blanket girls

i hate my mother.

i was trying to ask her which hospital we're going to now that we've quit scott and white, and she thinks its best if we just take whichever hospital is most convenient- not the hospital that has the best resources or the most competent doctors, but just whatever quack-factory is within reasonable driving distance. she seems to believe that all that is needed to make progress towards a diagnosis is nagging. "if we keep harassing them, eventually they'll help." no matter that they are incapable of helping, nevermind that they are large corporations who don't give a shit about one human life, especially if that human doesn't have adequate insurance. she just doesn't comprehend that these are not reasonable individuals and they have the ability to ignore and deny care to whomever they please, no matter how much nagging is involved.

she reminded me that she is, in fact, older than me and has had more experience with getting medical care, citing the example of how she forced doctors to treat my great-granddad. she's completely ignoring the fact that my great granddad, while under her care, was subjected to several medical tests and procedures gone awry which caused him more suffering than if he'd just stayed home. not to mention that my great granddad DIED from complications after nag-induced surgery. granted, he was an old man and nearing his time anyway, but i still don't believe that nagging and shaming incompetent doctors into helping you makes them any more competent, and i certainly don't believe that nagging and shaming competent-yet-unwilling doctors into helping you is going to get you any sort of quality care.

its bad enough that the doctors ignore me, but my own mother has also been ignoring my opinions of the doctors. i have been trying to tell her since my very first sppointment in march when Dr. Shenanigans confused a virus with a bacteria that scott and white is a waste of time. my mother maintains that as long as she's having to make the appointments and drive me to them then she'll pick the doctors. she, like the doctors themselves, refuses to allow for the possibility that i might know something she doesn't. that if i say a doctor is shit, then they might actually be shit, that at the end of the day its me, not her, not them, who has to live in this body and it is me and only me, who knows everything about this illness. i don't care how old she is or how many years of school they went through, i am still the ultimate authority on me.

my mother is turning into one of them, and the worst part is that she is the only one helping me. she is my only ally, but she's a double-agent. i am completely alone in this; walking into battle crippled and utterly helpless with no one to back me up. and no one is coming.

lord kangaroo overalls

The sickie saga takes a sharp turn…

First, I should update you about the rheumatologist appointment. The bloodwork just confirmed what he found out from the physical exam: I don't have any auto-immune disorders, nor do I have any joint disease. I did, however, have a slight vitamin D deficiency. He's having me take 1000 units of vitamin D a day for two weeks to get it back to where it should be. At last! The bone pain is diagnosed! Now we only have two-thousand four-hundred ninety-nine other symptoms to go. He also prescribed me something for chronic pain, but I'm not sure I want to take it because I've been having such bizarre side-effects to other medications and its contraindicated for people with liver problems. But I'm almost out of narcotics, so I might give it a try anyway. 

Today, I had an appointment with dr. pruett. Egads! She had me wait for nearly 2 hours to tell me that I don't have porphyria and she doesn't think there's anything further she can help me with. She had the nerve to try to refer me to psychiatry. I asked her if I could get a referral to endocrinology since there's one right across the hall from her offices and the next nearest one is in Houston and she said "I don't think that would help you because we've already tested your thyroid. What do you think an endocrinologist could do for you?" I told her I was a little concerned I might have polycystic ovary syndrome because I seem to have similar symptoms to what my friends with PCOS have and she told me that I should see ob/gyn because PCOS is caused by polycystic ovaries and not by a thyroid. At this point it became apparent that she believed the entire endocrine system consisted of one thyroid and that her info on PCOS is over a decade out of date.

PCOS is called polycystic ovary syndrome because when it was first being discovered all the women found to have the characterizing symptoms also had polycystic ovaries which the researchers believed to be causing the symptoms. Later, however, they discovered many many many women who have all the symptoms for PCOS but no cysts and also women with cysts who have no symptoms. This led them to search for other causes. Research is still being conducted, but now PCOS is believed to be caused by high insulin levels or damage to the pituitary gland which signals the body to produce excess "male" hormones called androgens. It is diagnosed primarily based on a patient's symptoms and by blood tests for testosterone and other hormones. (if you don't believe me check out the merck article: http://www.merck.com/mmpe/sec18/ch244/ch244e.html or google "Polycystic Ovary Syndrome")

of course, since I am but a lowly, uneducated Medicaid patient and she is an omnipotent doctor, she refused to believe that I could possibly know more about any medical condition than her and eventually I let it drop after I realized she was not joking, she really didn't even know what an endocrine system was. Again, Egads!! Then I got the hell out of there and swore never to return to scott & white, land of the freakishly ignorant doctors and medical slapstick routines. But dr. pruett did earn herself a demeaning nickname: I christen her Dr. Idiocy. I think that's entirely appropriate. 

So, now I am adrift once again: without a diagnosis, without a prognosis, just with the urging from my ob/gyn to seek the help of the fabled endocrinologist. Its hard starting over, but I certainly can't go back to a hospital who's every doctor seems to have missed their calling as a rodeo clown. let's take a moment to remember for the amusement and as a public service announcement: Dr. Shenanigans (Dr. Xuan): told me my bloodwork was normal when I had a whacked out liver enzyme (found later to be due to hepatic granulomata) and an elevated ANA- also sent me to an opthamologist for neurological symptoms, Dr. Cunty McBitch (Dr. McBrayer): tried to tell me I had chlamydia even after I tested negative for chlamydia and the guy I was with tested negative as well, then tried to say I had "high risk sexual behavior" when she hadn't even interviewed me about my sexual behavior, wrote on my records that I weighed 191 pounds, had me in the hospital for an entire week and refused to even attempt to diagnose me, refused to give me any referrals when I was discharged, and shouted at me to walk when my legs were for all intents and purposes paralyzed, claiming that i would develop bedsores. (She was really obsessed with bedsores and I almost named her Dr. Bedsores, but her horrid bedside manner ultimately earned her the pseudonym Cunty McBtich), Dr. Interrupter (Dr. Severson): did everything short of sticking her fingers in her ears and chanting "na na na na na" everytime I tried to tell her my symptoms, this included shouting out random diagnoses like an impatient child playing charades, handing out referrals before the appointment was even halfway through or doing her signature move- interrupting and making it clear that she didn't even believe I had those symptoms. She was actually the best of the group, and finally we come back to Dr. Idiocy (Dr. Pruett) who didn't even know what an endocrine system was and probably couldn't pass 6^th grade science, but still believes herself to be the most intelligent being on the planet.

Doctors need to get over themselves. Each doctor believes him- or herself to be the end-all and be-all of medical knowledge: "if I can't find your diagnosis in a matter of days then no one else can either and therefore, there is nothing wrong with you". I am sick of this attitude!!! You are not superhuman and no one expects you to be, if you don't know then have the guts to admit you don't know and allow for the possibility that someone else, possessing resources or knowledge other than your own might be able to help. And stop acting morally superior because you save people's lives. As far as I can tell, you destroy just as many (if not more) lives as you save… and for pity's sake please keep yourselves updated on new medical discoveries and practices. You owe it to your patients and to yourselves to make sure that you always have the most current knowledge and treatment options regardless of whether your department head thinks its worth sending you to a weekend seminar for. One of the beautiful and exciting things about science is that its always changing and growing, but we as scientists must also change and grow with it to avoid becoming obsolete or completely embarrassing ourselves (*ehem* Dr. Idiocy). Egads!!!!!!

i am my own cuthbert

things just get worser and worser...

i had a dream that everyone i know died. i hate my dreams and i hate the awful sick feeling i get when bad things are coming. when my grandmother didn't show up to help with the animals last week, i hate that i knew she wasn't ever coming home. i didn't want to know.

she wasn't old. she had a lot of years, but she was not old. and she wasn't just my grandmother, she was my friend. i stayed at her house every weekend in middle school and she was the maid of honor at my wedding. we were all going to go to the beach when i get well. she wasn't a relic in a wheelchair in a home, she was alive. and we loved her. we still need her.

out of all the people in the world, why did it have to be her? and furthermore, why couldn't it have been me? i'm just a little ball of wasted potential and hurt, barely alive as it is. i don't know where she's gone, either. if i was still a christian i could tell you she went to heaven, but i don't know anymore if heaven is real or just a scoop of white foma we use to comfort ourselves.

i had a dream that everyone i know died, and i'm still waiting to wake up...

ghostie

hundred-and-nineteenth Calypso

"Where's my good old gang done gone?"
I heard a sad man say.
I whispered in that sad man's ear,
"Your gang's done gone away."

--Kurt Vonnegut

a boat named switzerland

just a few notes:

i was watching matlock today and during one scene he and his assistants are sitting at his table having a discussion while he makes a sandwich. that's not unusual, but what was unusual was what kind of sandwich he was making. he kept scooping more and more relish on white bread and then he added hamburger dill chips and the long pickle slices- like vlassic stackers. there was a jar of peanut butter on the table, so i guess that was going on it, too. what a strange old man.

everybody left and i'm supposed to be taking care of the animals. problem is, i'm pretty much crippled. i got a pinched nerve in my hip last night and then my legs just gave out and i fell on the same hip *three times* while attempting to feed the pets. fuckity fucking fuckers! now its all swollen and my legs still keep giving out. my lungs haven't been behaving either- they keep refusing to inflate for some reason. i told my parents about 4 times i'm in no shape to be looking after their barnyard but they left me in charge anyway. now i don't know what to do. i don't want to collapse outside and get heat exhaustion (i can't be in the sun for more than 10 minutes) but i don't want the animals to starve either. why couldn't those bastards just have hired a pet sitter or something? told you my parents were assholes, and if i didn't, i'm telling you now. looks like this is a job for oxycodone! too bad there's only 3 left...

...but hey! ryan is here! i don't know if he can help feed the pets, i'm already having him clean the house and help me with my pets. seems really unfair to dump all that responsibility on him just cause my jerk parents dumped it on me. not to mention that he's here working, not on vacation, so he's already gone for 8 or 9 hours a day. at least if i do collapse and die of exposure there'll be someone to call the morgue before i start getting all rotted and discolored and bloated in the sun too bad. like a day-old dead orange roughy. flies will probably lay their eggs in my nose, but that's okay, i like parasites.

the Pee Quest didn't go so great. the pee jug they gave me wasn't big enough so it was only a 20 hour urine collect. means i'll probably have to do it again. but in my research, i found a simple test for acute porphyrias. all you have to do is leave some urine in the sun and see if it changes funny colors. its not fool-proof, but it'll give me a better idea of where i stand since it looks like i might have to wait until the end of the month when my parents get home to do another Pee Quest. the lab said it would be "too late" by then and that's why they wanted me to do it now. too late?! too late for what? am i gonna die in 3 weeks that i don't know about?! or does the test only work on august pee? geez, these people are stupid. even if dr. pruett turns out to know her stuff, i still might not be able to get anything done because her staff are all 'tards. that should be scott and white's motto: bringing you the best doctors and slapstick comedians since 1952.

walk into my vicious wine bucket

i know, i said that i would post a blog about the diagnostic center on friday and today is saturday, but my dad wanted to be an asshole and make my mom take me with her after the appointment to the uhaul place to get a trailer to move my brother's stuff to college. i can't really sit up for more than 20 minutes without being in a fucking lot of pain right now, and i was forced to sit up for 2 hours at the diagnostics center and then for 2 hours at the uhaul place and for 3 more hours in the car. so i was in a fucking lot of pain and unable to walk unassisted when i got back last night. and here's the fun part: my dad has a whole nother day to get the uhaul before they leave so it was totally unecessary to send my mom yesterday, she could've done it today! everybody call him a douchebag and i'll stop whining and move on.

my first thoughts about the appointment were positive. dr. pruett (notice i'm not giving her a demeaning pseudonym) was nice; she listened, she didn't accuse me of anything, she didn't interrupt, she asked questions, and she spent one and a half hours just going over my medical history, my chart, and my notes and asking other doctors about stuff. then she gave me a Quest, a mission, an assignment, if you will. its a Pee Quest. she wants me to collect all of my urine for 24 hours and bring it back to the lab. i thought "cool, she's looking at my cortisol levels" which is something a lot of women get when they're being checked out for endocrine disorders; it helps rule out something or another. i was pleased to become The Urinator because i thought she was on the right track. when i went to the lab to get the details of my Quest, they were all confused cause so few people get sent on such a daring mission. they had to make a lot of calls to places to get the instructions right and while they were making these calls i kept hearing the word "porphyrin". i thought that was weird; porphyrin is the red gummy stuff that comes out of a rat's eyes and nose when it has a respiratory infection or allergy. this morning i googled "24 hour urine collect porphyrin" and guess what i found? dr. pruett is testing my porphyrin level presumably because she thinks i have a neurological porphyria.

its kind of hard to decipher the information about it because most of the articles are written in medical jargon, but from what i understand porphyrins are enzymes that our bodies normally break down, but when they can't break them down and the levels build up it can cause problems. there are several different porphyrias (or diseases caused by porphyrin buildup) that a person can have. one only involves skin, so she probably doesn't think i have that unless she's a total idiot, the other one i found, the neurological porhyria, can cause damage to the liver, tingling and numbness in the hands and feet, difficulty moving, hallucinations, and a few other things. on the surface it looks like that might be what i have, but notice that this syndrome only explains about 20% of my symptoms and includes symptoms that i never had, for example, my back tingles, not my extremeties. and it completely disregards any symptoms that i had prior to late march. i've been acutely ill since february and i've had several undiagnosed problems since 1993 that seem to be related to my current ailment! so, she'd have to diagnose me with 2 or 3 or 4 major illnesses to make her porphyrin hypothesis hold water. like i said before: it is possible that i have 2 or 3 major illnesses that all came on at the exact same time, but not terribly probable. and i'm still rooting for endocrine disorder cause several endocrine disorders could explain all my symptoms. in summary: dr. pruett is nice, but she's an internist and i need an endocrinologist. i'll still go see her on the off chance that i have something else (either instead of or in addition to an endocrine disorder) because i've been wrong before and my medical smarts are only as good as freshman biology and google made them, but i believe any time spent pursuing only her opinion is a waste. i need to branch out.
for the present, i shall become The Urinator! collector of urine in the pursuit of... of... outlawing porphyria! i just hope she isn't one of those crazy "pet ailment" doctors who automatically believe that every patient they see will have a certain obscure illness that they want to unofficially specialize in and when the patient turns out to not have it, they just send the poor guy (or girl) home with a bottle of motrin. like that dude who x-rayed my chest when i had ovary pain.. wtf? lung puncture was never an issue! i think he was just a chest x-ray pervert. like some men like boobies, he liked to see what's under the boobies.

frosting conservatory up in flames

"Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things: help, or at least do no harm."
its a quote from Hippocrates, supposedly where the phrase "Primum non nocere" comes from. you know, "First, do no harm" in latin which is widely accepted as being the general idea of the hippocratic oath that doctors take, even though those words never actually apear in the oath itself. i believe that Primum non nocere is the goal that all doctors should have whether they had to stand in front of their colleagues and teachers and vow to it or not. in fact, i think it wouldn't be a bad idea for all humans to adhere to this notion. if you enter into a situation, make it your goal to help and, failing that, at least try your best to leave things as they were.

i can only hope that my philosophy is shared by the doctor i'm going to see tomorrow. a one Dr. Taylor Pruett at the scott and white diagnostics center. i'm terribly apprehensive because i feel as though i'm setting myself up for a misdiagnosis. here i have this disease that has elduded definition for 5 months now and i'm headed into a place where i have huge misgivings about the competency of the staff and asking them to figure out what's wrong in a matter of hours. i keep reminding myself that its not that big a deal; if they get it wrong i can always go somewhere else, if they turn out to be mean or stupid, i can always walk out. but i hate medical professionals, doctors in particular, from the bottom of my very soul. i loathe and fear and distrust them, and for good reason. i don't know if i can take much more of their accusations, their lies, their abuse! my soul is tired and my body is broken and rest is so very far away. when does it end? i just want to make it to the exit of this sadistic maze!

this is a book about talking dogs. its actually quite good