Wednesday, June 30, 2010


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

Monday, June 28, 2010

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.

Tuesday, June 22, 2010

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.

Friday, June 18, 2010

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.

Wednesday, June 16, 2010

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.

Tuesday, June 15, 2010

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.

Monday, June 14, 2010

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.

Monday, June 7, 2010

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