Sorry that the head looks awful, but I didn't think it proper to write FUUUUUUUUUUUUUUUUUUUUUUUUUCK!!!!!!!!!!!!! in that space.
I received worse than no help from the people I saw today. And to cover my ass (Cover the ass you want to be in the world...), I must admit this is a work of complete fiction. A one hundred percent fabrication. The below is a horrible dream I had. Or something.
JK Rowling isn't the only one with a lackluster imagination... (Easy with the fillet knives fanatics...)
...On with it. Here is what happened in said dream:
I wrote the following on Wednesday night, hoping the doctors I saw today could read it, since my writing is better than my speech, especially since I've had fibro. Enjoy, and I'll tell you what happened at the Center after (this is going to be a long post, so swallow the drugs I don't have access to, if you have access to them yourself). The following is an integral piece of the story though.
Hell, it's just so damn degrading it simply must be relevant.
What I Have:
FIBROMYALGIA, which causes:
1. Chronic Daily Migraines [when I write longhand all my knowledge of grammar, punctuation, and proper capitalization evaporates like a sip of brandy on the tip of the tongue], pain 10/10, nausea 7/10, photophobia 7/10, phonophobia 10/10.
2. Pain Pain Pain Pain Pain Everywhere (10/10).
3. IBS -- have lost 17lbs. in past month... Not necessarily bad, but a lot to lose in one month -- Pain associated w/ it 10/10, decreased ABILITY to eat and drink fluids. Always dehydrated. (GP not concerned.)
4. I'm 29 and I need a cane to walk. ENOUGH SAID? (Or, rather, written?)
5. DID I MENTION PAIN? The pain is going to drive me insane very, very soon.
6. RLS -- restless legs syndrome.
7. Generalized anxiety disorder.
8. Major depression.
9. Inability to sleep longer than 4-5 hours per night because PAIN wakes me.
10. Alpha wave intrusion into delta-wave sleep, so sleep is short, and of poor quality.
11. My Mom and I shared a hotel room last night. I knocked myself out with Benadryl, which I've had IV too, it does nothing, but woke her up about every hour because I apparently moan loudly due to pain in my sleep.
1. Topamax, 100mg/day: does absolutely nothing. Have been on for one month and will discontinue, just as I have tried and discontinued every other migraine drug (plus prednisone in case they were cluster headaches).
2. Klonopin, 4mg/day.
3. Vistaril: Dr. Douchebag (psych.) wrote script for up to 200mg/day, but SAID I can take as much as 400mg. Not a good way to practice medicine. (Will be seeing a new shrink beginning March 20.)
4. Zanaflex: 24mg/day.
5. Ultram: 200mg/day. A horrible and cruel, cruel joke. My GP previously prescribed my Vicodin over 2 weekends. He prescribed (I think...) 7.5/750s x 20, but was unhappy that I took all of them over the weekend.
I did so -- and made sure not to exceed 4grams APAP in any 24hr period [that's an overdose, for those playing along at home] (Dr 9 doesn't work on Fridays, so weekends were 4.5 days) because the Vicodin couldn't come close to taming my pain. [That sentence could have been a bit clearer... But, then, it doesn't matter: The docs at the Center wouldn't read it or even let me read it to them. Why not? They didn't want to hear anything I had to say! One doctor took down the meds I'm currently on, and from then on it was a battle royale: Me yelling at them, and them trying to advocate for their position and failing miserably. It would seem the two doctors I dealt with had never been in a debate in their entire lives. Or a lukewarm conversation.]
And how could Dr 9 expect Vicodin to tame my pain? He knows my previous Doc, a pain management specialist, had me on Percocet, which only succeeded (at the low dose it was set at) at keeping me non-suicidal and able to walk one block to and from work.
Vicodin is a horrible joke. Ultram is Dr 9 pissing in my hat and making me wear it.
* MY SEVENTY-FIVE CENTS: I have only received any pain relief whatsoever from Percocet. I would suggest we treat my pain aggressively and treat me with about 70mg oxycodone to start, and see if I need more or less. [Again, could have been more clear. At least you know I'm transcribing exactly what I wrote... Although I'm not convinced it's important that it be one hundred percent accurate... Oh well. It is. The next transcription will be bullshit.]
Of course, now that I've written that, I appear to simply be a drug-seeker.
But we all know about pseudo-addiction, don't we?* [My doctor did not.]
My pain -- my indescribable, horrible, hell-itself pain has been amazingly under-treated for years. AND I WANT RELIEF AND I WANT IT NOW. EVERYONE KNOWS OXYCODONE WORKS, BUT SIMPLY NEEDS TO BE SUPPLIED IN A SUFFICIENT DAILY DOSE.
LET'S DO IT ALREADY. HOW MUCH LONGER DO I HAVE TO SUFFER BECAUSE DOCTORS WON'T SCRIBBLE A FEW WORDS ON A PAD? THOSE FEW WORDS -- THAT SCRIPT IS LITERALLY MY TICKET OUT OF HELL!
* See final page for brief summary of pseudo-addiction. [I left, briefly, to piss in a cup, after inviting the doc to read what I had written. When I returned, the page was flipped to the summary on pseudo-addiction. Bad Sign No. 1.]
6. Prozac, 40mg/day.
7. Mirapex, .5mg/day.
8. Insane amts. of vitamins and minerals: generic Centrum; 100mg Co Q-10; 100mg B-2; B complex w/ vitamin C; 1,000 IU vitamin D; 1,000mg magnesium.
ALL THE ABOVE ARE WORTH A WOODEN NICKEL EXCEPT KLONOPIN.
[What a hokey and cheesy way of saying that only Klonopin is worth taking. ...And “hokey” is, itself, hokey and cheesy.]
Dr 9 sent me here so I would be put on chronic opioid analgesic therapy [when I first mentioned this term, the doctor I was speaking to had no idea what I was talking about. It would have been poetic if a cold bead of sweat trickled down the nape of my neck at that moment. What really happened: I closed my eyes for a second, slid down in my chair a few inches, and the words “You are so so so fucked” went through my head.], which he will not do himself because he “doesn't do much prescribing of narcotics.”
[As it turns out, neither does the Center. I was informed by three people, multiple times each that I had “zero chance of getting treated with narcotics.” And they all said "getting." They couldn't even use proper English and say "being" -- and let's not start on "zero." Small things like that help me be remorseless when it comes time to yell simply to wound... When your display will get you nothing you want but the other person's pain.]
In short, he wants you to put me on COAT, which he will then prescribe for me monthly.
P.S.: I wrote all this down because I've been stuttering and groping for words in speech since I've have had fibromyalgia and wanted all this to be clear. I hope it is.
I also know it reads as though I am incredibly desperate.
You have no idea how desperate I am to get some, any -- hopefully the most possible, though -- relief from my pain.
PLEASE HELP ME. YOU ARE LITERALLY MY LAST HOPE. I have nowhere else to go.
Goddam. I'm finally done transcribing that freaking note. ...Doing that was not fun. Hopefully this next will be, for all of us:
Did I refer to the over-full colostomy bags I saw today at Fakename Whatever Whatever Pain Center as “wizards” in my last post? I'd punch myself in the balls for that one if it didn't feel like I'd already been hit by Tyson (admittedly, everywhere but there) in his good years -- and his pre-wife-beating pigshit rapist years. He lost it in the ring and outside it at the same time. Borderline personality disorder?
Whatever. Fuck all rapists.
Can people stop cheering for Kobe for fuck's sake? Maybe it wasn't rape, but...
Well, I'm pretty damn sure it was. So sit down, shut the fuck up, oh wow he jumped high and a ball went in a hoop. Your city is now better than the city the rapist is playing against. You and the rapist became one in that moment -- you cheering for him as the ball rolled off his fingers made all the difference. Now go get in a fight in the parking lot with some guy who flew in all the way from New Jersey -- a fight started because you're both body-painters and got pissed at each other on-sight.
How long does it take for the paint to come off each, individual, hair?
So the two of you go to jail, while Kobe finds a rape victim or two then buys their silence -- for now... But his story ends in a jailbox to be sure...
But back to me me me me me:
It's a good thing I have about 10 glasses of wine in me. Because:
“Frankly, I was horrified by life, at what a man had to do simply in order to eat, sleep, and keep himself clothed. So I stayed in bed and drank. When you drank the world was still out there, but for the moment it didn’t have you by the throat.”
Charles Bukowski wrote that in Factotum (which everyone should read and if anyone calls him a beat they should get beaten). I've always shared that horror with Bukowski. It's never seemed right that someone has to work to live. And so we have a society where everyone fucks around all the time at work. Why can't we just work intensely for one eight-hour day per week? We would be far more productive.
And we could live our goddam lives 160 hours per week.
The fact is, society can do whatever it wants by mutual agreement... In this case, American society. If we choose to work far fewer hours, but to actually make those hours count, we could do it, and easily. And the economy would be fine: Fuck Wall Street and stocks and ever-rising profits. Let's hit a nice plateau and stay there. If we decide we're OK with that, we're halfway to home plate. (And 99 percent of us should be because our portfolios aren't really doing a goddam thing for us compared to the Trumps etcetera of the world. Fuck the rich, kill the stock market.
[Ed.: But I could really care less... I remain untouched by the economy at large: The 12-year old socialist bastard who writes my stuff for me (I get him drunk on mouthwash and set his spirit free on the electronic page) gets the job done in 15 minutes or less.]
Sorry. Took a huge hit today and am avoiding the real topic.
I'm almost at the end of my rope, and I have more than enough to hang myself with. And I feel like using it to do so.
But I remember how one of the doctors I saw today didn't so much as flinch when I yelled at her: “What the fuck do you do for fibromyalgians (TM) in this place, give them a gun and point them out back?!”
She seemed to consider it in her stony silence.
All my doctors want me to leave them the fuck alone. They want a moment's peace. If they knew I was dead, they would be assured peace.
And I have made my life's purpose to deny them peace so long as they deny me mine. I treat all who are in the position to help me but who do not as if they are actively hurting me -- as if they are my fibromyalgia made human. And they may as well be. They have the power to make me feel about eighty percent better. Easily.
It's not a hard fucking thing! Scribble the word “oxycodone” on an Rx pad, sign it, date it, hand it to me, and TING TING TING! this dirty angel gets his wings and is sonic-booming out of Hell.
The worst thing about my death? The doctors would not be blamed by anyone but my nuclear family. Everyone else would call me a pussy who "took the easy way out."
Dears, suicide is never the easy way out. It's how a sane person responds to an insane world that has pushed him/her to the ledge...
When doctors don't do the right thing, I sleep with a clean conscience despite the fact I've uttered every obscenity I can think of at them. I sleep better for it, in fact. I have known people for only one hour and have judged them to be stupid, vile, ignorant, and without the requisite amount of empathy to survive in an orangutan colony.
But do I really trust these snap judgments?
Mostly, I think the people I deal with are horribly, horribly ignorant. And "ignorant" is rooted in “ignore.” Which is awful, because it suggests a person is choosing stupidity. And the people I deal with are. They ignore facts that disprove them. The mountain of evidence that will wash them away...
The docs I deal with learned what they learned about narcs 30, 40 years ago. But guess what? A few planets have been discovered since then, and Pluto has been demoted too (it never belonged... You have the rocky planets, then the gas giants, then... an asteroid?).
And what has been discovered about narcs in the years since these docs learnified themselves?
Well, for starters, people in chronic pain don't develop tolerance to narcs.
I was talking with one doctor today:
“Well you're so young no one would...”
(The point of using reason with these people had long past... In fact, I don't think reason has a place in the entirety of Jesusland... Get thee to a coastal city... And in the West or Northeast -- the South is tainted!) “Oh, of course, I'm 29 and I have so long to live that my tolerance would get so massive that...
"WAIT! I want you to read this!"
In my hand was the article from this post, showing that, as written above, people in chronic pain don't develop tolerance to narcs.
“No. I won't read it.”
“What?! It's only a few paragraphs! It covers a few studies!
A weird, small silence as we glared at each other, her eyes not cold, not distant... Simply no light behind them.
"What? Will reading it harm you in some way?!”
“OK, then riddle me this--”
“I won't riddle you anything.”
Can you believe this exchange? It's like a brother and sister squabbling, not a doctor and patient having a discourse for crissake!
“Listen, I know you're going to go into the bullshit--”
“I don't think this is the way we should be speaking.”
“OK, then it's crap that people in chronic pain develop tolerance to narcotics. If you would read this you would see that careful research bears out what I say.
“This is not the truth.”
“This is not the truth?! I hold the truth in my hand.” And I held my hand in her face.
“Fine. Listen.” She started to speak. So I made sure she couldn't, which meant I had to yell. It felt good... It gave me the fleeting exhilaration you get from punching through an ocean wave...
“IF PEOPLE IN CHRONIC PAIN BUILD UP A TOLERANCE TO NARCOTICS, WHY HAS [FRIEND OR LOVED ONE], WHO HAS [MS,MD, THEREABOUTS] BEEN TAKING THE EXACT SAME DOSE OF MORPHINE FOR SIX YEARS? HE HAS NO TOLERANCE TO THE DRUG AND HE CERTAINLY ISN'T A FREAKING ADDICT!
"THERE'S ABSOLUTELY NO TOLERANCE AND NO ADDICTION SO DON'T GIVE ME THAT STUPID CANARD! READ SOMETHING ON CHRONIC PAIN AND NARCOTICS THAT HAS BEEN PUBLISHED THIS CENTURY!"
I slumped a little, took a small breath, and let myself enjoy the taste of saying:
“I'm sorry, but when it comes to narcotics, I don't think a single person in this building has any idea what they're talking about. You seem to believe that opiates are intrinsically evil when, in fact, they saved each of us from death once or twice, I'd bet.
"I had an appendectomy -- what did you have?"
I stared into her eyes, mine half-closed in self-satisfaction like I had just ejaculated. There was no way I was getting any help whatsoever out of these people, and I had known that for quite a while.
But for a few hours a few people were my fibromyalgia -- and perfect proxies: ignorant, lemmings, eyes on the heels of Dear Center Director so they can follow in lockstep, and Dear Director does not believe in Evil Opioids because what good have they ever done...
...I tried to calm down by reminding myself that all of what I was experiencing is simply what happens when 40-year-old medical knowledge is applied to a disorder that is just starting to be misunderstood: My life gets completely and utterly ruined.
AND I AM SUPPOSED TO ACCEPT THIS.
GET WITH THE FUCKING PROGRAM.
...Of course, one may worry about the repercussions of one's actions -- fuck, “one” just spent four hours yelling at two different doctors, calling them nothing less than idiots (and being goddam spot-on).
So on the way home I called the Center and told the records department that I withdrew my HIPAA records-release as of that moment, and that the only person their records of my visit could legally go to are me. And, if they so much as think about sending them to anyone but me, they have to call me first.
Not even my GP is going to know what took place today. I'm just going to tell him they were only offering treatments I had already undergone -- which is exactly true. The bastards expected me to go to a hospital for two weeks and get the exact same treatments Dr 9 had given me with little success before he took off for vacation! Fucking freaks!
Goddam it I want Logic 101 to be fucking mandatory for everyone on this earth!
And, of course, there's Einstein: "Insanity is doing the same thing over and over again and expecting a different result." By his definition, I was in a house of motherfucking loons that plays at being a medical center. I used to think medicine was grounded in science, but now know better: It's mostly grounded in idiots and outdated knowledge.
I toyed with one of the doctors. I asked her to name a treatment and I would tell her if I had undergone it.
She stopped after four matches. And they were IV treatments. My god she thought she had me...
And I brought a bag full of medications I had previously taken which all doctors averted their eyes from as though the sun's incandescence itself lay inside. Every time I offered: "Don't you want to take down all the meds I've been on previously?"
"Just put that away, please," -- annoyed.
They knew I had them dead to rights, trapped in a goddam corner. I had already tried every single thing they wanted me to try -- a-fucking-gain. And they thought it perfectly sensible.
It was the strangest thing... They didn't act human when it came to this matter. They acted like very simple robots who had been given the wrong input and the only thing going through their brain-like-structures was DOES NOT COMPUTE! DOESNOTCOMPUTE! I saw them try to think of why they though why they did... In the end one doctor simply had to leave the room, with me saying,
"Hey, thanks so much for helping out a 29-year-old who has to use a goddam cane!"
"You know, it's your choice to use it."
"IT'S MY CHOICE?! I hope you die soon!"
The door snapped shut. I had jumped to my feet in a microsecond, and I believe she thought I was coming after her, armed with the cane I chose to carry just in case I wanted to beat the shit out of a woman.
Why else would I carry it?
Then the other doctor came to sit by me and said "Maybe this isn't the place for you; all you want is drugs."
I grabbed my head like I was trying to tear my hair out: "Are you kidding me? You two are talking about pumping every drug under the sun into my veins for a period of two freaking weeks, and I only want one simple bottle of pills -- only one drug -- and you think I'm the one who wants me to be whacked out on drugs?
"I realize this is going to end our session, so I have to say it: Anyone who doesn't think all of you are totally insane is insane themselves. Everything you and the other woman have said has been either a personal insult or an insult to logic. I'd ask you for a referral to the Anesthesia Pain Treatment Clinic or whatever it's called, but I know you won't give me one because they might give me those fucking evil narcotics and actually decrease my pain those assholes.
"Merry fucking Christmas."
Then I left.
...Anyway, when/if Dr 9 asks me about my appointment there I'll ask him why the fuck he sent me there.
Then I'll politely ask:
“And how was your vacation?
After he tells me how great Wherever The Fuck was, it will be my turn:
"Me? I've been great, of course! Thanks so much for leaving me high and dry, with absolutely no way to get any relief from my pain whatsoever! The weather in Hell has been fucking fantastic!”
...But I'd actually love for the Center to breach HIPAA and for Dr 9 to know all about what went down at the Center for Lobotomized Doctors. Then, besides having told MDs that they're not smart enough to velcro their kids' shoes I could get them fired and make off with some money, too.
It would almost be justice...
But who cares about justice anyway? Be honest with yourself one goddam second and realize it's vengeance that really gets your saliva going.
...And now I must apologize for this spotty account of this wretched, putrified day. I wanted to get down what I could as quickly as possible... But holy god I could tell this one a million ways a million times.
Until next, I say Viva Hate Forever because it's days like these when Hate is all I have. And I'm lucky that I can hate deeply and thoroughly enough to sustain myself.
But to you, blogfriends and fibromyalgians, love and kittens (especially if you somehow read this far!).
22 February, 2008
Sorry that the head looks awful, but I didn't think it proper to write FUUUUUUUUUUUUUUUUUUUUUUUUUCK!!!!!!!!!!!!! in that space.