29 February, 2008


I found out today through a letter that Dr ML&S sent me that he may not prescribe me any more Percocet because some THC showed up in my piss. He says he is unlikely to see me anymore as a patient (as opposed to us seeing each other as lovers who are into S&M so heavily that every sexual encounter we have almost kills one of us), even though he believes wholeheartedly that Percocet is exactly what I need.

Insanity insanity insanity...

I'm going to write him a letter, to be dropped off Monday, letting him know that, though he thinks he prescribed me enough Percs to last me until Dr 9 comes back from vacation, he did, in fact, only prescribe me enough for two weeks, not the four it would take to tide me over until I can talk to Dr 9 about him taking over prescribing Percs.

I'm also going to let him know I didn't tell him THC may show up in my piss when I saw him Monday because it didn't occur to me that it would or could. I was around smokers the Thursday before I saw him and didn't smoke, myself. The test must be ncredibly sensitive and the amount of THC minuscule.

Right now my stomach is cramping I'm so anxious. I'm swallowing 4mg of Klonopin now (done), and can't write because thinking about this is making me so physically ill.

More later.

Until then, please enjoy Turing Machine while I enjoy a massive panic attack!

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28 February, 2008


Since I have been on Percocet -- Monday -- I have found it hard to sit and write.

This could be because I still am getting used to the slight lethargy I'm experiencing as a side-effect of the oxycodone (active ingredient in Perc)... But, then, I went on an hour-long walk in foot-deep snow today...

So I seem to be finding it difficult to write about my medical situation now that I have little to bitch about.

Well, I certainly don't want my situation to change... But I need to keep writing.

I think that means I need to provide the story of how all this started: From my fibro diagnosis, to my resignation from The Washington Post, to me applying for Social Security Disability, to me having to leave Washington, DC because I was one step away from living on the street (ran out of money, ran up credit cards, sucked dry all savings) to, finally, moving back in with my parents and having to start over with new doctors.

I think that's how things are going to go.

Of course, while we're catching up with the past, I will continue to provide updates regarding all my current visits with my doctors and my physical therapist.

Speaking of Cassatt, my latest appointment with her was Tuesday. For the first time I was able to use the exercise machines in a way that actually made them sense that they were, in fact, being used. During all my previous visits I was barely able to move the pedaler (you sit down and push down with your feet, alternating left and right) and the arm bicycle (you use your hands in the same way your feet pedal a bicycle).

Immediate, considerable progress, brought to you by Percocet.

...It's amazing to think, now, of just how badly I wanted to die just last Sunday!

I also talked with Cassatt about her getting in touch with my insurance company (Thievery Corporation... Check out the group/club owners in DC I borrowed this name from) to see how much it will cost me to get my own e-stim machine. Hopefully it won't be much, since I already have met my insurance deductible for the year.

...Huh. Maybe I can still write, if I can get my ass behind my desk. But is it interesting without the hate behind it?

Stay tuned!

[Pain: 5/5.

Anxiety: 8/10.]

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27 February, 2008



Dr 9's stand in has me on 10/325s x 5 per day (10mg oxycodone, 325mg APAP) for now. I see him in two weeks, when we will talk about the dose and my past medical records (from Dr W), bloodwork from a few months ago, etc.


Pain is a 5/5!

Things were getting horribly bleak, and I have christened Dr 9's stand-in Dr ML&S for My Lord & Saviour, accordingly.

That's all for now!

[Anxiety: 10/10. I had to pee in a cup on Monday, when I saw Dr ML&S. I watched Lost with some pot smokers Thursday, but didn't partake... If my piss is dirty it could affect my treatment... Plus Dr Douchebag has me on Douchebag-level treatment for my anxiety, of course.

So I call Super-Mega-Ultra-Not-Jinx so that everything works out! (And yes... I consider myself rational, but for a few insane superstitions. At least I recognize them to be insane... And most of them are OCD-ish tendencies, not real superstitions.)]

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25 February, 2008


You likely know from Dr 9's records that, through his treatments we have been able to reduce my head pain from a baseline 10/10 to a 7/10. Also, trigger point injections were able to make me fully feel my left leg again.

However, the pain in my head being a 7/10 on a daily basis literally remains a threat to my very sanity. And while I prefer to feel my left leg rather than not, we must not forget that all I feel from all parts of my body except for the palms of my hands, base of my feet, and a certain region between my legs is unremitting, horrible AGONY.

This pain is best described in the terms of Hell: I live in a constant state of agony that I cannot get used to. From my Catholic upbringing, this is what I understand life in Hell to be.

And I live there.

And I do so because I have been treated with everything -- and I can safely say EVERYTHING -- that one can swallow, inject IM or inject IV.

The only long-lasting pain relief I have known was when I was on 50mg oxycodone via Percocet per day -- which was not sufficient to make me pain-free, but was much better than anything else I have ever been on. I was able to have a life when I was on Percocet: I worked at The Washington Post and lived by myself in Washington DC during this period. Now I live with my parents in the same house I grew up in and am waiting on Social Security Disability.

Last Friday I went to the Crappity Crap Crap Head Pain and Neurological Institute. They wanted me to check into a hospital for two weeks so they could do every treatment Dr 9 already has tried. I did not agree with their methodology because I remembered what Einstein said: "Insanity is doing the same thing over and over and expecting a different result."

Therefore, I considered their treatment approach insane.

No one will treat me with Chronic Opioid Analgesic Therapy, although current studies show that people in chronic pain do not develop tolerance or addiction, and that it greatly improves their lives.

COAT is my only hope, as absolutely every other avenue of treatment has been explored.

I may seem to be a drug-seeker. In fact, I am a classic pseudo-addict. Pseudo-addiction is an iatrogenic syndrome -- meaning, literally, that it is caused by healers. Pseudo-addiction is the rational response of a rational being whose pain has been undertreated ever since he has had fibromyalgia.

As of today, I am all but hopeless. I have an [acquaintance] who has with chronic back pain who is treated with the maximum amount of Vicodin one can take without suffering from Tylenol toxicity. But a person with fibromyalgia -- me -- who is in exponentially more pain has been made to try every treatment under the sun and kept in such misery that he has, at one point, about a year and a half ago, planned out his own suicide. It is not a coincidence that this happened after my fibro diagnosis and before Dr W put me on Percocet.

I fear that I am a victim of the political climate more than anything. Doctors are afraid to prescribe COAT because they are -- reasonably so -- afraid of the nationwide witchhunt on doctors who bravely manage pain with opioids when they are the only tools left to them.

In short, COAT is my only chance at living a life that is short of complete and utter misery. It is well-documented that I have tried absolutely everything else. And it is also well-documented that patients with chronic, non-cancer-related pain do not get addicted to or build up tolerance to opioids. Plus, for what it's worth, I have the anecdotal evidence an acquaintance provides: He has [some disease that causes neuralgic pain], and has been on the EXACT same dose of morphine for about six years. Once the "magic dose" was found, there has been absolutely no need to raise it.

Please, if you feel you can do nothing yourself, refer me to a clinic at XXXXX or a doctor who you feel you can consult with and who WILL put me on COAT. I am steadily running out of reasons to stay alive, and no one seems to care. And it is not depression that makes me say this, it is the fact that daily I become more and more convinced that my pain will never be treated appropriately.

If nothing else, please treat my back pain with oxycodone. It rates 15/10 due to my trigger points, which have made me unable to sit back in a chair for years.

If you feel uncomfortable putting me on COAT, especially since I am likely to need such a high dose of oxydone -- put me on ANY OPIOID AT ANY DOSE until I can get on a program, PLEASE.

Perhaps this program could be started at XXXXX's Adult Pain Clinic or Acute Pain Management Center. I do not know.

All I know is I need help and no one will give me what is most certainly necessary. I need a reason to have hope and to look forward to tomorrow and the day after and so on. And one cannot do that when one is in 9/10 overall pain on their absolute best days.

Thank you for any help you can give me, and for listening.

PS: My IBS pain has become so severe that I have lost 17 pounds in the last month. Physical therapy only makes this pain worse. I currently struggle to eat more than once per day -- and what I am able to eat passes right through me. I also struggle to drink more than one sip of water at a time without gagging on it, and am chronically dehydrated. Please see the blown-out vein in my right forearm as proof that my dehydration is such that it makes it incredibly hard to even start an IV for me.

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22 February, 2008


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.

Or not...

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.

Current Meds:

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.


* 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.


[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.


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.]

Fuck. Fuck...

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?!”

“No, let's--”

“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...



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.



...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!).

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21 February, 2008


Sorry for not posting yesterday: I was once again in hibernation.

And now this post is all but finished, and it hasn't really started, because my Mom and I are about to skip down the yellow brick road on our way to Fakename Pain and Neuropsychology Center (is that what I called it last time? Oh well, I'm trying to obfuscate anyway).

I just wanted to appeal to all of you: Wish me luck.

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19 February, 2008


"Today I really struggle[d] with my fibromyalgia..."

And that's after taking (so far today):

200mg Ultram (does nothing, hoping for placebo effect... Anything, somehow...)

4mg Klonopin, can't take any more today, so I'm up Shit Creek without a flotation device.

150mg Vistaril, something my quack shrink, Dr Douchebag, gave me when he took away 2mg Klonopin daily (knocked me down from 6mg to 4mg on my first visit, practically as a way of saying hello). I think it's a fucking antihistamine. Christ...

8mg Zanaflex, just taken out of desperation. Zanaflex is supposed to reduce muscle spasticity. Joyous drug...

All this to try to tolerate being alive on this foul day as I have no doc to go to -- Dr 9 is on vacation, so I can't go in for a shot of Demerol or even an IV of Benadryl... Goddam it I'd take anything to sleep or be in less pain or... Christ, not be the thing I am now.

Anxious about the What if the Pain Center doesn't help me this Friday? I'll be totally, completely fucked.

And the pain, I cannot stress enough, is unbearable. I can't think of anything else and it's the one thing I don't want to think about...

Now I can't write any more. Too much being upright for today.

I hope to post tomorrow and the next -- off Friday for the Center appt. -- and then to write Saturday with great news. Hopefully of an oxycodone script large enough to kill a horse, but simply make my daily life bearable.

Viva hate...

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18 February, 2008


I have no idea why I've been asleep since 8:30-ish yesterday (time outs for piss breaks), but am glad because no awareness = no pain. (Sleep! That's where I'm a Viking!)

Will post as soon as I...

Fuck it. I'm crawling back in bed.

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17 February, 2008


Finally, to write about the coming Friday.

...But I feel like I should let you know what happened last Friday first: I was on the phone all day, as mentioned in the last post I actually did some writing in. Dr 9 didn't set up my appt. with Dr Igor, so I had to do it myself. It is currently set for March 20. Which means I'll have to see Dr Douchebag (current psych) one last time. Oh well. Three minutes, a month's worth of Klonopin. Still, I obviously didn't play my cards right.

...So I saw my CPA last Friday. My 2007 medical expenses should ensure I have barely any taxable income. I spent between $10,000 and $20,000 altogether. Jeez...

Now to this Friday: Drs 9 and Frankenstein made me set up my own appointment (Dr 9 said he would, personally, refer me, but didn't) with Faketown Head and Pain Center. The center's protocol is to have me (and all their patients) spend the entire day having various tests run and talking to various doctors -- pain specialists, shrinks and psychologists. Fun!

In the meantime, I have to dig up all the medical records from past doctors that I can, plus my MRI films, etc. Still, they're going to do a lot of testing themselves.

Which is fine. I'm sure they'll do extensive blood tests, but one can survive deprived of a pint or two, right? Hell, they can do just about anything they want because:

I'm seeing this place to be put on chronic opioid analgesic therapy. All I want is to be put on OxyContin so I only have to take two pain pills per day. Then we can tweak the dose to perfection -- until I am as pain-free as possible.

Finally. Finally. Finally. Finallyfinallyfinally. (I would really like to repeat that word fifty more times for emphasis...)

I've only been waiting for this (COAT) since I was diagnosed with fibro in early 2006.

So I have something to hope for... Hopefully only one more week of agony left until I get some real relief... Or relief I can count on 24/7. And then I can stop seeing Dr 9 every goddam day Monday through Thursday, and hopefully get Cassatt, my physical therapist, to get the ball rolling on getting me my own e-stim device. Once I get my own device I can stop PT and try to pretend I never had to endure it in the first place.

I'm convinced PT is awful for fibromyalgians. It only causes us more pain. And even when I get put on COAT, going to PT will only exacerbate the pain COAT will be trying to cover. Counterproductive.

I skipped last Friday's PT, meaning that I've gone without it since Wednesday. And I finally feel only as miserable as I did before I started PT. Though I'm going in tomorrow, it's for e-stim only. I'm not going to lift a single weight (even if they are only one to five pounds). Anything I do there makes my abdominal muscles hurt so bad I can't eat for days afterward.

So fuck that shit.

[I apologize that this particular post is as interesting as drywall. A much more interesting one is forthcoming: I feel I owe an explanation for my many mood swings, from loving Dr 9 one day to hating him the next... From believing I'll never need opioids again one day to wanting them more than food the next... And on and on. Stay tuned!]

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16 February, 2008


Embedded Video

Admission: I don't feel like writing today, but that doesn't mean I don't feel like sharing.

Hope you enjoy... It's strange for just one band to have three of the five best currently playing drummers.

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Embedded Video

Well, reasons: They're one of my favorite bands, and I have family stuff today.

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15 February, 2008


Here is the National Fibromyalgia Association's Clothespin Challenge:

1. Place a clothespin on your finger.

2. Set a timer for 30 minutes.

3. See how long you can bear the pain. Did you leave the clothespin on for 15 minutes? 10? 5?

4. For each minute you adverted [sic] that clothespin pain, donate to the NFA-$20 a minute, $10 a minute, $5 a minute...

5. NOW. Imagine this pain forever... This should help you understand what it is like to live with constant pain -- but people with FM can't just "remove" the pain the way you can remove that clothespin!

ME (not NFA): I dunno if one can come up with a way to help others realize how much fibro hurts -- especially because the pain is everywhere. Essentially, when you get fibro you become pain.

...And put the clothespin on your dickhead or clitoris, not your finger. I'm sure the NFA would have suggested you do this, to cause you pain more like what a fibromyalgian feels, if it didn't have to be PG.

[Upcoming: My day spent on the phone, my CPA appointment -- plus another appointment.

This appointment is for next Friday and has me hopeful. Which is probably for the worse... I've had fibro for two to three years (exact onset is tough to determine), but apparently still haven't learned that hope is a horrible thing to have when your life is in doctors' hands.

Well, fuck it. Hopeful.

At least I will actually look forward to something for the next week, even if next Friday I'm made to feel like Carrie on prom night, but without the superpowers necessary and sufficient to exact my vengeance with.]

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14 February, 2008


...Though I did write, yesterday, that I would come home with my shield or on it. Today.

In that case, consider my carcass delivered.

Why did I lose the battle? It wasn't to be won. (Which is why -- other than megalomania -- I'm drawing a parallel with the Battle at Thermopylae. That, and I was only too happy to co-opt a turn of phrase from "300" because Frank Miller is a genius nonpareil. Read all his Sin City books and watch the movie based on some of them at least 50 times. I have, and it's made me a better person).

I must apologize here because, to fully discuss the Battle at Lummox Medical I would have to discuss my family, which I am not willing to do. My life is the one up for vivisection...

Sorry... But moving on:

The short of it is that Dr 9 never was going to prescribe me narcs. And, like a worm, he desperately seeks to pass the buck of prescribing them to whoever he can. He acknowledges that I need them, but doesn't have the balls to simply prescribe them himself. Also, like a worm, he both shits and eats out of the same orifices.

So tomorrow the war continues, as I am to see Dr Igor, a psychiatrist who works with the psychologist I saw last week. (About time the psych had a name and so it's, of course, Dr Frankenstein.) However, the appointment has not yet been scheduled, and if it isn't scheduled tomorrow by Dr 9's nurse (a saint) I likely will not see Igor until March.

Which is the long way of saying the appointment will take place in March. (Though the nurse is a saint, she's only one person, and has been left to deal with the hundreds of bodies Dr 9 leaves in his wake, especially since he is now officially on vacation. Good goddam riddance. Hopefully it's monsoon season wherever he's gone...)

...But if I somehow get my appointment with Igor tomorrow, there is an infinitesimal chance that he may prescribe me some sort of painkiller for what he could officially say is depression caused by extreme pain. When that doesn't happen, I will be referred to a guy Dr 9 and Dr Frankenstein know at University Pain Treatment Center. My appointment there will take place in the year 2010, most likely. The center will thoroughly evaluate me and put me on a schedule of narcotics that Dr 9 will then be able to prescribe to me every month.

Why cut out middlemen? Why not play America's Game -- Cover Your Ass -- as close to ad infinitum as one can?

So little gets done in so many facets of work-life, and for the people who have to deal with the product(s) of this work-life, because all people are doing is following the Law of Cover Your Ass.

If we all weren't such pussies there could be a sea-change in how things get done. But no one wants that because no one likes responsibility.

Hell, I personally hate it and want it in any of its forms as badly as I want herpes in any of its forms. Gandhi said "Be the change you want to see in the world." And he was shot when he wasn't Covering His Ass.

Which brings us nicely to why I have to wrap up this post: Someone is doing my taxes for me this year because I spent way more than ten percent of my 2007 income on medical expenses, and so I can deduct them. Plus, I hopefully can deduct a lot more I don't even know I can. My parents are paying someone to go through the papers I need to gather tonight for the appointment I actually will have tomorrow:

The appointment with my CPA.

[Tip: Toradol is much more effective (read: somewhat) given IV than IM.]

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13 February, 2008



Today I found out that the psychologist I saw last week, who talked a good game about advocating for me to Dr 9 this week "hasn't finished his report yet." Dr 9 is about to go on two weeks' vacation, and the psych's receptionist, when told this, said they would try to get Dr 9 the report before Dr 9 leaves, but cannot make any promises.

I feel a bit like the guy above must have felt. Except that... hum. I was about to give a detail maybe I shouldn't. Anyway, the guy above was lashing out at I can't imagine what.

...The point being that we're both angry.

(This post would have been a lot better if I could have let myself include some background for the photo...)

I see Dr 9 tomorrow and will emerge from my appt. with a script for painkillers from the back offices or not at all. I'm prepared to stage a sit-in.

For now, tired, too anxious about tomorrow and entire situation to write more.

Tomorrow I plan to come home with my shield or on it...

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Please see this abstract:


It's a review of available data on people who are living in chronic pain that is not caused by cancer. Important for fibromyalgians is the fact that "Patient diagnoses included back pain (31), neuropathy (20), joint pain (13), visceral pain (7), reflex sympathetic dystrophy (RSD) (7), headache (5), and fibromyalgia (3)." The number of people in the study with the specified pain/problem is the number in parentheses. Fibromyalgia can, essentially, include all the types of pain mentioned before it except that associated with RSD.

Perhaps the most important thing this study does is dispel the crushingly stupid argument that people in chronic pain get addicted to painkillers: "In a study of 11,882 patients who received narcotics, only four patients became addicted. Other studies report a slightly higher incidence."

And this is one of THE MAIN reasons we (people in chronic pain) are denied opioids? Shave my taint!

Another great thing discussed is the fact that "It is also necessary to differentiate between pseudoaddiction and addiction. Pseudoaddiction is a term that has been applied to patients who develop behaviors reminiscent of the addict as a result of iatrogenic undertreatment of pain. According to these criteria, the authors found only one case of addiction (1%) in a patient with a history of substance abuse."

One. Case. And the one person had a history of substance abuse. Nothing more to say, case made.

One's tolerance increasing to mammoth proportions is a reason always given so physicians can feel comfortable denying patients (especially young ones) opioids. Uh-oh! Here's more from the abstract:

"Pharmacological tolerance is defined as the need for increasing doses to maintain drug effect. This study demonstrated no pharmacological tolerance occurred. The study also showed it is possible to use opioid substitution to find, in most patients (81%), a good balance between adverse side effects and good pain relief."

This post will end with the abstract's final paragraph. Please see a previous post to see how pissed off this issue (the non- and under-prescribing of opioid analgesics to people in chronic pain) gets me. Also know that tomorrow I'm letting Dr 9 read it. And then I'm going to ask him how he can NOT prescribe me Percocet (what I'm shooting for).

"Different chronic noncancer pain syndromes can be treated with chronic opioid therapy. A patient should not be classified as unresponsive to an opioid until a trial of other opioids has been given. If it is necessary to change the opioid because of side effects or inadequate pain relief, with each new opioid tested, the number of patients in whom this new drug will be effective increases. Failure of one opioid is not a prediction of failure of another."

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11 February, 2008


[Fox News doesn't have the copyright to the above for some reason...]

This should be short because I am damn tired today.


Because I went in to my doctor's today determined to make him deal with my body and limb pain. I wouldn't even say a word having to do with my head or headaches.

I also was determined not to get kicked out of another practice, so I knew I had to keep myself from yelling, and that meant a few tears would show up in my eyes as I described my pain and how nothing had been done about it and nothing at all seemed to be in the offing... Except physical therapy, which makes my pain a lot worse.

Lately I can't eat and it hurts to digest even water because it feel like I spend every day doing nothing but crunches. My stomach is all Alien-acid-infused muscle that surrounds a stomach full of thousands, millions of microscopic, circular razor blades.

Anyway, the doc knows all about my body pain. I've told him enough times. The fact that I no longer can eat or drink fluids should have had him worried, however.

And maybe it did. Because finally I was put on an IV (They wanted to do this last week). The nurse and doc wouldn't tell me what was in it because they wanted to see if it helped my pain, and by how much. As I was asking if the sauce was supposed to feel like lava in my bloodstream, I passed out.

When I woke up, it was easy to gather that the nurse and doctor were a little too self-satisfied -- I had come in saying I needed painkillers to be able to eat and drink (water) in large enough amounts to keep me alive. But I was proven wrong. Obviously, their IV had worked on my pain, or how else could I sleep?

Because the fuckers gave me a drip of fucking Benadryl, that's how. And you only give you or anyone else an antihistamine if they're having an allergic reaction and/or if you want them to stop annoying you (if it isn't given for pain, it's given to put people to sleep). I don't know why parents don't make use of copious amounts of antihistamine on long car rides...

So I woke up, came home, went back to sleep, woke up and am writing this instead of having dinner.

And, of course, my pain is right where it was before the Benadryl. (Point conceded: I needed the sleep. More important point: I need 24/7 pain relief you (Dr) scrotum toupee (toupees made with 100 percent all-natural human hair)!

The doc is off tomorrow, and I'm fine with not seeing him then. Hopefully it will give my psychologist's materials time to get to Dr 9. After he gets the psych's opinion, if I'm not put on painkillers it would be wise for me to quit the practice altogether and just order pills online or score smack on the street.

But I live with my parents, so none of that will be happening.

Fuck. Stay tuned to see how I get out of this corner...

[Pain: Intolerable.

Anxiety: Intolerable.

Hell: other people.]

PS: I can't say enough that everyone with fibro has a duty to make their doctors' lives as close to their own hell as possible until the docs finally gets to the point that, to make their own lives better, they have to improve yours. It's the only way fibromyalgians are going to get the meds we need.

We have to fight and scrape and claw to be the ones who define how fibro is treated while fibro is just coming into mainstream consciousness.

At the doctor's office, keep being an asshole. And if you aren't one, start now. No matter how nice your doc is -- Dr 9 is nice as hell, as far as his demeanor, all the while keeping me in a prison he could write a few words on his script-pad and set me free of (a malevolent fuckwit with a smile is still a malevolent fuckwit) -- if he or she hasn't gotten you as close to 100 percent pain-free as possible, he or she is an impediment, may as well be the one causing you the harm by not taking it away, and he or she doesn't deserve an ounce of respect or deference. Give none but what is required to keep you in the practice, receiving the best treatment you can until you can get better and better and better treatment. (Ask everyone and their double-secret cousin about doctors who are good with fibro or just plain loose with narc scripts.)

And nothing really works for horrible pain but narcs. Don't settle. Never settle, and never give in. Fuck what's convenient for your doctor, for the medical community -- when your every waking minute is agony, you deserve to be a little selfish.

And I know writing "I need narcs" a million times makes it look like I want narcs for their own sake. Well, maybe to those of you who took a nasty fall a while ago and didn't come back 100 percent from the concussion. I refer you, Concussion Charlies of the world, to the above description of my abdominal pain. And to all my other posts which, in some way, I'm sure, refer to my pain. The sad thing is these descriptions aren't exaggerations.

And Charlie, I wonder if a scrotum toupee wouldn't cover up your scar(s) nicely, while making you irresistable to women!

PPS: If anyone has experienced near-100 percent fibro relief from anything but narcs -- and if anyone writes me about the guafenesin protocol it goes right in the goddam trash unless it comes with a double-blind, controlled study proving its efficacy -- tell me about it.

If there were such a thing, I think all fibromyalgians would be on it though, don't you?

When what is, essentially, a cure, is found, the news can't be guarded by grizzly bears that protect the thing as though it was their own cubs.

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10 February, 2008


Whenever I go on a serious not-sleeping bender, I do something I regret as sure as if I haven't been laid in months and go out for the sole purpose of drinking Jagermeister.

Both ways I end up with someone or having done something that, come the next day, I end up having to explain away to my friends.

Well, I'm going to skip having to rationalize what I wrote in the posts below -- this one, and the unnecessary addendum that got into this one (I recall obsessively writing and editing these posts for hours and hours... Aimlessly) -- (I recall obsessively writing and editing these posts for hours and hours) -- by simply pressing on and not re-reading them. It's going to hurt, since grammar and pitch and tone can always be improved upon, and I have always, until now, edited posts to improve these for at least a day to two after they're completed.

So accept the two posts for what they are: the ranting of a sleepless mind, and please let me know if i wrote anything that could be used as cause to have me committed to a mental hospital.

[Pain: I feel like I opened a bag of 50 razor blades and swallowed them with a madman's aplomb, on top of the worst pain I've been in in my back back and limbs. Maxalt has reduced migraine/headache/oh what's it matter what the fuck I call it since it's there every goddam day from off the chart to an 8/10. Much rejoicing. Maxalt continues to show that it is losing its efficacy.

Anxiety: I have smoked too many cigarettes in the past couple days and so my lungs feel leaden and un-inflatable. This contributes to a feeling of suffocation, which feeds my anxiety to a 10/10.

Hatred of doctor (though likely to pass) and of Ultram: 10/10. The razorblades would be easier to digest with Vicodin.]

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08 February, 2008


Gawd a'mighty I miss skating (source of the above). Not the bleeding under the skin so much as the me being able to do it meant I was able to use my legs quite well. I really liked using my legs. And if I have my way, we're oh so far from done.

Regarding the bruise, above: I never realized that it takes certain and special circumstances, like presenting with a bruise as above for a doctor to believe you're in a lot of pain.

And I didn't know it's far from guaranteed that they'll do anything about your pain.

Can you imagine a doctor telling me to my face, after looking at the bruise on my leg (let's say I have it right now):

"It's just a bruise. It'll be gone in a month. Hang in there. Stay positive. You can't let yourself think about it."

"You need to separate the bruise from your self. You can't let it take over."

"The first thing we need to do is worry about your migraines."

"Take your pain [doc makes fist, holds to leg] and just put it right over here [holds fist in mid-air]."

Well, I used to have that bruise and I have fibro now. The bruise hurt a lot, as far as pre-fibro pain goes. Still, it didn't bother me much. I couldn't bend my leg much at the knee or hip, but the pain, as it always used to be for me, was annoying, and not anything that felt... personal. I could always rationalize it away as my self's way of reminding me (in this case) "Hey buddy, leave the freaking leg alone for a while. One, you're too old to be skating. Two, when moving this appendage stops being annoying, you can move this appendage."

Ug. It's late here. Better get to it. If any one of us had a doctor who told us any of the above when we presented with the bruise, we would be at a loss for words at best and swearing like me when I'm drunk at worst (for the record, I don't drink. Mirapex changed my brain chemistry, and now I haven't the slightest taste for beer or wine, when I used to have to pair dinner with the right red or ale).

I should explain "The first thing we need to do is worry about your migraines."

When I began seeing Dr 9 I stressed that pain everywhere is my problem. Because pain everywhere is almost the definition of fibromyalgia. So he said the above.

The worst thing? The migraines are still all he cares about. I could have understood if that was all he cared about the first or second week... But fibro isn't a migraine. And I know he knows this. If I thought about this for too long I would get too angry to continue seeing Dr 9, I'm sure. And so I try to maintain a certain safe ignorance.

He stopped prescribing Vicodin for me to use over the weekend when he found out (because I told him outright, without him asking) that I used the pills, as well as for headache pain, to try to improve my sleep quality and duration.

Goddam it, the bottle said "Take as needed for pain"! He's lucky I know 4 grams of Tylenol is an overdose or I could have taken the whole bottle (20 pills, 750mg Tylenol each, 15 grams Tylenol total) in a day waiting for Godot (read: my pain to go away)!

Dr 9 is fine with me having any and every pain but headache pain. I cannot understand, but only hope the psychologist I saw last week will pull through for me and let Dr 9 know that when I describe my back and limb pain as excruciating in excruciating detail Monday through Thursday I am not doing so because I love the word arrangements: "red hot pokers, six on each side of my spine, in through my back, halfway through the torso," "arms swelled with ache to what feel like Popeye-like proportions," and"My legs always feel as though I just finished sprinting as hard as I could for as long as I possibly could."

These are the descriptions I find most apt. And I repeat them often to Dr 9 in the hope that they will allow him to imagine how I feel enough to allow him to fathom the pain I am in. Because I want --need -- him to exactly comprehend the pain I am in so he will treat it accordingly!

Perhaps what we have here is a failure of adjectives...

Sprain? Ice and Advil. Break? Ice, shot of Demerol, cast, Tylenol-3 to take home. Red-hot motherfucking pokers in your back?! I need you to wear a smile for me every day, and you'll be better before you know it!

Fuck you Patch Adams!

...Crap. I thought I was going to get to the point.

...The bruise above looks like an 8/10. I felt it then, when I had it, as a 5/10. In the state I am in now it would feel like a hand job.

Were I to see a doctor for it, the bruise likely would be treated with high doses of NSAIDS in an attempt to reduce the inflammation, and any patient with a bruise like this wouldn't be fucking condescended to. The doctor would do his/her best to relieve the pain -- treating its cause and the symptom together with Motrin, most likely -- in stark contrast to the standard treatment given to fibromyalgians to relieve their pain.

The following may be the only treatment, or it may be used in conjunction with trigger-point injections, etc.): the doctor runs a catheter straight from his dick/her urethra and makes you drink his/her piss straight from the plastic tube while it's warm. (From a catheter and not directly because, although the good Dr may be a sick, sadistic fuck he/she nevertheless has a fetish for sterility.)

If any pain can be set aside, it's the one I didn't bother going to a doctor for, because it was only a bruise, because it did only hang about for a month, and because it was minor enough that I could take my mind off it.

It is not possible to set aside fibro pain -- the pain I have described above. This pain is forever, just like the fact that diamond commercials will always make me want to throw my TV out a window. And if pain made your biceps feel like balloons inflated with agony-oxide (ug, that wordplay was substandard), could you think about anything else? If your head throbbed every time you moved it, could you ignore that? If your back was so tender to the touch that you could not so much as sit back in a chair, could you whistle Dixie? If someone poured petrol on your thighs and lit them up while you were reading a newspaper, would it take the paper, itself, catching fire to make you aware of the burning on and in your thighs?

If you did not answer yes to all of the above, don't get fibro. Urine and smiles really aren't that great as painkillers.

But wait -- who could forget Lyrica! It won't reduce your pain, but it will make you fat! I think the average person would be lucky to experience a decrease of 2 points out of 10 in their baseline pain, and the weight isn't going to be worth it. Anything more than two points? Enjoy the placebo effect. A hypnotist would be cheaper. Or take a 25 cent Percocet and drop five points.

The only bad thing is you have to keep taking it because you become an addict when you say Percocet three times fast. Or whatever -- moot point. A fibromyalgian always will be in pain, so why would he or she ever not want to take whatever narc works best for him/her?

But you build up a tolerance and then nothing can help you. If I had my druthers I'd be on 80mg of oxycodone per day, starting today. I'd be able to stay at this dose for at lease a year, probably five. By the time I'm eating 160mg of OxyContin twice a day I'll be... For fuck's sake, I'm not going to live that fucking long.

And I can try taking my oxy with naloxone and/or naltrexone, which prevents tolerance in 50 percent of people. If I'm not one of the luck half, I will spend decades increasing my dose of oxy, then spend a year weaning myself off it to reduce my tolerance. It will be a bad year. You want to know what, though? I've already been through 2006 and this far into 2008 -- more than a year of having this killing pain, with nothing to relieve the agony. And I've survived.

For spite.

Trigger-point injections also can be used, but I'm already beginning to find, after less than one month of TPI therapy, of being stuck like a pin cushion -- usually three (rarely two) needles w/ marcaine four times per week -- that they may have hit the wall as far as their utility. Just as we are making progress with my back's trigger points -- I have regained most of the feeling (albeit almost all that feeling is PAIN, any sensation is better than none at all. The way someone being indifferent toward you is worse than them hating you. But not really) in my left leg and foot -- my shoulder and TMJ trigger points are causing me tear-my-teeth-out migraines. Since there's only so much marcaine one can have injected in a 24 hour period, there is only a certain amount of relief I can get per day.

And trigger points fight back. You don't get a nasty reputation as a lifelong disorder unless you're an annoying (at the very least) lifelong disease. I could be an HPV carrier. I won't know unless I get tested, and I probably won't because it doesn't give men symptoms.

So fuck the needles, here's all I need: Klonopin for generalized anxiety disorder, and oxycodone and my own e-stim for fibromyalgia.

I plan to buy the e-stim with the help of my rehabber, Cassatt, so most of it should be paid for by insurance (esp. since I have met my deductible for the year already). And, once I finally move to wherever I'm going next, I hope to find a doctor who will simply write me maintenance scripts for Klonopin and oxy. It should be a lot easier anywhere but here (Lummox, Jesusland).

Right now I take Prozac for my GAD, too, but that's just so I don't have to take as much Klonopin (theoretically. Probably bullshit). Klonopin is in another vilified class of drugs, the benzodiazepines. Therefore, doctors try all they can to keep you off them. Dr Douchebag, my former shrink, reduced my Klonopin dosage from 6mg to 4mg practically as a way of introducing himself when we first met. He earned his nickname immediately.

So no more Prozac. Klonopin has been around longer and is known to be safer. Plus it's a lot cheaper. And I'm on a slew of meds for fibro that, I'm sure, do no good at all (because I don't feel any better at all), but that Dr 9 and all the rest must believe that, if they're good little doctors all year long, or if they say the right incantation over will do what they know oxy does.

The sad -- no -- the disgusting, reprehensible, stomach-churning and unforgivable truth is that I'm on the "fibro" meds I'm on because it makes it look like Dr 9 is doing absolutely everything he can. In fact, he's doing the least possible. He's playing it as safe as he can. The word hasn't reached Jesusland that Ashcroft no longer is attorney general. And when the wagon trains arrive, that word isn't going to make a ripple in the mud puddle.

(Aside: There's a huge illegal drug problem in Jesusland, in part, because people aren't prescribed strong enough or, simply, adequate amounts of legal medications they need for legitimate reasons. Something I'll come back to later is that the way to win the WAR ON DRUGS is to stop fighting it. Maybe then we can let South America have a few democracies...)

OK, so fuck all this shit.

All I need is my own e-stim, Klonopin, and oxy. Insurance: $160/mo. Dr's visit: $25 copay/mo. Stim: paid (will be). Klonopin: about $10/mo. Oxy: about $20/mo.

Total health care costs per month = $215.

Things as they are now are too much, in terms of what it will cost me when I repay my parents, in terms of running around to the doctors (full-time goddam job) and getting barely a goddam return on my goddam investment!

Goddam it it would just be so amazing not to need doctors at all.

...Wow did this post get lost in the woods. I guess this will be my weekends now, without painkillers: complete inability to sleep, total insomnia, writing nonsense but completely immersed in it, obsessed, mind shot, ability to form connections and make associations locked in a trigger point, chain smoking, hurting everywhere, squinting against the light, desperately trying to milk the venom from all 26 letters.



Please see "SEE THE MAGICAL HORSE PUSH THE MAGICAL CART!"... again. I added another anecdote to it. I was editing the post, as I often do when I re-read previous ones, but somehow ended up tacking on a story that didn't really have anything to do with anything. And I got trapped working on it for hours somehow. All the sleep deprivation is definitely getting to me. Please notify me when I have gone completely insane. (Read: crazy enough that it isn't fun or funny any more.)

Whatever I spent all that time on, it's there for your reading pleasure.

...As long as I'm just throwing stuff out here: feedback. Please give any and all you'd care to. Especially re the format of the site. I think I need to tweak things. I want to make this blog as easy to read as possible, of course, yet not boring. If you have any ideas re what I can do, I will be Jack's attentively reading eyes.

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As mentioned previously, I'm now in physical therapy. The best part of it is, after my fifteen minutes of exercises that would bore and insult the strength of a five-year-old, but left me needing a shot of Demerol on Wednesday, I get to lay down on a comfy table with a comfy pillow under my head and have four electrodes placed on my person.

Four of these were used Wednesday to form a rough square in the middle of my back on Wednesday, then the juice was gradually turned up, click by click. (I couldn't hear clicks, but knew the system must be a click-dial or a push-button by the way the intensity stepped up.)

"Let me know when you begin to feel it."

In a few seconds my muscles began to... hum beneath the electrodes -- contracting and releasing with increasing frequency as the dial or whatever was turned up.

"Yeah, there it is. That's funny."

"OK. We want to get to the point where the muscles are almost going to spasm, but not quite."


So the dial went up for a while. The sensation was pretty cool... Like a massage from an android with ten thousand fingers, each 10,000th of an inch in diameter.

When we found the right point, a cooling blanket (I chose cold over hot) was laid over my entire back and I was left to chillax. (Yep. Wrote "chillax." There's no one here to reign in my obnoxiousness.) Every five minutes Vincent van Gogh (not his real name) came in to turn up the stim a little, since I could take more as I adjusted to the cold.

So Thursday I was completely wrecked from my toddler's workout. Absolutely every part of my body hurt and hurt bad bad bad bad badly.

Well, maybe there really are no absolutes... Because the ten-inch square the e-stim had worked it's magic on was pain-free.

Today I woke with a 12/10 migraine and my backs' trigger points ' keeping the migraine company at such great heights.

But, after what is for me fifteen minutes of agony, next-day-delivery, I received e-stim treatment on my upper and lower back.

I cautiously say that my back pain could be reduced to a satisfying degree tomorrow. And it's strange to say that I look forward to getting up in the morning.

Which is sad.

Which is to say, it's depressing that I'm so obviously depressed.

...Pushing right along, my physical therapist Mary Cassatt says that in a month or so, when it is proven to my insurance provider (thievery corporation) that the e-stim is a great benefit to me, I will be able to get a unit to use at home. I will be one step closer to being free from doctors' whims.

I no longer will need trigger point injections. E-stim will supplant them -- relaxing the muscles in the same way, and able to do so just as well and everywhere injections can be given, including the TMJ, which I was sure to ask about today.

Then all I will need is a doctor to write periodic scripts for COAT (chronic opioid analgesic therapy). (I can take care of physical therapy at a gym.)

And that's it. That's all there is to it. I live happily ever after.

The hard part is now: being so close.


[Pain, overall: 7/10.

Anxiety: 7/10.

And my god did I pack in a lot of references into this post...]

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07 February, 2008


Yesterday was my first day of physical therapy. According to Dr. 9 and my physical therapist, the best thing for a fibromyalgian to do, because they are in so much pain they practically cannot move, is to move. To exercise.

Which offends logic so thoroughly it seems like it could make a Pee-Wee perverse kind of sense...

I bruised a kidney -- good ol' lefty -- when I was skiing one day when I was about sixteen. Eventually I pissed pink in the ER's bathroom (blood. Gross), and was told not to ski for a month or so while I healed. But I was out on the hill two days later because we were having a good season. The only problem was I couldn't put any weight on my left leg without experiencing horrible pain, not unlike the pain I experience when I walk now. But the good, then, was I could ski using only my right leg, having done it before now and again to showboat.

Proof: Showing off can sometimes do more than help get you laid and/or demonstrate that you are an asshole and/or make you look like you lost a ski.

I took a few easy runs, and was actually starting to find respect for the ER doctors' opinions because the pain in my left leg (stiff, straight, immobile) and my right (lactic acid lactic acid lactic acid) was getting to be too much when BANG -- I ran into another skier. She turned into my line and I couldn't turn away in time because I simply wasn't that proficient a, basically, one-legged skier.

The next thing I knew my eyes were closed, I was scared and crimson was on my eyelid-projector-screens. Had I perforated my kidney?

But I couldn't wallow in my fear. I had hit a girl. And a hot one (very small ski hill in a very small area, hard to not have previously noticed her). So I opened my eyes and tried to stand so I could see if she was OK. To my amazed amusement my left leg could take about 75 percent of my weight.

And the girl was just fine. Although I didn't get so much as her name.

Plus, my anecdote is another example of Dan 1 Doctors 0.

I love it when a good analogy comes together.

So I have no problems with trying to do too much too fast, with trying to tough it out, with living by the wicked-awesome slogan no pain no gain and all that rot, especially when it comes to recovering from an injury or treating a disorder. It's a big part of why I wants me drugs and I wants them now -- so I can get the fuck on with my life already.So today I saw Dr 9 and had pain off the charts from stem to stern. I received trigger-point injections in my shoulders in a vain attempt to relieve the tension caused there yesterday, a GI cocktail in a vain attempt to settle my stomach because the pain I'm in makes me nauseous, 20mg Maxalt in a vain attempt to get rid of my migraine, a prescription for 60mg Maxalt in what I hope won't be vain attempts to get rid og my migraines this weekend, and a script for a refill for tizanidine which I shouldn't have bothered mentioning because it has no relevance to this story whatsoever.

"Dr 9, what should I tell the ER doctors when I go in Saturday because I can't stand the pain brought on by physical therapy Friday?"

"You won't need to tell them anything because you won't need to go.

"You'll get through this. It's tough now, but you have to get out of this mindset. You're really close to feeling a lot better."

My eyes naturally darted to his script-pad.

I can't imagine my doctor not being thought of as an optimist.

George W. Bush is routinely referred to as an optimist.


I typed up another anecdote while I was creating this post (yeah, I actually edit these things...), and now realize it isn't necessary, but I just can't delete this one.

So let's go gonzo: It's below, without much of what made it relevant to this post, but it's still along the same lines. Basically, too lame for its own post. So kinda a freebie. And freebies are always crap.

I apologize. I had to include it because I'm an egomaniac, plus I simply find the image of me jammed into the middle of a street like I half-dove into it riotously funny, and hope you do too.

I Rollerbladed for about fifteen years (tricks, not fitness; I wore jeans that could fit two people, not spandex that shows two balls). If I ever missed a trick I would make myself do the exact trick again. It was a good way to overcome fear.

...Well, no. Not at all.

But it was a good way to progress, quickly, as a skater. Doing the same trick I had just failed, often painfully or scarily (once I slipped out of a grind on a 20-step handrail and caught myself upside down, my hand somehow gripping the same rail, my forehead an inch from a sharp concrete step-edge) meant I could do most of my tricks while, at the same time, barely suppressing mortal terror. And when you can keep doing something that scares you whiter than Conan O'Brien, eventually you get good enough at it that you can maintain your melanin.

The story below shows how high my pain tolerance is and, therefore, how bad my fibro must be for it to reduce me to an inconsolable, petulant child who acts as though his older brother just ate the last of the ice cream right in front of him (smearing most of it on his face for maximum effect) while his favorite toy was chewed to plastic tatters by the dog, followed by his dad announcing that grandma "has gone to live with god," prompting the child to ask if it was the grandma who gave him a lousy sweater last christmas or the one who always tries to kiss him on the lips and if they have to visit her on christmases and easters still. And now the kid's soiled himself because of his frustration, anger, confusion, and the look his dad gave him because of the questions.

All at once everything is wrong and the child can't help but think that if he had been raised by androids this wouldn't be happening at all or, at least, if his mom hadn't died when she was C-sectioned when he was born, she might walk in and tell everyone to shut up for five minutes so she could change him and then tell dad to stop crying like he does when he drinks grown-up juice and looks at pictures on his birthday and shoot the dog already! It still has what's left of SpongeBob's arm in its mouth...

...Was I writing about skating?

At a favorite skate spot in college a ledge projected straight out from a ten-step descending staircase. The ledge ended six inches short of the road, which ran perpendicular to it. The ledge was seven feet high where it was closest to the two-lane street. I wanted to jump from the end of the ledge, clear the street and land on the sidewalk on the other side. Between point A and B: a mute grab (right hand grabs left skate) 360 (one revolution in the air). I wasn't too bad a skater then.

So I gave myself about fifty yards and skated as fast as I could to the ledge and hopped onto it -- it was just a few inches off the sidewalk -- going about fifteen to twenty mph. The ledge was just wide enough for both my skates if I kept one slightly behind the other. The ledge was only about ten feet long, so with my speed I didn't have much time to land from the hop-up, bend my knees and position my arms to throw the 360, all while having to worry about whether I would clear the opposite sidewalk's curb to land safe and clear.

...Maybe I was thinking too far ahead.

Toward the end of the ledge my right skate slipped off and I ended up twisting 90 degrees as my arms carried me through some of the spin I had planned, but tried to abort. Though my right leg slipped down, I was already jumping with my left, so I didn't fall straight down, but went out, becoming parallel to the ground and then threatening to go vertical. Your head is your center of gravity in a spin. I rotated slowly counterclockwise (my preferred way to spin) and my legs crept toward the sky.

Luckily, seven feet is only seven feet, and I hadn't jumped with all my strength -- not even with just my left foot. It's a good thing falls like that seem to happen in slow motion, because I was able to tuck my right wrist and elbow to my stomach, out of the way, where they didn't get broken. (Wear wristguards! Not every fall can happen in slo-mo! ...Don't wear elbow pads, though. No one wears those. There's literally one nerve ending per elbow. Take some sandpaper to one, see if you can feel it! ... Couldn't, could you!) All the while my shoulder and head were diving straight for the ground as though they were the only parts of my body drawn to it.

And then I was in the perfect middle of the street, on my bleeding, engraveled cheek and jammed shoulder, the rest of me in the air as though suspended by piano wire, my sight line perfectly aligned with the street's yellow dashes.

...Before I could think about how I was going to get my shoulder pulled back out and into its former, upright and locked position, and if I would ever be pretty again, I was in the air, my torso facing the ledge I had jumped from, centered directly above the road where my red blood was smeared on a yellow-paint lane marker.

Having done a mute 360 with similar speed and a similar amount of air many times before, muscle memory carried me through the rest of the rotation, and I had enough speed to clear the curb on the other side's sidewalk. I rolled away, wiping pebbles and grit out of my cheek with my left hand.

But I still think the fall must have looked a lot more cool than nailing the trick did.

And I have a hundred stories like that. So does every skater who's been pretty decent.

Taking a dive face-first into the road from more than ten feet (for my face it was seven plus about seven (my height, plus height of small jump = fourteen feet) didn't faze me, but fibro has completely shattered me.

What in the flying fuck should doctors learn from this?

To give me a lollipop and send me on my merry way.

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06 February, 2008


Since doctors are loathe to prescribe narcotic medications to fibromyalgians, I'd like to know if anyone gets theirs from overseas, or from Canada, Mexico, American Samoa, so forth through the mail.

As followers of this blog (all the best to you, you beautiful bastards) know, I believe the treatment for fibro should be simple: trigger-point injections performed by a very skilled and knowledgeable doctor, plus continuous opioid analgesic therapy. That's it.

I came to the last deduction (that COAT should be about 50 percent of the treatment) by reasoning that pain should be treated with painkillers (see "I HATE THE WORLD SLIGHTLY LESS!").

Did I just blow your mind? If so, you must be a doctor.

If someone theoretically knows a theoretical Web site that theoretically may be super-reliable and hopefully super-cheap and hopefully has a good supply of oxycodone in various (theoretical) permutations, please post it in Comments. Why oxycodone? Because it's, theoretically, the best pain reliever for at least one person's fibro pain.

So, for the good of all, please write about any theoretical research you've done or theoretical experience you've theoretically had. This could be done both anonymously and theoretically. But for the comment to actually appear, I suppose the comment itself would have to be more than theoretical. Theoretically.

Theoretical love and kittens to all of you

PS: I can't do any theoretical research myself because I have (unfortunately, not theoretically at all) spent every one of my pennies waiting for the Social Security Administration to act on my disability claim. (I leech off my parents, who wouldn't pay for any of these theoretical mailings. Which is strange... I would finally stop being such an asshole, completely theoretically, if my fibro was treated adequately...)

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This post is going to be short because I'm on 100mg Demerol IM and want to enjoy it with frivolity.

[Pain right now: 2/10

Anxiety right now: 2/10

Tomorrow: Fuck tomorrow.]

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05 February, 2008


It turns out that my visit to my new shrink -- actually, he wasn't a shrink, but a psychologist -- was quite productive. He agreed that I need to be on a pain management protocol.

Pills, people. Stronger than Vicodin.

He agrees I need to enter the land of as-pain-free-as-possible.

And I love him.

The coolest moment was this:

I came off a rant, describing my pain, the red-hot pokers jabbed halfway through my torso from the back, six on each side of my spine, the constant marathoner's lactic acid burn in my legs, the aching in my arms that makes them feel swelled like spinached Popeye, the always-on migraine (and its friends nausea, phono- and photophobia), and he said

"Don't take this the wrong way, and don't get mad... but I really wouldn't want to be you.

"To the extent I can imagine what it must be like to be you, I wouldn't trade places with you for anything. You have to go to U of M, to Detroit, to Chicago... You have to get on a program that Dr 9 can stick to..."

I thanked him because he was the only one who hadn't condescended to me after my pain-description tirade. "Oh my god I'm so sorry. Try to stay positive." Christ. Let me douse you with gasoline, light a match and you try to fucking stay positive.

The good doctor is going to stay (very) late to dictate a message to Dr 9 to tell him that I need to get on an extremely aggressive pain management protocol. And he's going to follow up.

He cares.

Caring is creepy for a doctor to do in this purgatory of a town.

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1) Patient has pain that curtails his sleep.

2) His sleep is shortened because he cannot bear to be on his back or sides for more than four to five hours.

Action: Prescribe tizanidine for headaches.

3) Patient continues to have pain that curtails his sleep for same reason as above.

Action: Increase dose of tizanidine for headaches.


1) Patient experiences headache-pain relief from trigger-point injections given during the week, plus GI cocktails given for nausea, plus Maxalt 20mg.

2) Patient given prescription for 20 Vicodin tablets to help him w/ pain control over the weekend, when patient is unable to get TP injections, GI cocktails, limited Maxalt.

3) Patient takes Vicodin tablets every hour for pain relief.

4) Patient does not achieve adequate pain relief from Vicodin.

Action: Patient is prescribed Ultram, a weaker painkiller, for pain control on the weekend.


The first little tale shows us that all pain but patient's headache pain is being ignored at the cost of patient's sleep quality and possible sanity.

The second tale shows us that the fucking gods must be fucking crazy.

Vicodin, at very high doses, does not give patient adequate pain relief (not even close, while endangering his liver w/ all the APAP aka Tylenol).

So patient is prescribed Ultram, a WEAKER pain reliever.

How is patient to achieve sufficient pain relief with a medicine that is weaker than Vicodin which is, itself, insufficient?


Why is the treatment of fibro for patients to tough it out and to grin and bear it?

Why isn't the treatment for pain painkillers?

Jesus... A retarded chimp could come up with the solution to this one...

Are fibromyalgians denied painkillers simply because they need narcotics, while others can get by on Aleve, Advil, Tylenol, etc.?

(Hint: The answer is yes.)

Programming note: Today I go to my new shrink, who I wager will make it his job to "cure" me of the above way of thinking.

He's welcome to try.


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04 February, 2008



Coming out of the doctor's office feeling worse than you did when you came in is something fibromyalgians do maybe even half the time. How sick is that?

Happened to me today. Walked in with a headache that rated a 7/10. Was given anti-emetic and Maxalt plus trigger-point injections. My leg (left) had been going numb on me again. Feeling returned. Much rejoicing.

Then full-on migraine struck. half-hour later, more Maxalt. Toradol injected IM (or it could have been cat piss for all the good it did or ever does). Nothing more given. No relief. Other means sought...

Doctor now suspicious of me because I told him that, because I haven't slept more than five hours in one night since I've been off Percocet, I took a Vicodin last Thursday night to see if it would help me sleep longer. Then I took two Friday night to see if that would work. (No.) I wake up so early because I can't stand the agony of being on my back and sides any longer than a few hours and have to get onto my feet.

The only parts of my body that aren't constant pain-producers are the bottoms of my feet, my palms, my balls, and my dick. Let's hope the feet-bottoms stay painless, because I'm not learning how to balance on my hands, let alone my dick -- how could I maintain an erection that way anyway? -- nor am I about to hang myself from some ceiling by my scrotum. If I got off on that having fibro wouldn't be a problem...

But Dr 9 seemed fraught with concern. Wrinkled brow and everything. Fraught. (Who uses that word?) I put him in this state when I told him the above, plus the fact that, when the Maxalt I was given stopped working Saturday afternoon, I started popping Vicodin every hour nonstop.

And why not? Was I not in pain? Was it not lessening that pain? And if it had completely masked that pain, wouldn't I have stopped taking it? (Yes. But Vicodin isn't Percocet, and Percocet isn't IM Demerol, and even IM Demerol isn't up to the task.)

This worried my doctor. Obviously, he's dealing with a patient who will take a lot of Vicodin. And based on my history, it's because I'm in a lot of pain.

Therefore, there's nothing to do but stop prescribing me Vicodin on the weekends, get me in to physical therapy, and pump me full of IV magnesium tomorrow.

Jesus Fucking Christ I was born in an insane asylum.

If anyone sees a big guy who never has spoken, as far as you know, point him my way, please.

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02 February, 2008


...And it isn't even a list.

Today I took the usual stuff, plus two 10mg Maxalt this morning, plus four Vicodin spaced throughout the day.

There you have it.

Thursday I took one Abilify and that's enough. I was groggy and lethargic almost all yesterday... There was no fun involved. Which makes it not worth taking. That, and it was prescribed by a doc I wouldn't trust to be right about the current weather, let alone how to treat any given psychiatric disorder I have, let alone with an antipsychotic.

[Pain: 5/10. Tolerable, for me (wuss). Could I walk more than five blocks? No. Could I lift more than 10 pounds? No. And not strictly because I'm a pussy... One person's "tolerable" and all that...

Anxiety: 6.5/10. Not bad for me, but you'd be on your way to an ER, thinking you were having a heart attack. Wuss. (Said with affection. I wish I was like you...)]

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