Tuesday, June 30, 2009

stuck in a loop

have UC > GI Bleed > Anemia > feel tired and crappy > gotta get stuff done > drink caffeine > wake up > aggravate IBS > feel crappy > tummy spazz > take hyomax > feel loopy > eat junk food > blood sugar spike > feel tired and crappy > drink more water > still feel tired > hate UC

dark in here

Today was the second day in a row i woke up with a massive headache. Not quite pre-sinus surgery migraine level, but close enough where I want to drill a hole in my skull to let the pain out. at least tylenol is effective when it finally kicks in.

i'm sooo exhausted today, and it just got harder to stay awake in here. Someone turned off all the lights. But then they keep flicking the one over my desk on and off randomly. I thought maybe we weren't moving around enough, and the building sensors thought we went home and turned off the lights, but the lightswitch raves just proves that someone is amusing themselves at our expense....





cut it out, the cheat!

Friday, June 26, 2009

Remy!

I just realized, this cute guy's name is Remy!
http://disney-clipart.com/Ratatouille/

Now I need to get a digital copy of Ratatouille to put on my ipod to watch during infusions... lol! I watched Nemo and Wall-E in the hospital, and tried to watch Nightmare Before Christmas, but the singing pissed me off. I know Remicade is derived from mouse proteins, but mouse, rat, close enough for me :) I guess I could get American Tale... i loved that movie as a kid

http://2.bp.blogspot.com/_9PxEL8_isxU/SeQDfOtrUrI/AAAAAAAABxM/Fbhh7YId3Cg/s400/fievel7iq.jpg

Also, need to add "Ben" to my ipod, to go along with "Rats" from Pearl Jam. Wonder what other mousey songs are wandering around out there?

Superdads of the animal kingdom

Great article on Disaboom about fatherhood in other species, very cool pics and photos. I knew about seahorses and penguins, but I had no idea there were so many others!!

http://www.disaboom.com/Blogs/hopefulnebula/archive/2009/06/18/8-great-animal-dads.aspx

Four baby rheas under their dad's wing

Baby Rheas in their father's feathers -- aren't they precious!!?

EDIT: awwwww, it's also TAKE YOUR DOG TO WORK DAY. and here is a great roundup of service dogs in action. When I grow up, I wanna train service dogs... ohhhh puppies!!!

Another puppy in training

I already have two "service cats" that give me kitty therapy when I need it. Just can't bring them to infusions because they'd probably bite the IV.

mermaid earings for next year



oh if only I had found these sooner!! Perfect for Mermaid Parade! better get crackin, i can decorate the hell out of myself next year with these

remicade part 2

yesterday's remicade infusion was completely uneventful. Hubs came along to see everything, read the PI and watch me get hooked up. There was another patient that came in toward the end for her infusion. She's been on Remicade since last July and has been having a great experience with it. She was very sweet and we chatted a bit. When I was done and they removed the IV, we held pressure on the vein for about 10-15 min, made sure the bleeding stopped, then i was on my way with no drama.

Doc says bloodwork looks good, and the tiredness may be due to being slightly anemic. They gave me some iron supplement (yaaay free samples!) and said it'll probably resolve itself now that the GI bleeding is stopped (thanks remicade!). I'll be tapering off the pred now, which is awesome, and scheduled my upcoming doc visits and next two infusions. Next month is my last of the 3 induction doses, then I'll be on the 8 week schedule. I go on sept 16th, and fly to FL on the 17th for my anniversary trip with the hubs. It's a really nice thing to look forward to.

I like that everything is finally scheduled too... I feel like I have a plan and I'm in control again. sure, i'll be in the doc office and the lab once a month, but it's better than losing entire days here and there randomly.

i'm totally wiped out today, i woulda loved to stay home. but i had a presentation (it went really well). got plans with sis tonight, mom and the fam tomorrow to see my uncle's stand up gig, but i think sunday I'll make a date with the bed, and the cat and my knitting :)

Thursday, June 25, 2009

awesome lolcats

CATS IN KNITTED SWEATERS!!!
(my cats are so lucky I just found out about this)

Wednesday, June 24, 2009

Rosebuds


GATHER ye rosebuds while ye may,
Old Time is still a-flying:
And this same flower that smiles to-day
To-morrow will be dying.

The glorious lamp of heaven, the sun,
The higher he 's a-getting,
The sooner will his race be run,
And nearer he 's to setting.





(i <3 bartleby)

rumbles return


this is totally my fault, but the monster is rumbling again. it's been virtually silent for two whole weeks, since the first dose of mouse juice. i'm thinking I overdid it a bit today with dairy and coffee... i had workplace coffee in the morning, then a medium DD coollatta with skim. I think I woke it up, but I also think I can make it go back to sleep by stopping coffee consumption again. no prob, I got this licked. Don't Panic! (where's my towel?)

I go for remicade in the morning anyway.

but coollatta was sooo good. I thought the nathans dogs and french fries and 20 pina coladas I had at the mermaid parade on saturday would disturb the beast, but apparently not. I got lucky. But note to self - moderate coffee consumption does not include giant coollattas at 2 pm.

ohhh, I hope they don't bring back the sobe one... i was so addicted to that one back in the day. I forgot all about it until now... mmmm greeeeeeen energy goodness

i'm so hyper

i had a customer meeting this morning, so i had some coffee. now i'm bouncing off the walls. i'd been using diet coke sparingly to get my caffeine fix (and not crash out at my desk) but whoa, this stuff is like rocket fuel. I haven't had coffee in like a month. like, i had a little weak coffee in the hospital, but the guys here make it extra extra strength. i went from too tired to function, to too hyper to function. i think i need to do a few laps around the building.

downside is i can totally feel my stomach is not happy with this situation, and i've been feverish all day, so now i'm just sweatier. so not the right day to be wearing this suit. I shoulda worn a skirt, but pants were just easier. i'll have to go home and play dress up to see which skirt could go with this suit jacket for next time. and next time i should have better shoes too... my current dress shoes just don't look right with skirts or are too fancy for work. i'm out of crackers, so hopefully this applesauce will calm the stomach down. i did bring bread for making sammiches for lunch, so I could go make some toast. but i don't want toast. I want crackers. maybe i'll just take advantage of the stomach ache and not eat today, so my weigh-in tonight will be less traumatic. This will be my first visit back to the dietician since SickFest '09, and i've been totally off track with eating. No more cheezeburgers for me for a bit.

funny, i was thinking this morning during my drive in how my new year's resolution was to go to the doctor less this year. I'm afraid that i'm a hypochondriac, and having a chronic condition that needs to be monitored is really time-consuming and annoying. instead, i got wicked crazy sick and now have to go once a month to the doc and once a month for labwork. but after everything that went down in May, I'm just happy it's only once a month and not once a week! that was nuts. but what's cool is though I go more often, the visits are faster (except for the infusions, but I should have enough reading material to survive now) and everyday life should be better (instead of awful symptoms stealing my life daily). Plus, I gotta spend at least $2000 on copays and shit this year because that's what I put in my FSA (wish it coulda been more!) How's that for cost-benefit analysis?

Update: There's only $632.20 left in the FSA account. I spend about $115/month on drug copays, so that's 5 months of drugs and a few office visit copays. I wonder why the max is $2000... i'm gonna so go over that :)

Monday, June 22, 2009

Dr Kao - dirtbag of the day

Dr. Gary D. Kao should have 600 radioactive seeds implanted erroneously, removed, re-implanted and then be left to suffer for almost a decade. How does this happen? How did it go on for so long without someone figuring it out?? It is absolutely horrifying. There's no way to make restitution to all the lives he and his staff affected. I swear, they pull up these stories just to scare us away from wanting a public non-profit healthcare system, but if this is the best our govt can do for our VETERANS, no thanks.

Courage



You can find the others, if you are brave.



You have all the power that you need, if you dare to look for it.



No one saves us but ourselves. No one can and no one may. We ourselves must walk the path.



The mouse that roars








Friday, June 19, 2009

Dinner tonite: Pork Chops au Poivre

more stealing from Eating Well... love this site!

Pork Chops au Poivre

Makes 4 servings

Ingredients

1 teaspoon coarsely ground black pepper
½ teaspoon salt, divided
4 4-ounce boneless pork chops, ½ inch thick, trimmed
3 tablespoons all-purpose flour / almond flour works fine
2 tablespoons extra-virgin olive oil
1 medium shallot, minced
½ cup brandy
¼ cup sour cream (nutrition facts use reduced-fat sour cream)

Instructions

1. Combine salt and pepper and rub the mixture onto both sides of each pork chop. Place flour in a shallow dish; dredge each chop in the flour, shaking off any excess.
2. Heat oil in a large skillet over medium-high heat. Add the chops, reduce heat to medium and cook until browned and just cooked through. Transfer to a plate and tent with foil to keep warm.
3. Reduce heat to medium-low. Add shallot to the pan and cook, stirring, until softened, about 1 minute. Add brandy and cook, stirring and scraping up any browned bits, until most of the liquid has evaporated. Remove from the heat; stir in sour cream and the remaining 1/4 teaspoon salt. Serve the pork chops with the sauce.

Nutrition Information

Per serving: 299 calories; 15 g fat (4 g sat, 8 g mono); 72 mg cholesterol; 3 g carbohydrate; 22 g protein; 0 g fiber; 342 mg sodium; 319 mg potassium.
0 Carbohydrate Servings
Exchanges: 2 lean meat, 1 1/2 fat

UP

omg, beautiful story... how many times is this movie going to make me cry?? If you haven't seen UP yet, go see it. I might go again sunday if I need a good cry. Boo on the hospice company that dropped the ball. It amazes me how careless some of those people can be, when they have a huge responsibility and know it -- I guess they get calloused from seeing everybody dying all the time. They should get different jobs.

But yay the parents for pushing forward and yay Pixar for making it happen.

Pixar grants girl's dying wish to see 'Up'

Mortality as a gift

i'm feeling so good today (aside from back spasms, etc). When I was depressed and miserable for so long with UC, I totally forgot how good life can feel. I'm having a great day, like the clouds have lifted. Remicade is a miracle.

Then there's the little voice... what happens when it stops working? what happens if i get lymphoma or some blood disorder? what if I go back to being sick?

there's only one answer for that: well, better take advantage of NOW then :)

Realizing that you are mortal and do not have infinite time to waste is pretty liberating, once you get past some of the sadness. What would you do if you knew the day you would die? Would you waste your time on pointless drama and energy vampires, or would you tell those folks to fuck off and go do what you want?

and that's why i have pink hair right now :)

Thursday, June 18, 2009

hyperchondria and cyberchondria

At bookclub, hubs used a term that I hadn't heard before. I was talking about how i was no longer going to google my weird symptoms because they just lead to crazytown, and he said, "oh, you've given up your cyberchondria." I didn't know there was a term for it, but apparently there is! Then in a weird synchronicity moment, i read "cyberchondria" in some article i was reading offline... funny, never heard it before this week.

I don't think it's necessarily a bad thing to be informed and do your own research. I'm a college educated lady with rather formidable critical thinking skills. I like to gather a bunch of resource materials and analyze them from different angles, whether we're talking literature, philsophy, medicine, knitting, or football. I'm a nerd - this is how i deal with the world.

the bad thing is that there is so much bad information out there on the internet. Some of it intentionally bad ("buy our crappy cure!"), some unintentional (self-proclaimed patient-experts), and some cover-your-ass language that makes reputable folks sound scarier than they probably intend (right-sided admonial pain means call a doc NOW!). and of course, everything hurts more, feels worse, starts flaring, seems scarier at 3:30 am. And what else is there to do at 3:30 am than google the thing that woke you up at 3:00 am?

But i felt like he said it kind of insultingly, and I feel like people use the term "hypochondria" as a put down sometimes. Like, "oh it's just you being a hypochondriac, you have nothing to really worry about." and I'm sure for some people that is true -- they take a little symptom, make a mountain out of a molehill (or a melanoma out of a mole), drive themselves and others nuts searching for diagnosis, spend way too much $$ and resources chasing something that doesn't exist. And sometimes if they do find something, it's not the answer they are looking for, or it doesn't account for everything, and the chase continues. I can see how that can be a negative.

However, when you are a child with a chronic condition, you are taught to pay more attention to your body than most folks. Then when you are raised in an family of hypochondriacs, you learn that behavior as well. So you can't just shrug it off as anxiety, you have proof that you are sick and fear that you are going to get sicker if you are not vigilant. It sucks that people who don't understand that background somehow feel entitled to write me off as a hypochondriac.

But I was heartened to recently read a article that the medical field is taking a different view of hypochondria. I do feel in the back of my mind that listing too many symptoms or reporting them too often just makes the doc go, "uh huh, yeah, whatever." I'm always afraid I'm getting a prescription for Placebon and not a real drug and that I'll sound like an idiot when the placebo-effect kicks in. I'm rather gullible and hate being deceived. Plus, I hate malingering. It bothers me when some people use an illness they don't have as an excuse. It undermines the rest of us that really have an issue, and makes people go, "uh huh, yeah, whatever" when we have to ask for special accomodation. I'd hate to be thought of as malingering, when I push so hard to function the best I can. recently, sometimes my best still kinda sucks.

I have to thank ChronicBabe for her great post and linking to the NYmag article. I'm totally going to use her 24-hr rule: basically, if a new symptom appears, give it 24 hrs before calling anyone. Exceptions will be made for barfing fire or things of that nature, of course.

anyway, back to my root. My grandmother is a hypochondriac, and passed that on to her kids, mostly her two eldest, my dad and my aunt M. My dad was always sick with something, looking for a reason for how he felt. As a kid, i was mean, and thought part of it was him trying to find an escape from the life he didn't like. He was discharged from the military due to allergies that were severe enough to interfere with his safety gear. He tried different crazy diets and supplements and constantly struggled with his weight.

He tried to get me tested for allergies and get me to start allergy shots as a kid, but I was needlephobic and stubborn. I got tested, but that was it. I had chronic bronchitis as a kid, probably from both parents smoking around me from day one. But it was 1979 and people were still dumb about second-hand smoke. Also, my hometown has one of the worst air qualities in the nation. So to help me not have crazy allergy and asthma attacks, we ripped out all the carpeting, i had no drapes, i couldn't have things that harbored dust mites, i had to wash my hands everytime i played with dogs or cats, I tried not to roll around in the grass or breathe in too much pollen. I had to be obsessed or else I would break out in hives, start wheezing and sneezing, and be generally miserable for hours until it was over. Nice childhood.

As I got older, I managed my allergies and just got used to being a little different from the rest of the kids. I took seldane-D until they took it off the market, then started claritin. It kept things under control. But hypochondria continued, because of possible drug interactions and side effects. I had to remember to be careful to never drink grapefruit juice and to remember to take my drugs every day, even when i was on camping trips. Kids today are way more medicated, but back then, I felt like a freak.

My dad's search for a diagnosis continued, eventually discovering hemochromatosis. Then he was obsessed with getting us tested to see if we were genetic carriers. Generally, the disorder doesn't affect women until after menopause, but he thought we should know. I was still needle/doctor phobic, and never intended to have kids anyway (at the wise old age of 15), and refused. For treatment, he had to go for regular bloodlettings. At this point, being a mean teenage girl, i totally thought he was exaggerating his illness, grasping at anything for an excuse. I resented him for not working harder to give us a better life. I was a crazy overachiever trying to escape a life i didn't like. I didn't want to live in the ghetto, living in fear of being violently attacked or my stuff stolen, with cheap knock-off sneakers and the fear of not being able to continue going to my private high school because we couldn't pay tuition. I blamed him. I figured he had a college degree and a good career -- if he pushed himself, we would have a better life. But he was happy going with the flow. I understand that now. I was kind of a bitch.

Quick side trip for Aunt M. She was always sick, mostly in the head. I half-heard horror stories and have a deep-seated fear of psychiatry as a result. She was manhandled by an ineffective psychiatric hospital system and broken. She's been on disability forever. Her husband got injured and tried to get on disability too. It's been a permanent vacation for them both, but they live in absolute poverty. I wondered as a kid if sometimes my dad wanted a break from being breadwinner too. My other aunt ended up schizo. I am still afraid i carry the same time bomb in my brain, but I think their environment had much to do with it (their dad could be considered emotionally abusive; their husbands were dirtbags).

Anyway, and so it went until I was safely away at college, and Dad got cancer. Whatever, people beat cancer every day. It was lung cancer, and since he was a smoker, it was a wake up call. He dutifully went through chemo, then radiation, then more chemo, but the tumor never got small enough to remove surgically. Then another tumor was discovered at the base of his tongue. More chemo and radiation, surgery was not an option. The tumor grew and grew and gradually took over. It was taking away his ability to breathe on his own. He would need a feeding tube and would never eat again. The night they put in the feeding tube, he went to sleep and died. He was 53.

He was so aware of his body, paid so much attention to his symptoms, and that little bastard cancer snuck up on him anyway. In women's health, they constantly scare-tactic you (check your breasts! get a pap! cancer is gonna get you!!!). Add that to my already anxious ocd self, and you wonder why I might over-google my disease and treatment options? I want to be ready. I accept that there are rare and serious side effects to Remicade. It's a bit like playing with fire -- with careful practice and respect for the element, you can be a gorgeous fire dancer, daring fire breather, experienced cook tending the camp's fire. But even the careful get burned and you have to be ready to repair yourself.

It's not healthy to obsess, I know, but it's not helpful to insult me for doing so either. Everything in life comes with a cost, I just want to make sure the cost is worth it and I get the best deal. So far, I am.

veggie snacks: baba ganouj

omg, i forgot about baba ganouj! i'm a total hummus addict. i'll probably pick some up at the store, but here's a recipe anyway just in case.

loving the Eating Well site today - i'm jazzed they have the full nutrition data and the ADA exchanges - score!

Baba Ganouj

Makes 12 servings, about 1/4 cup each

ACTIVE TIME: 20 minutes

TOTAL TIME: 40 minutes

EASE OF PREPARATION: Easy

2 medium eggplants (about 1 pound each)
4 cloves garlic, unpeeled
1/4 cup lemon juice
2 tablespoons tahini (see Note)
1 1/4 teaspoons salt
Extra-virgin olive oil for garnish
Ground sumac for garnish (see Note)

1. Preheat grill to high.
2. Prick eggplants all over with a fork. Thread garlic cloves onto a skewer. Grill the eggplants, turning occasionally, until charred and tender, 10 to 12 minutes. Grill the garlic, turning once, until charred and tender, 6 to 8 minutes.
3. Transfer the eggplants and garlic to a cutting board. When cool enough to handle, peel both. Transfer to a food processor. Add lemon juice, tahini and salt; process until almost smooth. Drizzle with oil and sprinkle with sumac, if desired.

NUTRITION INFORMATION: Per serving: 32 calories; 1 g fat (0 g sat, 1 g mono); 0 mg cholesterol; 5 g carbohydrate; 1 g protein; 2 g fiber; 245 mg sodium; 163 mg potassium.
0 Carbohydrate Servings
Exchanges: 1 vegetable

veggie snacks: bhindi masala

so according to SCD, okra is an illegal veg because it is mucilaginous. So i'm gonna try this and a variation using baby zukes instead. I think they will work, just in case the okra ends up being too "advanced" for me right now -- i'm trying to stay low residue, but damn i love me some okra


Bhindi Masala

1. Bhindi also known as Okra or Lady Finger 1/2 kg [or substitute Baby Zucchini]
2. Tomatoes 4 (medium)
3. Onions 2 (large)
4. Green chillies 2
5. Garam Masala 1 Table spoon
6. Ginger-garlic paste 1 tsp.
7. Red chilli powder 1 tsp.
8. Oil 4 Table spoons
9. Chopped Coriander leaves 1/2 bunch
10. Salt to taste
11. Bay leaves 1
12. Cloves 4

Instructions:
1. Dice the onions .
2. Dice the tomotoes
3. Chop the chillies and corainder.
4. Slice Bhindi ( Okra) in long pieces.
5. Heat the oil in pan and add the Bhindi pieces. Shallow Fry them. ( If you wish you can also deep fry the bhindi pieces)
6. Keep the fried bhindi aside.
7. 4. Heat 3 spoons of oil in a pan. Add the Bay leaves and cloves.
8. After a minute add onions and fry them until light brown.
9. Add the chopped green chilli pieces .
5. Add the ginger-garlic paste and fry for one minute.
6. Add Garam masala and fry for 2 minutes.
6. Add tomato pieces, red chilli powder and salt, cover the pan and cook for a few minutes until tomatoes become soft. Stir carefully if needed to avoid the mixture from sticking to the pan.
7. Add fried okra and mix slowly. Keep on heat for two more minutes and then remove the pan.
8. Sprinkle some more garam masala on top .
9. Garnish with coriander leaves and serve hot.

veggie snacks: cucumbers

usually not a fan of cucumbers, but i'm trying to find ways to sneak more veggies in my day. raw veggies are out, but i think this will work. Hopefully will have the energy this weekend to shop and cook this stuff up.

Tropical Cucumber Salad

Makes 4 servings, about 1 cup each

ACTIVE TIME: 15 minutes

TOTAL TIME: 15 minutes

EASE OF PREPARATION: Easy

3-5 teaspoons fish sauce (see Shopping Tip)
1 teaspoon freshly grated lime zest, plus more for garnish
2 tablespoons lime juice
1 tablespoon canola oil
2 teaspoons light brown sugar
1 teaspoon rice vinegar
1/4 teaspoon crushed red pepper
1 medium English cucumber, cut into 3/4-inch dice
1 avocado, cut into 3/4-inch dice
1 mango, cut into 3/4-inch dice (see Kitchen Tip)
1/4 cup chopped fresh cilantro

Whisk fish sauce to taste, lime zest, lime juice, oil, brown sugar, vinegar and crushed red pepper in a large bowl until combined. Add cucumber, avocado, mango and cilantro; gently toss to coat. Serve garnished with lime zest, if desired.


NUTRITION INFORMATION: Per serving: 169 calories; 11 g fat (1 g sat, 7 g mono); 0 mg cholesterol; 19 g carbohydrate; 3 g protein; 5 g fiber; 178 mg sodium; 342 mg potassium.

Nutrition bonus: Vitamin C (45% daily value), Vitamin A (15% dv).

1 Carbohydrate Serving

Exchanges: 1 vegetable, 1/2 fruit, 2 fat

veggie snacks: spiced carrots

Stealing recipes from eating well today...

Makes 6 servings, 1/2 cup each

ACTIVE TIME: 10 minutes

TOTAL TIME: 20 minutes

EASE OF PREPARATION: Easy

1 tablespoon extra-virgin olive oil
4 cloves garlic, minced
2 teaspoons paprika
1 teaspoon ground cumin
1 teaspoon ground coriander
3 cups sliced carrots (4 medium-large)
1 cup water
3 tablespoons lemon juice
1/8 teaspoon salt, or to taste
1/4 cup chopped fresh parsley

Heat oil in a large nonstick skillet over medium heat. Add garlic, paprika, cumin and coriander; cook, stirring, until fragrant but not browned, about 20 seconds. Add carrots, water, lemon juice and salt; bring to a simmer. Reduce heat to low, cover and cook until almost tender, 5 to 7 minutes. Uncover and simmer, stirring often, until the carrots are just tender and the liquid is syrupy, 2 to 4 minutes. Stir in parsley. Serve hot or at room temperature.


NUTRITION INFORMATION: Per serving: 51 calories; 3 g fat (0 g sat, 2 g mono); 0 mg cholesterol; 7 g carbohydrate; 1 g protein; 2 g fiber; 86 mg sodium.

Nutrition bonus: Vitamin A (210% daily value), Vitamin C (15% dv).

1/2 Carbohydrate Servings

Exchanges: 1 vegetable, 1/2 fat (mono)

Generics and Snake Oil

I read Sixuntilme on occasion since I have type 2 diabetes. sometimes type 1 and type 2 are so dissimilar, but there is alot of overlap. Also, since UC is an autoimmune condition, type 1 folks deal with the same "omg why does my body hurt itself?" frustration. So anyway, i really hate researching stuff online and finding crap like "just eat spinach and sunflower seeds and cure UC" or idiots online that play e-doctor but don't follow their doctor's orders and wonder why their meds aren't effective.

I read this post of hers today and thought it was awesome! totally found it by accident -- trying to google "diabetic snacks" and typed "diabetic snakes" instead:
After clicking around for a while, I had a good sense of how much snake oil is being peddled to people with diabetes.

And the thought made my stomach spin.

I can't help it. This shit makes me crazy! Don't market your false cures to me. Nothing I eat is going to cure me. ... Stop preying on people with diabetes.
This is the shit I wish the FDA would stop. It's total bullshit that things like "align" can market themselves as medication, mimicing the same DTC advertising of real pharmaceuticals. and not include any side effect information in their ads. Lipozene, enzyte, all of that crap. It's snake oil and should not be allowed to be marketed like that unless it is subject to listing all the side effects of that garbage. I hate how they have the brand name and then a made-up chemical name so it looks like real drugs. If they want to pretend to be pharmaceuticals, they should be subject to the same regulations.

People are generally science stupid, but even well-educated people can get a little cuckoo when dealing with serious illness or a condition they feel powerless over (ED, weight issues). It pisses me off that people will waste time with crap and self-diagnose and self-treat and not get the medication they need (myself included*). Not that we need to be everyone's mommy, but these snake-oil peddlers should not be able to operate their scam right out in the open and look legitimate because they have the same advertising as real meds.

While I'm on the soapbox, let me just say that the govt messing around with biologics pisses me off too. I do not trust generic drug manufacturers to have the same quality controls as Centcor and J&J. it would make me really fucking nervous to get some generic Remicade that is "equivalent" according to some lab drone that doesn't have to be injected with it. Biologics are sensitive drugs for serious conditions with serious side effects. This is NOT where they should cut corners to save cash. Stick to making generic shit that won't kill you or give you lymphoma when the generic manufacturer in India fucks up. See Ranbaxy: Thank god they weren't making anything important :rolleyes: If we can't trust them with generic claritin, do you want to trust them with manufacturing generic monoclonal chimeric antibodies?

and fuck, remember all the shit that went down with brand-name heparin??? That was an FDA failure to inspect Chinese factories, and the factories were messing with the chemicals in order to fool the quality control tests! They did that shit with FOOD (adding melamine to make it look higher in protein and killing people's pets and their OWN BABIES!). You're gonna trust them to make sensitive, expensive drugs? Don't come near me with that shit, I'd rather have under-treated ulcerative colitis.

And then, once these generic biologics are available, anyone with insurance issues is screwed. The govt/ insurance companies will force you to use the generic because it's cheaper. That's fine when we're talking generic metformin, generic lexapro, generic antihistamines, but doesn't it bother anyone that they're willing to give you generic chemotherapy? That is fucked.


*sigh* now i'm all incredible-hulked up... I need a unicorn chaser. I should see what else google has in store for "diabetic snakes" or take a trip to ICHC...


funny pictures of cats with captions
see more Lolcats and funny pictures

much better :)

* I'm not bashing SCD here. I don't consider trying SCD to be that bad of a thing. I consulted my docs and kept taking the meds i was on (mesalamine). I tried Lialda so I could take 4 pills a day instead of 12 (didn't work out). My disease just progressed from mild to moderate/severe at the same time i made dietary changes. If it had not progressed, diet and asacol may have been enough. I still plan to use some of the lessons from SCD going forward - whole foods, limited processing, cooked fruits and veg, easier to digest things. Because they make sense and seem to work. Alot of these ideas are also in this great slideshow here by Dr. McDermott -- his presentation is about managing IBS so it was less likely to trigger IBD symptoms (for those of us lucky ones that get to have both). But I can't fanatically adhere to it so I can't use it strictly. Also, so much of SCD online is geared toward autism instead of gastro disorders, and though there is a mind-gut connection, I think SCD would only be part of the treatment plan and not the whole answer.

Tuesday, June 16, 2009

so so tired

i am so exhausted. i'm trying to take it easy, but there is so much to do. i'll prob go home early today, which sucks, because i'm trying to hang on to my sicktime, but this is ridiculous. i feel like i haven't slept in days.

uc symptoms have definitely improved, a little setback today, but no spazzies. i'm just so incredibly tired. probably because i'm not really eating that great. but now i have food, and i just have to make myself cook it and eat it. that'll help me feel better. the pred is prob causing crazy blood sugar, which is making me feel crappy. i have to push and eat better and not just froot loops because it's easy. i need protein dammit :)

but omg, the back pain spasms. i got in the car this morning, and thought my spine was trying to escape. it's hit a few times since i got here. no pain, then searing omgkillmenow pain for a good few seconds. here's hoping tylenol helps. i'm guessing it's just part of pms fun, since everything likes to happen together. maybe that's part of why i am soo tired.

it's physical and mental too, so I need to just go home and check out for a few hours. if it were just physical, i could lay down and get mental stuff done. if it were just mental, i would just be my silly goofball self and have a little trouble with the problem solving today. but no, it's both, and if i fight it, it'll probably just continue into tomorrow.

i've got bloodwork scheduled for tomorrow, so if there's any funny business going on in my bloodstream, we'll catch it. but right now i think it's just poor diet and the fact that my body is trying to rebuild 18 inches of intestine now that the TNF is smacked down by the Remicade. Like road work -- it's finally not raining so maybe these long-needed repairs can get done. but in the meantime, it's gonna make it hard to get anywhere.

Monday, June 15, 2009

Sisterversary

2004 -- Boy From Oz

...And I'm STILL hotter than you.

It all started back in 2004. My sister and I got tickets to see Hugh Jackman in The Boy from Oz and decided to make a day out of it. We went into the city in the morning and went to Madam Tussauds wax museum. Then over to Jekyll and Hyde's for dinner, where I got an awesome tiki mug. Then to the show, which was awesome, and we got to see Hugh Jackman get naked. After the show, we waited outside the stage door, and got to see Hugh Jackman in person! For like a split second, but wow, what a smile!

2005 - Sisterversary established



A year later, my sister sent me flowers and announced the establishing of our sister anniversary -- our sisterversary. it celebrates that we are sisters and we are awesome and make a great couple. Let no one dare interfere with the sister bond, lest they be killed and eaten! (ok, that killing part is all me, but she'd totally help me if i asked her to.)

I feel lucky to be so close to my sister, and realize some people just don't get it. We were close as kids, but grew apart over the years due to misunderstandings and misinterpretations. After my father died, we finally compared notes and cleared the air. There is no one more important to me than my sister. I wasted the time I had with my dad and lost him. I wasted many moments that I could've had with my sister, and refuse to lose any more. We do lots of stuff together, but I think it's important that we have the sisterversary to make sure there is one specific day where that relationship is honored and takes priority. Traditionally it is March 27th, but sometimes gets wiggled around for good reason, mutually agreed upon of course.

2006 - Erie NIN


We moved up the sisterversary date and did a crazy drive across PA. It looked way closer on the map. Once in Erie, it was freakin cold, and NIN did not allow people in for soundcheck. We hung out in the Burger King and with these other fans, but it was a loooooong day. Show was good -- the arena was so small! it felt like being in a high school gym. We had GA tickets, but don't really like crowds, so we hung back by the sound board and enjoyed the show. We were definitely the hottest girls there.


2007 - South Carolina

[pic goes here]

I planned my trip to New Orleans to be the week after Mardi Gras, so we had to move up the sisterversary this year. So we drove down to South Carolina. The SC drive became part of a new sister tradition. Originally, we were supposed to fly, but Continental screwed us over and cancelled our flight right before takeoff. They offered to fly us to Detroit instead, then SC in the morning. No fucking way, we said. We'll end up stranded in Detroit and waste our vacation days. The sisters pondered a moment, then declared, "Whatever, let's just drive!" And so they did. I think we kind of hated each other after enduring that long drive back, but we got over it, and did the SC drive again and again.

2008 - Crybaby



Chickie was so afraid someone would ruin the surprise, and my mom almost did! but luckily, i had no idea what show we were going to -- all i knew was that we were going to NYC. The Crybaby musical was pretty interesting and lots of fun, though the actors playing Crybaby and Mrs. Vernon-Williams had like the most giant distracting moles ever. And Hatchetface didn't looked messedupity enough. But I loved how they made Lenora completely insane... reminded me of Squeaky Fromme in Assassins a bit.


2009 - Maryland NIN




With so much going on back in March, we got these tickets and decided to celebrate a late sisterversary this year. I missed the NJ show due to work, so we drove to this one instead. OMG, the Merriweather Post Pavillion blows the PNC arts center out of the water. I'd rather drive to MD than ever go to holmdel again. It amazes me how stuff in other states is so cool, and stuff in NJ sucks. And when there is something good in NJ, it gets ruined. People in MD were so cool, they didn't need huge security and crowd control. Everytime jersey people go to a show, 10-25% act like total asses and need to get the cops involved. Must be something in the water.

We're also getting a second act to the sisterversary this year -- Joe's Crab Shack. I am obsessed, but there are none near us. We were going to hit one in MD, but it was almost an hour out of the way. Our original sisterversary idea this year was to go shopping in Lawrenceville and go to JCS there, so we're just going to pick a random weekend and go do that too.

2010 - Planning

Sisterversary next year will probably be more low-key due to other milestones that year -- my mom's 60th birthday bash and my sister's 30th b-day bash. We always find something cool to do though. Some things in Jersey suck, but some are awesome too, and you can't beat the location. Close enough to do stuff in NYC without having to be there longer than you want to.



2004 -- Boy From Oz
2005 - Sisterversary established
2006 - Erie NIN
2007 - South Carolina
2008 - Crybaby
2009 - Maryland NIN

Friday, June 12, 2009

Cure Lyrics

and just 'cause i'm on a song lyric quote kick, here's some words from the Cure that say it better than i ever could :)

it's a perfect day for getting wild
forgetting all your worries
life
and everything that makes you cry
let's get happy!
it's a perfect day for dreams come true
for thinking big
and doing anything you want to do
let's get happy!
...
kick out the gloom
kick out the blues
tear out the pages with all the bad news
pull down the mirrors and pull down the walls
tear up the stairs and tear up the floors
oh just burn down the house!
burn down the street!
turn everything red and the beat is complete
with the sound of your world
going up in fire
it's a perfect day to throw back your head
and kiss it all goodbye
(Doing the Unstuck)

I've been looking so long at these pictures of you
That I almost believe that they're real
I've been living so long with my pictures of you
That I almost believe that the pictures are
All I can feel
(Pictures of You)

The mouth that knows
The secret you
Always you
A smile to hide the fear away
Oh smear this man across the walls
Like strawberries and cream
It's the only way (It's the only way) to be
(Push)

There is no-one left in the world
That I can hold onto
(Trust)

on that bleak track
(see the sun is gone again)
the tears were pouring down her face
she was crying and crying for a girl
who died so many years before...
(Charlotte Sometimes)

i'm running out of time i'm out of step and
closing down and never sleep for wanting hours
the empty hours of greed
(closedown)

Until later...doesn't always come.
...
But how many times can I walk away and wish "If only..."
But how many times can I talk this way and wish "If only..."
Keep on making the same mistake
Keep on aching the same heartbreak
I wish "If only..."

But "If only...."
Is a wish too late...
(Cut Here)

So it's all come back round to breaking apart again
Breaking apart like I'm made up of glass again
Making it up behind my back again
Holding my breath for the fear of sleep again
Holding it up behind my head again
Cut in deep to the heart of the bone again
Round and round and round
And it's coming apart again
Over and over and over
(Disintegration)

if only you'd never speak to me
the way that you do
if only you'd never speak like that
it's like listening to
a breaking heart
a falling sky
fire go out and friendship die
(Cut)

"this dream always ends" I said
"this feeling always goes
The time always comes to slip away"
"this wave always breaks" I said
"this sun always sets again
And these flowers will always fade"
(Bloodflowers)

NIN songs I wish they played

19 songs wasn't enough, and I knew Hurt would be the "encore." I've seen them a few times, so some of these I've already seen live, but they just fit this moment of my life.

i was swimming in the hate now i crawl on the ground.
and everything i never liked about you is kind of seeping into me.
i try to laugh about it now but isn't it funny how everything works out.
"i guess the joke's on me," she said.
...
i used to have something inside.
now just this hole it's open wide.
used to want it all.
i used to be somebody.
(Down in It)

I don't know what I am I don't know where I've been
Human junk just words and so much skin
Stick my hands through the cage of this endless routine
Just some flesh caught in this big broken machine
(Happiness in Slavery)

he flexed his muscles,
to keep his flock of sheep in line,
he made a virus,
that would kill off all the swine,
his perfect kingdom,
of killing, suffering and pain.
demands devotion,
atrocities done in his name.
(Heresy)

don't you tell me how I feel
you don't know just how I feel
I stay inside my bed
I have lived so many lives all in my head
don't tell me that you care
there really isn't anything now, is there?
(I do not want this)

I am the bullet in the gun
and I control you
I am the truth from which you run
and I control you
I am the silencing machine
and I control you
I am the end of all your dreams
and I control you
(Mr. Self Destruct)

The echoes in my eyes
Of all they used to see
Burning down the world
The ashes and debris
And all that's left of me
(Non-Entity)

Theres nothing left for me to hide
I lost my ignorance, security, and pride
I'm all alone in this world you must dispise
I believed your promises, your promises and lies!
...
My head is filled with disease
My skin is begging you please
I'm on my hands and knees
I want so much to believe
(Terrible Lie)

If I could fix myself I'd...
but it's too late for me
(The Fragile)

the clouds will part and the sky cracks open
and God himself will reach his fucking arm through
just to push you down
just to hold you down
(The Wretched)

Upward Spiral

So for my infusions, i decided to make a playlist called "upward spiral" -- using the itunes Genius, I based it off my fav Cure song, "doing the unstuck" from Show.

[list goes here]

Then I took out some stuff, because they were either the wrong mood, or annoying.

Then I added some stuff, because at 3 hrs a pop, I need enough room to skip and not repeat things until I get sick of them

Thievery Corporation
Depeche Mode
Tori Amos
Smiths
NIN songs I've seen live
Cure songs I've seen live


I have to wait to get paid so I can buy new music, discoveries from Pandora mostly:

Street Sweeper Social Club (NIN/JA tour)
others

quick thoughts on the morning after my first infusion

my system seems to have quieted down. no gurgling or cramping or that vague feeling of something wrong. there is already a lot less blood, but let's see if it lasts. I've had random good days before.

i have a gnarly bruise from the infusion. the iv was fine until they took it out. they slapped on some gauze and said i was good to go. as i packed up my things, i felt something wet, and noticed blood everywhere. it's definitely the worst bruise I've had, worse than the ION 07 reball shot. pics later :) then again, my skin is so pale, it looks worse than it would on a normal person.

i started coughing on Friday and it's gotten pretty nasty. I had a sore throat, figured it was dry mouth/post nasal drip. Started using the humidifier in the bubble. folks were smoking around me at the field and there was a ton of smoke from the final battle -- that probably didn't help. i got a little wheezy and hit up the advair, but didn't go total rescue inhaler. tuesday at the concert it started getting "productive" and just sounded BAD. people were moving away from me. sis thought it was funny and made swine flu jokes. but this morning i think i'm kicking out all that stuff in my lungs and i'm feeling better, it just hurts when it gets going, it's one of those nasty deep bronchial coughs.

my whole mouth felt like it was pizza burned, so i got some biotene. that stuff tastes nast but seems to be helping. also helping is if i could stop chewing my tongue. what a weird nervous habit. blarg. but it is better today than yesterday. earlier this week it was hard to eat because my mouth hurt so bad. i was like great, sometimes i have no appetite, sometimes i'm just super nauseous, and now sometimes it just hurts to eat. yet i'm not losing weight. i own the most stubborn fat cells on the planet.

woke up with some crappy clammy feeling and nausea, but it was 7 am, not 3:30. woo hoo! i did overdo it last night with cleaning because i had 2 helpers and wanted to get it done before they left. maybe that was part of why i slept through the night and/or why i feel a little cruddy this morning. we'll see what tomorrow brings.

i have some pretty rotten back pain today, but i think it's from lifting too much yesterday, because i am a stubborn idiot. house looks great though and smells much better.

i got soooo freaking tired at work yesterday. i felt fine after the infusion, did some quick food shopping, grabbed lunch, and went to work. but at 4 pm, it was like a bodyslam from the sandman. but i loaded up on cookies and diet coke and made it home. i'm kinda feeling that way this morning, i'm awake, but i feel ready to go back to sleep. if it gets too bad, i'll go home. or take a nap. my biggest fear is getting it a stupid car accident from falling asleep on the road. 287 is a death highway on a good day. it's like the nj highway system is out to get you everytime you get behind the wheel. i'm not going to survive all this and let some dumbass in a lexus take me out :) besides, i don't want anything to happen to my beloved truck. i should get an oil change today, she deserves it

Thursday, June 11, 2009

remicade first dose

synchronicity

With the NIN show last night and the Remicade infusion starting up tomorrow, I noticed something funny, strange and oddly reassuring.

This is the cover to "closer to god" which had some remixes and singles off the downward spiral. It's what I always think is the cover to the album itself, because I think it's the one my sister had laying about the most.






Today, I got my welcome packet from Centcor, and finally saw the Remicade marketing logo




Freakin weird, right? So after all these years of a downward spiral, could I be entering an upward spiral? Here's hoping.

The coolest thing in the remicade packet is this photo from a patient at week 0, week 8, and week 54 showing the transformation of the colon from ravaged by UC to a almost totally normal appearance. It makes me look forward to my next flex sig... almost.

Tuesday, June 9, 2009

NIN: Louder than Pain

nothing can stop me now/ cause I don't care anymore
(Piggy)

I'm so glad I pushed myself and went to the show on Tuesday. Part of me thought I should stay home and be safe and be sick. I didn't want to make myself sicker by overdoing things.

I see you left a mark/ Up and down my skin/ I don't know where I end/ And where you begin
(Discipline)

I jump from every rooftop/ So high so far to fall/ I feel a million miles away/ I don't feel any thing at all
(1,000,000)

You train us how to act/ You keep the fear intact/The imminent attack/Everything is right on track
(Letting You)

But it was a once in a lifetime opportunity, and one of the greatest days of my life. I took a ton of immodium and had my bag of supplies with me. The staff at the venue were nice and accomodating. I only had one near-incident, and luckily the music moved me out of my sick body and into an amazing space instead.

did you think i wouldn't recognize this compromise./am i just too stupid to realize.
(Sin)

don't like the look of it/ don't like the taste of it/ don't like the smell of it/ I want to watch it come down.
(March of the Pigs)

though it all looks different now,/ i know it's still the same./ everywhere i look you're all i see./ just a fading fucking reminder of who i used to be.
(Something I can never have)

My voice just echoes off these walls
(Echoplex)

It was a great set, every song was perfect. and there were moments that just summed up exactly how i was feeling and expressing it within a crowd made me feel less isolated and alone. It was very cathartic. It was like a spiritual revival.

the me that you know, he doesn't come around much, that part of me, isn't here anymore.
...
it won't give up, it wants me dead, Goddamn this noise, inside my head.
(The Becoming)

Something inside of me/ Has opened up its eyes/ Why did you put it there?/ Did you not realize
Something inside of me/ It screams the loudest sound/ Sometimes I think I could
I'm gonna burn this whole world down
I never was a part of you
(Burn)

covered in hope and vaseline/ still cannot fix this broken machine/ watching the hole it used to be mine/ just watching it burn in my steady systematic decline/ of the trust i will betray
give it to me i throw it away/ after everything i've done i hate myself for what i've become
i tried
i gave up
(Gave Up)

On every song, it was like he rips out your soul and shows it to you. and there is clarity. and there is a feeling of control replacing desperation. recognizing the feeling, expressing the feeling, gives control over the feeling, even though you can't get relief.

What if everything around you/ Isn't quite as it seems?/ What if all the world you used to know/ Is an elaborate dream?
(Right Where it Belongs)

all I've undergone/ I will keep on
(The Way Out is Through)

Depression is paralyzing. Chronic pain is demoralizing, you feel helpless and out of control. Anger is a gift. Wresting control is power. Sometimes you need to get angry and get up. You have to work to get yourself happiness, even though it hurts too. I'm realizing that having a purpose makes it easier to endure the pain. Pain without a reason hurts the most.

No need for me to stay/ The last thing left I just threw it away/ I put my faith in God and my trust in you/ Now there's nothing more fucked up I could do
(Wish)

All a part of this great nation/ I got my fist I got my plan I got survivalism
(Survivalism)

Someone take these dreams away/ That point me to another day
(Dead Souls)

Anger, resignation, betrayal, sadness, resolve -- the whole spectrum of emotions just pulled out by the music and poured out into the air. Soaking it in, experiencing it, expressing it, relieving the pressure that builds up from stuffing it deep inside. like a good cry, but a cry of strength. A vow to move forward and change. Take control of suffering and end it. and if I can't end it, fight it until i die.

So naïve/ I keep holding on to what I wanna believe/ I can see/ But I keep holding on and on and on and on
(The Hand that Feeds)

I'd rather die than give you control.
(Head like a Hole)

Full of broken thoughts/ I cannot repair/ Beneath the stains of time/ the feelings disappears/ You are someone else/ I am still right here
...
If I could start again/ a million miles away/ I would keep myself
I would find a way...
(Hurt)

Monday, June 8, 2009

this week

Not to be a bummer, but i had a rough morning -- woke up at 3 am, yakked, was still crazy nauseous all morning, but my anti-nausea meds were at the NON 24 hrs walgreens (derrrrr) so I couldn't get at them. hubby was sick too, so it might've been something we ate. i got him feeling better though before i stuck him on the plane -- made him eat cheerios while we packed and had a nice chat on the ride to the airport. he was smiling when he left.

I got the meds now, but i'm waiting for them to work.

On the plus side, drive to the airport was smooth. I got back home with 2 hrs to kill before doc/walgreens opened, so I did some gardening and facebooking and snuggling with kittens, then got my PPD test placed at the doctor and picked up my meds at walgreens and came here to work. I'm exhausted :) oh! And I had the most gigantic bowl of fruit loops for breakfast, mmmmm. Rice Dream FTW!!!

So I have work today, go up to my sister's tonight, drive to NIN concert tomorrow, get my tb test checked Wednesday morning, start remicade hopefully on Thursday and hopefully go out dancing Friday night. I have a jam-packed week!

Tuesday, June 2, 2009

miss you, Dad

Hey Dad,

I wish you were still around. Things really suck, even 7 years after. And you've been on my mind alot lately. I don't have a yard, but I planted tomatoes. I check on them every day and they just started flowering. I totally bought the wrong kind, because i wanted cherry tomatoes and apparently these are going to be normal sized tomatoes, but hey, tomatoes are awesome. I just hope i got a little of your gardening skill in my genes.

We moved mom to her new place and since I can't really do much else to help, I just picked up the tab here and there. Now I see how easy it is for things to add up fast, and how hard it is to say no, and how completely impossible it is to wonder if something was a necessary expense or not without feeling like a total ass. So keeps it between us, ok? :)

Next week I should start my remicade infusions, and it really sucks how health problems can just take over and you still need to get stuff done. You don't want to worry, or make anyone else worry, but you're not sure what to say either. And you don't want to ask for help, because you don't want to impose, but it's hard to get anything done otherwise. You kept all that cancer stuff to yourself, or maybe you told my mom and sis, but you never really told me everything you had to deal with. The medical stuff I go do is stressful, I can only imagine how stressful yours must've been. I was busy at school and I figured you were busy doing your thing too -- I wish I had been smarter than that.

I wish I wasn't a little jerk back then, and had been there for you somehow. We could've played games during your chemo, or I could've hung out with you after. I just didn't want to impose. I was so disappointed that day we went to the AMNH with mom and sis, but you were too sick to go. I was so focused on my own stupid little world, and kinda thought you didn't want me bothering you. It's all so silly now.

If it were nowadays, we'd probably be texting or chatting over facebook. I always thought you'd get better, and there would be a later. I really lost alot. and how weird am I realizing this now?