy? at least i know i'm in good hands and i feel comfortable saying, "ok doc" rather than worrying if i've done enough medically and gotten enough second opinions.

zofran vs nausea: FIGHT!

omg, nausea is winning the battle today. i think i should go barf. i hate barfing at work. i'm just drinking water, i think i should eat something for lunch, but nothing sounds good.

i started the novolog 70/30 today, 10 units at breakfast. it's neato -- you have to mix it up so the insulin turns white, then inject it with the flex pen. easy peasy. my wakeup bg was 285, and my post breakfast bg was 275. it's now 271. so holding steady. i had one of those dunkin donuts wakeup wraps this morning, egg and cheese. pretty good, less than 20 carbs, but tiny. i wonder if i can just get the egg and cheese

"hi, i'd like 2 wakeup wraps, hold the wraps"

the only other thing i had in the house for breakfast was cereal. and i knew it would blow up my bg numbers. i wanna help the insulin work. maybe if i get my bg back into normal range, i won't feel like throwing up all the time. cereal is good though. i keep buying all the fun organic cereals from kashi and cascadian farm, and eating them with ricemilk. i loooove ricemilk. me and cow milk don't get along. i need bacteria to turn it into cheese before I can enjoy it. but ricemilk, omg, good stuff. almond milk is good too. not a fan of soymilk. but ricemilk is a bit high in sugars so it's a treat for me. mmmm, wish i had some cereal here. last year, i lived for a month on rice krispies. bad for the diabetes, but good for the uc. that's like my go-to food when i don't feel well. stupid, delicious carbs.

another day, another needle

so the long-acting basal insulin isn't enough, now i get another flexpen for fast-acting insulin with breakfast, woo hoo! gotta say though, injecting insulin is the easiest thing i've had to stick myself with. procrit burns, and is hard to get in the needle because the vial is so tiny. allergy shots are annoying and make you itch. humira pokes and burns a little, and i was always afraid i'd trigger the needle too soon. but these flexpens are awesome. the needle is sooo freaking thin, you practically don't even feel it. i think the only reason i feel anything is that i'm watching myself do it. i bet if hubby did it, i wouldn't even feel it.

i felt like absolute garbage today and went home early. my fingers still feel like they are getting stuck with needles and pounded by hammers. they look gross too. i'm still so freaking nauseous, but i can't take zofran every day. can't wait for my doc visit monday. fake remission is better than active disease, but this pred is killing me. my blood sugars are totally borked, and i am a walking petri dish. i'm going to ask if he thinks i should do another slow steroid taper, or do the iv cyclosporine. i'm a little partial to the slow steroid taper, because i'm afraid if the iv doesn't work, i'm going right to surgery. at least the long and slow method, i'll feel like i gave myself enough time to let everything work. but then again, it's been a long year, and i'm tired. i just don't trust myself to make the right decision in a way, because i feel so stupid all the time. i don't want to do anything rash, and i don't know who to trust. i've been so disappointed by the people i've trusted with important shit. now that i can't trust myself, i don't know what to do anymore.

i really don't want to go back to constant pain and diarrhea. i'm really scared of the after-effects of surgery. even if everything goes well, there is still that period of transition before i'll feel "normal" again. it's so horrible having to deal with this all at work. at least the steroids make me appear normal and keep me out of the ladies room.

but i'm totally ok with sticking myself with needles. i really wish remicade had worked. i'd stick myself with a needle hourly if it meant getting to keep all my bits and pieces operational and not having to poop in a bag.

I wanna refund!

I wish you could go ask for refunds from doctors. It sucks that if I buy a thing at target, and it doesn't work, I can return it... but if i waste my money and time at a doc, i just have to eat it.

First, i'd ask for a refund from my old old GI, for making me come in every 8 weeks and just throwing more asacol at me. The asacol was useless too, but those drug copays add up to $600 for the year, so that's pretty extreme. so let's go halfsies -- 5 useless office visits and half a year of useless drugs - gimme $400

Second, i'd ask for a refund from the other ENT I saw in March that totally missed the raging sinus infection i had and sent me to a neurologist. He should give me a refund for his copays, the neuro's copays, and my mri copay -- gimme $200

Third, i'd ask for a refund from the urgent care place, where the doc suggested i stop taking pred cold turkey and just take some extra strength tylenol. when i tried to confirm it was just the over the counter stuff, he was all "no, i'll write you a script for tylenol 650" -- it's the same shit, dipshit. thanks for trying to waste my prescription copay too! gimme $10 because luckily that's all I had to pay out of pocket.

i wouldn't care, except you know, i only have $600 in my FSA for the rest of the year. Being sick is freaking expensive enough without other people wasting my money. I anticipate spending $3K out of pocket on drugs and office visits this year, but I don't want to go over that amount if possible! I've spent about $5K on medical care over the last two years already, I know many people spend way way more, but we have really good insurance (and we pay the premiums for it), and i'm not made of money. There's no extra money just floating around to spend on healthcare just because it's healthcare -- it all comes out of the same budget that I have to use for like, food and rent and transportation.

hungsea? nauser?

so i have this weird combo of hunger and nausea again. i woke up at 3:30 am with it, so hungry, so nauseous. need to eat, but everything sounded gross. i finally forced myself to eat a banana. then, i was still hungry, so i ate the other banana. they were the best bananas i ever had. then i could finally go back to sleep. i had a yummy breakfast thanks to my husband this morning, and now it's time for elevensies. i'm like a bottomless pit again, but i'm eating a more balanced diet, and so far have lost 10 pounds. hooray hunger-nausea!

ugh, i hate being nauseous at work though. throwing up doesn't relieve it either. and i hate throwing up at work. i took a zofran and am still waiting for it to kick in.

also fun is this weird fingertip problem i now have. it started out innocuously enough last week, just two fingers were a little sensitive. figured i had some little papercut or something that was aggravated and it would go down on its own. of course, those were the fingers i kept stubbing on everything, and it felt like lightning bolts of pain shooting through my hands. but they didn't go down, then every finger joined in. it feels like someone took a hammer and smashed each one of my fingertips. they are throbbing and red and it hurts to touch anything. i can't even like, dig around in my purse for something because the pain makes me want to cry. i am forcing myself to type because hell, i'm at work and have to type anyway. and at least if i'm constantly typing, i'm constantly in pain, so it's less shocking.

i've been doing hot water soaks with epsom salt, but it didn't seem to be getting better. i also had to run a paintball game over the weekend, so my hands took a lot of abuse and looked really bad and infected. so on sunday i went to this urgent care place and waited around for 3 hours. the guy there said they weren't infected, and suggested to take tylenol for the pain. he also suggested that i just stop taking the prednisone to see if it cleared up my hands. um, no. it's prob not a good idea to go from 30 mg pred to zero. i may be a little paranoid about infection because i'm on prednisone, 6mp and have crazy uncontrolled diabetes right now, but i'm pretty sure that stopping pred cold turkey is a bad idea. i wish i hadn't gone to the urgent care place, but i knew it was the only way my husband would chill out. i knew they couldn't do anything for me, but he has so much faith in the medical profession. and at least it wasn't as expensive as going to the ER.

i'm happy i had a med professional tell me my fingers weren't infected, but i'm surprised the best he could do was offer me some tylenol and tell me to put neosporin on it. like duh, i've been soaking in neosporin for a week, you don't have something better??? bah, anyway, it's just gonna be one of those days. my fingertips are painful, i have more painful bumps on my mouth and tongue again, i wanna throw up, and my cat puked on my laundry this morning. at least i'm not running to the bathroom every half hour. hooray fake remission! now just to get off the damn steroids and see if i can get real remission and all these stupid side issues will go away.

salmon day

i'm finally not depressed, but now everyone else is being mean to me! shit's just broken all over and i keep getting blamed for things that are not my fault. i'm nice and go the extra mile for people, but everyone is just being an ass to me. what the hell did i do to anybody??

then i went to the ladies room to take a cry break (which I haven't done since last september) and it was full of loud idiots from the gym. sigh. i can't even look forward to having a nice cold beer or margarita when i get home, because any booze makes me instantly sick. i need to be in good shape for this weekend. i need to not drink myself into the hospital. but i kinda want to. i need the ultimate vacation... but i just need to hang on a few more weeks.

i miss coffee

omg i miss coffee. the last month, i've woken up every day with a hangover, but not from drinking. then i'm nauseous all day (unless i take zofran, then i have heartburn instead), and i'm just cranky and tired and irritable. I'm dumber than usual too, just this total brain fog that i'm not even aware of until i catch my stupid mistakes later. May sucked donkey balls.

my average bg is in the 300-400 range, even after upping metformin to 2000mg/day, so now i'm on basal insulin. the insulin shots are sooo easy! omg, i have a levemir flexpen, and it has the itsy bitsiest needles -- you just crank the knob to your unit dose, insert needle, and push. feels like nothing. humira and procrit both burned, hurt, poked, ouch. shooting insulin is easier and less painful than the stupid finger prick for the glucose reading. my cortenemas are more painful than my insulin shots.

i'm hoping getting the blood sugar under control will help how disgusting i feel, because the UC is in fake remission again. so i hope to taper off oral steroids and see how that goes. hopefully be off steroids by the fall. might have to be on insulin and whatnot for a while even after i stop taking pred, but as long as the bg numbers come down and the uc symptoms don't come back, i'll be a happy camper.

also, that ent dude i saw was totally wrong in March, and I had a raging nasty sinus infection this whole time. just got done with a course of ceftin, after my awesome ent surgeon put rubber hose up my nose and cleaned out a ton of nastiness. ugh, i totally almost puked when she showed me. she also prescribed these nasal rinses, which feel really weird, but hopefully help keep things nice and clean. my general doc said between the high blood sugar and the immunomodulators, i'm a potential walking petri dish. i'm hoping i don't have to start putting steroids up my nose, because that would be just ridiculous.

and in other news, my big event is this weekend. hopefully i have enough drugs and helping hands to get me through it.

i feel like i'm hanging on by my fingernails. i see the ent for a follow up next week, then dr. awesome at mt sinai. i'm so tempted to take a week vacation to just stay in bed and do nothing -- i'm so freaking tired. i'm constantly running around and convinced i'm forgetting something. i'm tired of taking care of myself, of poking myself and making decisions and trying to figure out how to not start puking everywhere -- as soon as I try to do anything, i get all sick all over. the idea of going to mt sinai for a week of other people poking me with stuff and telling me what to do sounds so relaxing

happy belated birthday!

this flare is now officially a year old. i was in the hospital a year ago. i'm still chasing real remission. without steroids, i'd probably be back in the hospital.

I hate you, Flare. I wish I could drop you off at a babysitter for a few hours or send you away to live with some distant relative forever. you're an expensive brat.

has a sad

there's so many post that live in my brain that never make it out alive. i'm so bad at journal keeping

anyway, i'm getting put back on cortenema and i'm really bummed about it... but in the scope of things, it's not that bad. and maybe it'll work, and i'll be back in nice fake remission and we can try the steroid taper again. yay?

a battle to the death!

my diabetes and uc are locked in a battle to the death. being lazy and ridiculously hungry, i haven't been sticking too my diabetes diet for months (obviously). i was almost tapered off the prednisone, but had to get jacked back up because my body is attacking my colon again. i'm on 150 mg 6mp, 30 mg pred, and 500 mg metformin. anyway, i feel crappy all the time. i have to remember, "eat crappy, feel crappy" but again, i'm lazy and bad foods are delicious and easy!

anyway, that brings us to this weekend. i didn't sleep well, took my pred, and had a big delicious breakfast. nothing ridiculous, but definitely naughty for a type 2 diabetic -- fresh fruit, waffles, syrup, eggs, sausage, om nom nom!

i took the express bus to crazytown and totally stressed myself out. pred helped make me crazier than usual, gave me hot flashes, and i was hungry again. so i ate a cheeseburger, fries, and a regular coke. bad, bad idea. i felt better for a little while, but the festival we were at was crazy hot. i mean, 95 degrees in may. i was dressed for the weather, but damn, not ready for it yet. had some lemonade, had an all natural no sugar added fruit smoothie, had some water. tried to find some shade to cool off in, but it was stuffy in the shaded tent. feeling crappy, i was curious and randomly decided to check my blood sugar.

HI, it said.

"hi meter, but that's not really helpful... let's try this again."

HI

dammit. my meter has a range of about 60 to about 500. this was not good. my personal emt checked my pulse, said it felt good, and agreed to not take me to the hospital if i agreed to leave the fair. finally, i get a weekend when my UC is quiet, and instead i'm on the fasttrack to diabetic coma. lame. this is what i get for not taking care of myself!

anyway, a few hours of napping in the air conditioning and I felt lots better. i drank 80 gallons of water and successfully fought off the crazy nausea. we did a little shopping excursion to help me survive the fair on sunday, got some delicious dinner, did some more hot tubbin, then i got a great night's sleep.

take two on sunday: breakfast was sausage in phyllo with cheese, eggs, fresh fruit, and potatoes. not the greatest idea, but i was hungry and not going to be picky. got a diet coke on the way in to the fair (I'm always tired so I save caffeine for special occasions like weekend getaways). i was super hot really quickly and just dripping sweat. i guzzled water like my life depended on it. i wore a floppy hat and carried an umbrella for portable shade. i couldn't eat most of the day, which is good, because usually i can't stop eating. had a cheesesteak, more water, and sugar free ice cream. so i'm slowly getting back down, i'm at about 300 still, but at least it's coming down. now i need it to stay down.

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!

- Posted using BlogPress from my iPod touch

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.

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.

headache

i spend today in a dark room, trying to keep my head from exploding. Dr. Google is no help.

wotd: tired

i hate waking up tired. i am so wiped out today. i was tempted to stay home, but i'm glad i came in. my colleague is home sick today. if it weren't january, i may have stayed home, but i don't want to run out of vacation days before the end of the year. and i'm just tired, everything else is pretty ok *knocks on wood*

it just sucks that even when i try to take it easy, i still end up tired. and being tired just makes everything that much harder. which makes me cranky. i need a nap!

wotd: relaxing

hung out with hubs and friend from college most of the day. got some knitting done. had a delicious breakfast of bagel with lox (mmmmmm so good). when my friend hit the road, i snuggled in the bed to watch the playoffs, and took a nice nap. woke up to see the awesome end to the cards/packers game (though i really wanted green bay to win, that was a nice game). hubs made yummy dinner. did some more knitting. went back to bed. yup, a perfectly relaxing lazy sunday. i need more of those :)

wotd: reunion

got together with a bunch of folks i used to be on the newspaper with in college. good times. i forgot how funny these people were. i have a tendency to turn beet red, so this was a game back in the day to see who could make me blush the most. lots of giggling ensued. i hope we get together and do it again, and don't wait 10 years.

another bad day :(

gotta email dr. I, woke up to another bad day. but i got my heating pad and it's friday so hopefully it'll be an easy one. yesterday i had a pretty good day. i think i'll need to hold steady at 30 mg pred for another week -- i'm afraid 25 will push me out of fake remission. i'm eager to get off the dang steriods, but i know the 6mp probably isn't working yet. patience, grasshopper.

wotd: paperwork

just got done filing away all my adp fsa claim forms for 2009, just in time to start my forms for 2010! adp hates trees -- there are so many forms! and i can't send them via email, i have to print them out and fax them over. how silly! i love when they request receipts though -- pretty much, only my walgreens charges go through without them asking for a substantiation form. but every doctor's office and hospital visit needs a form. like what the heck else am i purchasing at "Somerset Medical Center" for $250 except my hospital deductible? or "Mount Sinai Hospital" for $20? at least it's easy for me to fill out the form online, print it, and walk over to our fax machine to send it out. how do folks without laid back office jobs do it? kinkos? well, at least ADP will be able to keep people in jobs, what with all the paper coming in. it's more likely just faxing over to a robot or OCR scanner, but i'd like to imagine that there are humans involved somewhere. otherwise, it's just computers making more work for other computers.

word of the morning: agony

omg, i was so tempted to stay home today. the pain is excruciating. i had a couple good days in a row, and didn't need my heating pad at work, but today is a two heating pad day. i wish i had two heating pads. i'll be switching between my crampy sad tummy and my achey colon. it's like it's mocking me -- i just got done telling the doc on monday that i felt 20% better than last month. now i'm having a craptacular day. i already had to run down the hall once today, and i just got here! bah.

i just wish there were something i could take to make the spasms stop, but not knock me all the way out like prescription painkillers do. i took some tylenol, but i don't expect it to do anything. the tylenol was for the headache i woke up with. so far, all it's done is chase the headache from the left side of my head to the right side of my head.

it's frustrating, the ups and downs, but at least it was quiet yesterday and i was able to make it down for my bro in law's birthday dinner.

wotd: diet

i've always been on some kind of diet, and now i'm back on the "eat like a normal person" diet. i've been such a brat on pred and eating whatever isn't bolted down or running away and the time for that is over. eventually, i'd like to get back to my 1500 calorie/ day nutritionist prescribed diabetic chick diet, but i know if i try that right now i'll fail miserably. so i'm just being more aware of what i eat, trying to make better choices, and eat less and less until i get to where i need to be.

now that i'm weaning off prednisone i don't have crazy munchies. I'm also not eating garbage anymore(no more fast food). i had an ensure shake, 2 kelloggs protein bars, a microwave can of chicken noodle soup, and some granola bars. still high calorie, but also high protein to hopefully stave off hunger. also a bit more nutritious than what i've been eating before. plus, by keeping my blood sugar steady, it should be easier for me to lose weight again.

at night, we met up for my brother in law's birthday dinner. it was fun being with hubs' family, and the food was delicious! i did go a bit overboard at dinner, but it was goood. italian wedding soup that was loaded with veggies, shrimp and angel hair pasta with a bold plum tomato and garlic sauce, a little calamari, and a chocolate lava cake mmmmm. so the cake was naughty, but it was soo good. and i won't have dessert again for the rest of the week. baby steps and moderation, even moderation.

word of the day: Gothamphile

today I journeyed into nyc to see awesome Mt. Sinai doc. took about 2 hrs and 20 minutes to get from my front door to the reception desk, even though some idiots had an accident on the turnpike and tried to make me late. otherwise, the drive to hoboken was uneventful, the walk from the parking deck to the path station was bitterly cold. i stopped somewhere to try to buy a scarf, but they were all sold out. the lady at the store loved my bag though, so then i was all warm and happy from the compliment. i love my bag - my sis found it for me and it's purple and black zebra and completely ridiculous, but it fits all my crap without being enormous and bland. anyway, this is a post about nyc, not purses.

mmmm delicious nyc street food -- and convenient cold weather gear!

path ride was quick, jumped off at christopher street and snagged a cab uptown. got to the office 20 minutes early. and waited and waited. this guy always runs a little behind, but today was superbehind. that's ok though -- i take the whole day off work and have ideas for hanging out in the city after the appointment, but if it runs late, I save those nyc plans for another day. probably in the spring, when it's not -20 degrees out.


doc visit went really well. i admit, i'm feeling much better than i did in nov/dec. fake remission has its benefits. but the side effects of the pred are wearing me out -- i'm so fat and puffy, my cheeks are all puffed up and red. the flushing sucks and the night sweats are annoying. luckily, the insomnia is much less, but i think that's because i got completely sleep-deprived and just cannot physically stay awake. but we're going to continue tapering off while we wait for the 6mp to work. he was cautiously optimistic that i might be able to avoid surgery. this was great news! i was so resigned to it, and totally expected this visit to be all about setting up dates with surgeons, but instead it's just back to wait and see. yeah, it's annoying and i'm impatient, but as long as my symptoms are mostly under control (which they are atm) and i don't deteriorate, i might actually not need surgery right away. woo hoo! plus, even if the 6mp doesn't work, and i do end up needing surgery, a few more months of waiting will help me be healthier for surgery, so recovery would be easier. so i go back in about a month to make sure i'm still on track. so i'm gonna try to not fixate on UC this month. which will be easier now that my symptoms are mostly under control. yay!

then we went to lunch at one fish two fish, right across the street from mt. sinai. omg, it was so good. the seafood bisque was so delicious and warm, it was a great day for soup. i had crab legs and a lobster and red velvet cake... mmmmmm. hubs got fried catfish and pecan pie -- i helped him with the pie. since the appointment took so long, we decided to skip any other nyc activities and just headed home. we escaped nyc ahead of rush hour and i fell asleep on the drive home.

ice rainbow

i'm such a tourist whenever i go to nyc. i have no shame about whipping out my camera and taking dumb pictures. whatever, i love nyc. sometimes i miss working in the city, but when you work there, all the little annoying things about crowded cities add up and make you hate it. i'd much rather go for visits rather than have to go there everyday. and in the winter, the buildings make giant wind tunnels that blow the heat right out of you. though i really miss nyc on gorgeous summer days -- i used to grab lunch, sit in madison square park, and people watch for an hour. that is 1000% better than anything you can find in corporate park, nj.

word of the day: happiness

today was a happy time, all across the universe. got up early, go chocochip pancakes for breakfast, the dude at walgreens was friendly and nice, my football team won the game, had a blast watching the game with friends, drove up to see my mom and sis and go to the movies, the movie was pretty cute, went to the diner for dinner and ate delicious scallops. drove home and cuddled with mags. going to bed and tomorrow heading to nyc to see the doc. had a little gurgling, burbling, and pain, but again, no accidents no urgency and no bleeding. fake remission is here!

also, added a cornify button to the site. i have it in my browser so if i need instant happiness on any page, i can summon rainbows and unicorns. sparkly happiness is just a click away!

look at that face, and that belly! that's my snuggle buddy.

word of the day: alpaca!

omg, totally yarn splurge. and got to see the babies at the farm. today was a gorgeous day - everything just went smoothly.

hubs brought me delicious breakfast yummmmmm

dropped off my car for service at the mechanic.

went to the mall to have my glasses adjusted - turned out they were totally busted and i needed new frames. they happened to have them in stock, for $40. cheap! i was in and out in less than 30 minutes.

spent time with the crias and got lovely yarn

lunch was delicious. had a weird craving for shecrab soup, and the diner just happened to have seafood bisque! it was goood.

did a little errands/shopping - even walmart and it wasn't horrible!

expected to pay between $700-$1000 for car repairs, was about $200. and was ready as soon as we were done with errands.

i'm so used to swimming upstream, it's awesome to just go with the flow.

perhaps llamas are good lluck?

ever see jon stewart, on weed?

aww yeah, half baked is on! too bad christie is gonna put the kibosh on medical mj in nj -- would prefer a little buzz to ease the pain than taking more narcotics and getting totally knocked out tonight. if pfizer could find a way sell weed as a prescription drug, you would be go down to walgreens and just pay a copay. drug policy in the US is about $$, not patient care.

word of the day: sleep

I've transformed from a 30 yr old woman, to a 90 yr old lady, to a 5 yr old cat. i wake up, eat, go to sleep, repeat. today i went to take a short nap and didn't wake up until 4 pm. it was a good day for it though - i had no plans. and my colon and i were sleeping at the same time, which is nice. usually, when i try to sleep at night, she wants to stay up. so when we're on the same page, it's good to catch up on the beauty sleep. besides, now i'll be well-rested for the rest of the weekend -- a trip to the llama farm tomorrow, followed by a video game playing marathon, the football sunday and a drive up to see a movie with my mom and sis. monday, a trip to nyc. yeah, good thing i stocked up on sleep today.

Happy New Year!

see more Lolcats and funny pictures

Best wishes for a fabulous 2010! Celebrate even if the champagne is invisible; dance even if the music is only in your head.