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.