Sunday, May 31, 2009
i was sick sick bfore, bad enough to get scared and go to the hospital. and i had never given in and gone to the hospital for UC before. i'm the most anti-hospital person out there. the only time i've gone to the ER is when i blacked out at work, and kinda had to. usually, i'm the visitor/driver of the ER patient. my UC hospitalization was accdental -- i think my husband and GI doc conspired to trick me ;) -- they told me to go to the hospital for a stool sample since the turnaround at the quest lab was too long, found acute pancreatitis and kept me for a few days. i woulda been happy to stay except for the problems sleeping with the IV, the nurses that hurt me during BG readings, and that they really couldn't do anything for me besides gimme dilaudid. it was nice not having to figure out what to eat, and the bed was comfy and i was resigned to relaxing, not feeling like i should be cleaning up around the house or going to work. happy though, because without those couple days, i might still be trying to treat myself with diet and meditation instead of drugs.
THIS IS FUCKING WORSE! i take zofran for anti-nausea, and i took it 3 hours ago, and it's not working right now. why does stuff stop working at 4 am? i'm not sure i can go through another week of this. i want to flush the rest of the pills and pretend i'm still taking them. the side effects are worse than the uc. i guess if i could just lay around the house all day and take it easy, i'd be fine, but having to go to work? i can't sleep, i'm up all crazy hours, i feel miserable, i really shouldn't be around people. i'm afraid to start throwing up, but maybe i should just go do it and see if i feel better. i can't see, i can't think, my stomach is in knots, i'm still having crazy UC symptoms -- i feel worse than i did when i was in the hospital, and I don't have the luxury of taking more days off to sit around and wait to feel better. fuck. and this is the worst freaking timing too -- my scenario game i'm producing is this weekend, and Friday I need to do all the pregame setup, sleep over my teammates' house, then go all out saturday to rock the house. i can't be up at 3 am taking over their bathroom the night before the game. i should probably get a hotel room so i only make myself miserable :)
dammit. at least by friday i'll be done with flagyl. then it'll just be prednisone, which at 30 mg i'm not sure if it is contributing to the misery or not. i'm ok having roid rages as long as i'm not nauseous or having this insane stomach pain. i start remicade hopefully on the 11th, which i think means i don't have to take the pred past that date. i hope i never have to take flagyl ever ever ever again. this drug is evil. i'm not sure whether to eat, throw up, or eat something with the intention to throw it up. anything to just MAKE. THIS. STOP.
Friday, May 29, 2009
apparently aetna is taking their time approving the remicade, but we already got a quote for the copay ($50, treated like a prescription drug apparently). whatever. i got $700 left in my FSA. The copay for the asacol was $50 per month, then the other stuff for the "other direction" was also $50 a month, and was doing jack... so $50 for a drug with some efficacy is a bargain!
I have this dream that next time I get flex sig there's no visible damage. that day, i'm throwing a fucking party!
plus i got a anti-nausea med, apparently designed for chemo/radiation patients but gets used for morning sickness and those ladies loooove it. worked good during the day... then nightfall
night was awful! i woke up nauseous and had over an hour until my next scheduled dose. my whole abdomen was wracked with pain. my kicked-in spot on my left side was extra painful, even to the touch, and felt hard/lumpy. a quick trip to google scared the beejesus out of me. i wondered if it would stop, or if I should go back to the hospital. I wondered if i could take the next zofran early, or if that would make it worse. 3 am is not the time to need answers. i hugged my heat pad and passed out. on the couch, like an idiot, on my hip, so now that hurts too.
*sigh* eventually i woke up again, took the zofran, got in the bed, and contemplated getting ready for work at 6 am. husband came home from being on-duty, and it was finally so comfortable i went back to sleep. woke up late, nauseous again but too early for the next dose. ate breakfast (out of rice milk), ate morning meds, and waited for the doc to tell me if i could take zofran now or if I had to wait the full 6 hours. luckily, i can take it every 4 hrs if i have to, but he prefer if I didn't. good, i'll try to wait the 6, but i'm glad i can take it earlier if needed.
i really hope this flagyl/steroid combo is worth the aggravation. i tested neg for c.diff, but they gave me the flagyl anyway because the steriods weren't stopping the inflammation. i sort of feel like i'm throwing a bunch of drugs at the problem and hoping something sticks. i just wish they didn't make me all dizzy, nauseaous, feverish with no fever, headachy, and generally unwell while they battled whatever they're battling. it's totally hard to work.
Wednesday, May 27, 2009
anyway, besides the pain and aggravation, I had my first dose of dealing with my rude, ignorant building mates today since i've been back. my coworkers are wonderful, but some of the so-called "women" that work here take me back to my high school days. they burst in the ladies room with loud conversation. I tried to pause until they left, but failed and made a noise. Which they proceeded to comment on loudly. wtf? eventually they left, I teared up, calmed down the red-eyes and went back to my desk.
granted, farts are funny. part of me thinks i should just shout "my bad!" -- but i'm enough of a weirdo as is. it just hurt because they were ignorant. i'm not gonna waste my time educating them or excusing their behavior. i'll just be happy in the knowledge that there's a reason why they are in low paid, low skilled positions, and one day they won't be young and healthy anymore... but they'll still be stupid.
Tuesday, May 26, 2009
have no idea why that happened, but apparently, it's not my fault. i think that's gonna take a while to sink in. i did what i thought i was supposed to, and the disease progressed anyway. i'm glad i went to the hospital when i did, and i'm so happy with my new GI. he's with the same group, so it was also uber convenient. he sounds almost excited to deal with my case, kinda like how my general doc got excited about treating my diabetes. like a home-owner do-it-yourselfer that discovered a project they knew how to tackle. so that makes me feel pretty positive. although parts of my want to just curl up in a dark room with the cure for a day or so, but i don't have enough vacation days left for a pity party. hopefully work will be mellow a little longer so I can shuffle around here in pain and folks cut me some slack since I was out last week. i have a great bunch of coworkers.
while i was hoping that the flex sig would reveal it was me making mountains out of molehills, i am sorta relieved it was actually really pretty bad. like, ok, i'm not crazy... it is 7 kinds of fucked up over there and needs heavy drugs.
my TPMT enzyme is a bit on the low side for imuran/ 6-mp, so we're jumping to remicade infusions. yes, chimeric monoclonal antibodies still scare the freak out of me. but that's because they sound weird and scary, and the more i read, the more i understand, and the more sense it makes. the promise that it can induce remission and halt the progression, actually HEAL the damage instead of just make it less painful... that's very enticing. I was totally ready to go with the 6-mp too, read the whole article my doc gave me an everything. I kept calling it the TMNT enzyme, for teenage mutant ninja turtles, but apparently I am officially genetically more pirate than ninja.
coupla days and I'll be ready to rock. continuing steroids, continuing asacol, taking a big-guns antibiotic in case i have c.diff (because the steroids should be working by now and are not), waiting for the PPD to confirm I don't have latent TB. Might have to do the PPD a second time, but even that means I'll be starting Remicade in a week or less. Might even be this week.
i'd be lying if i said i wasn't freaked out by the notion of a coupla 3 hr iv infusions of a mouse/human protein. but it's time to put the big girl pants on and trudge through this one. best case - remission and a normal life.
i just hope the spouse is ready. everyone in the doc office is being very positive, but I know it's not all rainbows and sunshine. i'm hoping i don't have to take benadryl, since i already take 2 antihistamines maybe i'll get away without it. I'm sure the benadryl contributes to that post-infusion fatigue I've been reading about. but even with some inconvenient side effects, people are so happy with the benefits, so I think it will be totally worth it. I'm not sure if the spouse knows the side effects and is putting on the happy positive face, or really thinks that after a 3 hr iv drip, i'll be ready to go do everything i want and need to do and have energy to spare.
I was really hurt this morning -- the first few days back from the hospital, i felt the best i've felt in a while. i had to remind myself to slow down, i was invincible! i got so much stuff done! i had mad insomnia and was crazy hungry, but wow, brain fog was gone! pain was gone! then, pain came back, tiredness came back, pain and awfulness came back, and i'm feeling pretty wrecky today. the dishes haven't been done since I did them before going to the hospital. there are bags of trash everywhere. i have to step over everything to get around the house. yes, most of it is mine, but some of it is his and he could've taken care of it already, but has not. i don't understand why. i understand the need to relax, but i was gone saturday night with my mom and all day sunday working, and he did absolutely nothing. then this morning, we were saying goodbyes after the doctor visit, and i said, "i'm sorry to ask, but I still really need your help alot around the house. i really don't feel well." and he kind of dismissively said, "don't worry, after the infusions you'll be much better." I didn't really know how to take that. I really just wanted him to say, "don't worry, i'll take care of that for you." instead of what sounded like, "don't worry, it'll be waiting for you to do as soon as you feel better." i dunno, it made me mad. like my reward for getting better is getting to do chores. woo fucking hoo. but if he truly is leaving it for me when i'm "better" he's in for a surprise -- i'm not doing any of it. i'm calling in outside help. because the longer it waits, the grosser it gets, and i just can't handle wasting my upcoming good days stuck inside doing fucking chores.
Friday, May 22, 2009
10 am, primary physician (with a very light scale, clothed but after eating a bowl of cheerios): 190
1 pm, GI doc, clothed, before lunch: 200
well, at least it's going in the right direction, albeit slowly :) i feel 190 :)
got a nasty surprise fom my postlunch bloodtest. i was a little indulgent for lunch, then took a swig of this lemonade at target that was more sugar than lemon. it should be called "simply sugar" BLECH!! anyway, my reading was 355! holy crap. i think i'm just dehydrated, overtired, and dumped a little too much sugar in my tank. i shoulda grabbed a water on the way in... that far corner of target had like no good cold drink options. pretty bad when going to freaking target is a health hazard. i'm a little fiat.
Tuesday, May 19, 2009
fast forward to monday morning at the lab, and i'm good and fasting. but they can't do a sample and turn around results by thursday. so they suggest i go do it at the hospital. we go to the ER and get the blood tests, stool and urine samples. surprise pancreatitis! they admit me and tell me they are keeping me overnight. sent me for a cat scan and more bloodwork, and started me on iv steroids. i was kinda bummed, but i'm not the doc. i'm giving in to the professionals. obviously, the pancreatitis has been going on for a bit, and is beyond my control with diet, so it was good to go in.
the er doc was very nice and sounded like she had some gi stuff because she ws familiar with all the tests i've had to do up to this point. the er nurse rocked too, and i was put in isolation in case i had c.diff. they're taking cultures, which was a bit embarrassing because yeah, i still have poo shame. i guess if it looked like poo instead of slime from the black lagoon, i'd be less embarrassed. i'm like, sorry for being extra disgusting, but all the nurses are so nice here.
i also got some dilaudid which is helping with that weird random hip pain. had some x-rays to check that out today. ortho thinks it might be spinal or illobital band, or bursitis, but not arthritis, so i'll prob have a followup visit with them after i get out of the hospital.
so it was my first hospital overnight, and aside from the noisy iv machine waking me up, it wasn't so bad. i got kind of annoyed when i couldn't eat due to the pancreatitis, because i had been fasting since sunday night, but i finally got to eat today, which made it much much better. i have to stay again tonight, but i think i'll be more prepared this time. definitely feeling a little better, uc is not as active as saturday, but i'm paranoid it'll start up again as soon as i leave. another annoyance was that because i wasn't eating, they put me on a dextrose drip, which raised my blood sugar, so they gave me insulin. since i had a cat scan with contrast dye, i can't take the metformin for a few days, and since they're giving me steroids for the uc, that's gonna raise my blood sugar too. but i'm done with trying to figure this stuff out -- it's up to the pros to figure out how to balance ibd vs diabetes and i'll just do as they say. take my drugs, eat right, exercise. no more DIY medical attempts. probably less drinking and no red bull for awhile.
i have to stay again tonight, but hopefully can leave tomorrow. it's not bad being in the hospital, but it's boring and i feel weird bothering people for info and stuff i need. i'm less sleepy today, i got a little teary this morning, but i think i was just tired. i should sleep better tonight i hope
so i didn't want to go to the hospital, but it was definitely the right move.
Monday, May 18, 2009
Sunday, May 17, 2009
i have more annoying tests tomorrow and an appt on thursday. i always wonder how it could be possible for someone to be sick as much as i am, and still have trouble losing weight. i mean, if i'm gonna go through all this agony, can't i least drop a dozen or so pounds while we're at it?
our new fun symptom is pain in my left hip. it hurts to move in any direction. forget bending over. i can walk on it, but it hurts to sit. gonna be fun at work tomorrow. started up late last week and just getting increasingly bad. of course, can't take anything for it. and google is not helping, it just gave me scary new diseases to think about. i'm trying to remember when i did something stupid to hurt myself, but i'm drawing a blank. i did go dancing on it anyway on friday night, so that probably didn't help, but i can't spend my whole life in a bubble wondering when i'll feel better. sometimes, i just have to go out anyway and do something fun, to make up for all the not fun i have to do.
Monday, May 11, 2009
Fat kid/ compulsive overeater: being alone and lonely gives you plenty reason and opportunity to eat.
high school - vegetarian. for the most part surviving on snickers bars, nestea ice tea; booze and cigarettes on the weekends. still fat.
College life: quickly gave up on the vegetarianism due to being lazy. ate garbage but burned calories running to class and chasing busses. Chubby but cute
Emotional eating. Rewarded myself every morning in NYC with something chocolate and/ or baked. Many a Caramel Macchiato. Then frappucinos and milkyways waiting for the path train back home. watched my dad be devoured by cancer. scared, frightened, sad, hated my job, hated everything, hated life. felt sorry for myself and tried to bury it with food. got way fat.
Gluten free. Quack nyc doc said i was allergic to everything. Tried to avoid sugar, gluten, yeast, dairy, etc. Impossible. went back to eating garbage.
Weight watchers. lost 20 lbs, got stuck at 200. could not understand how i could possibly eat fewer points without going crazy from hunger.
2003 - 2005
Atkins. did supergood, not the "cheeseburgers and bacon" version that people think is atkins. Got down to 170s and kept it there. Started running. It was awesome.
Standard slacking diet: got hurt and stopped running. kept eating though. not anything obviously terrible, but apparently me and carbs don't get along when I'm not exercising. regained some weight, but stayed under 200.
Uber junk food: Talk about not caring anymore. I ate super poorly for over a year -- dieter's backlash I suppose. Then got diabetes. The best thing was getting diagnosed and sent to a nutritionist, who makes me keep a food journal. I'd be embarrassed to write down how I ate before.
Diabetic Exchange: slow and steady, weight started coming off. Limiting yourself to 1600 calories a day will do that. Now limiting myself to 1500, and trying to reduce carbs. 150 g/day seems like a lot for diabetes.
SCD - too much work for not enough improvement (though I suspect I am just too impatient)
Low-residue: naturally gravitated toward this approach and bloated up to 230. Trying again in a conscious and careful manner to still lose weight. Maybe now that i'm less fat, things like pasta and rice will have less of an effect on my blood sugar. even a exchange-friendly portion was too much back in december. if i get spikey again, i'll just do low carb and low residue and eat whatever is left, which i think will be chicken, carrots, and maybe cardboard.
I wonder how many other things I could have accomplished with all the time I spend thinking about food and making decisions about what to eat. When is iams going to come out with "people chow" that I can just scoop into a bowl and eat twice a day? I won't even need the cool hairball formula like my cats get.
Basically the same stuff overall, just a less strict approach. I think it'll eff with my blood glucose, but that's why i have a meter. let the experiment begin.
- enriched refined white bread, buns, bagels, english muffins
- plain cereals e.g. Cheerios, Cornflakes, Cream of Wheat, Rice Krispies, Special K
- arrowroot cookies, tea biscuits, soda crackers, plain melba toast
- white rice, refined pasta and noodles
- avoid whole grains
- fruit juices except prune juice
- applesauce, apricots, banana (1/2), cantaloupe, canned fruit cocktail, grapes, honeydew melon, peaches, watermelon
- avoid raw and dried fruits, raisins and berries.
- vegetable juices
- potatoes (no skin)
- well-cooked and tender vegetables including alfalfa sprouts, beets, green/yellow beans, carrots, celery, cucumber, eggplant, lettuce, mushrooms, green/red peppers, squash, zucchini
- avoid vegetables from the cruciferous family such as broccoli, cauliflower, brussels sprouts, cabbage, kale, Swiss chard etc
Meat and Protein Choice:
- well-cooked, tender meat, fish and eggs
- avoid beans and lentils
Nuts and Seeds:
- Avoid all nuts and seeds, as well as foods that may contain seeds (such as yogurt)
- as directed by your healthcare providers
I don't think SCD is working or is going to work. It really is too hard for me to maintain. Seeing new GI doc and hoping to try steroids and imuran. the problem with buying in to a diet-based treatment plan is that I feel so overly responsible for the symptoms i'm having. I don't need more reasons to beat myself up. at night i wonder, is it something I did? did i eat too much applesauce? why is this still happening and why is it getting worse? i've noticed some general things and I'll probably stick to them, but after 3 weeks and the input from the new GI guy, I don't think it's worth it anymore.
Avoid raw veggies and fruits, cook everything
minimize stuff with seeds, nuts, high-fiber stuff, beans
avoid bread, pasta, rice, soy, wheat, potatoes and most dairy
keep eating the yogurt because it's yummy, easy, and cheap.
keep eating eggs because they are also yummy, easy and cheap
Tuesday, May 5, 2009
Monday, May 4, 2009
I’m gonna have repercussions now for what I did to myself with medicine, so I had to wring every last bit of fun out of the moment to make the next few days worth it. I always have some immodium aftershocks, and between the saturday wedding and taking a megadose yesterday with a nulev chaser, i expect my body to bring the pain.
Foodwise, I took some risks but hopefully not too bad. yogurt for breakfast, an orange and 2 slim jims for lunch during the day, dinner was shrimp and scallop scampi with asparagus. it was served over rice, so I probs ate a few grains, but whatevs. also had cream of crab soup, which was sooo good! there were things in it that looked like noodles, but also coulda been pieces of crab or imitation crab, so since it was impossible for me to tell and they were yummy, i ate them. i know scd works best with fanatical adherence, but I can't maintain that level. I hope my 85-95 percent rule works out. I'm not gonna drive myself and everyone around me crazy 24-7. Control what I can, whenever I can, as much as I can, but accept what I cannot control. I'm not gonna refuse food because it's not perfect, but I'll try to get as close to perfect as possible.
Saturday, May 2, 2009
i slept most of the day then got up for the wedding. not taking any chances, took immodium and grabbed the always. had an absolute blast! music and dancing was great, met total strangers and had fun conversations. bride and groom were lovely. i hope they like our gift -- i made amigurumi piggies based on the picture on their wedding website. The lady at the hallmark store thought they were cute. i might have to make one of my own to keep :)
I was good about food too. during cocktail hour, DH hunted down things that were legal and kept me away from temptation, mostly :) I did enjoy a few drinks. gotta live a little. I got the Chateaubriand entree, and it was so incredibly good! I could only eat half. In my old days, I woulda housed the whole thing, and the mashed potatoes. as it was, I did not stuff myself and just avoided the potatoes like they weren't even there. I did eat a roll though, because I haven't had freshly baked white bread anything since december. it was fabulously good! i hope i did enough dancing to burn most of it off :) I got pretty drunk off sweet tini's -- peach, peach, watermelon, more peach, plus champagne, gin and tonic, and more champagne. But then i had a kamikaze that was so sour, it took forever to drink and i sobered up. weird. Also, I did not eat any cake. I seriously wanted to, but gave into other temptations and could walk away from frosting goodness. go me!
Friday, May 1, 2009
4 egg whites
dash of salt
1/2 cup honey
Make sure your bowl and whipping attachment are dry as one drop of water will ruin your meringues.
Let the eggs sit out on counter until room temperature.
Separate eggs by putting the whites in a bowl and either throwing away the yolk or saving it for a custard.
Whip up the egg whites until they are white and stick to the spoon.
Slowly drizzle the honey in and add a dash of salt.
Spoon small dollops onto parchment paper that has been fitted to a cookie sheet. Only use parchment paper, as all others will cause meringues to stick.
Turn oven on to 150.
If your oven does not go that low, turn it to the lowest setting. You can turn your oven off for an hour, then back on for 5 minutes and then back off again for another hour to maintain a very low temp. and do this until cookies are done.
Cookies should be dried out, not baked and this process goes for maybe 2-3 hours.
If the meringues start to turn brown on the edges, your oven is too hot and you should turn off the heat and crack the oven door open.
Your cookies should turn out the color of honey, but a lighter shade, in an all over even color.
You need to monitor this by taking peeks in at them every half hour.
Meringues can be tempermental.
saw wolverine last night, it was awesome. but now i'm tired and cranky. also didn't have anything substantial to eat for breakfast (eggs and yogurt are gone, didn't want to eat farmer cheese at work). had two bananas though. chicken came out awesome. wish i brought some carrots though. this is definitely alot of work, glad i did a bunch of cooking last night.
somehow i am obsessed with dunkin donuts. all i want to do is go buy a dozen donuts and eat them all! seriously bad cravings. i went to sleep last night thinking what 12 would i pick. it's gonna be hard being good at the wedding and at paintball. maybe i should make some scd safe desserts to enjoy instead.