THE FIBROMYALGIAN

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http://fibromyalgian.blogspot.com

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!!!!!

No new posts will be found here as of March 2 — after this one. Please visit my Blogspot site for the latest in sardonic, dark humor regarding a chronic, incurable disorder!

Love and kittens always

–Calvin Bandini

MIRAPEX: A CURE FOR ALCOHOLISM!

Posted March 2, 2008 by

I used to have such a thirst for alcohol that I would get drunk on Thursdays and always be horribly hungover at work on Fridays because I had stayed up until the wee hours the night before because it took me quite a while to get drunk.

In my search for a way to ease my fibro I ended up on Mirapex, and about a month into taking mega-doses I no longer wanted to drink.

…Well, I wouldn’t be shaking for 5:30 to come on Fridays, anyway.

Today I have swallowed about three liters of wine just to see if I can, in fact, get drunk. It would seem I cannot. …And I’m not even weird on it, though it’s matched with 50mg oxycodone (through Percocet) and 4mg Klonopin.

I didn’t sign up for this… Apparently Mirapex changed my brain and did so, perhaps, for the rest of my life. I haven’t taken the stuff for months, but still have no thirst for the drink. Last week when I was in such pain that all I wanted to do was die I couldn’t even make myself swallow enough vodka to make a difference. Maybe there isn’t an amount of vodka that would make a difference.

I simply slept well the night I drank vodka… And woke the next to find two fingers in the bottom of a fifth.

Strange thoughts on this strange day…

…If you think you have a problem with the bottle, ask your doc about Mirapex. I believe it’s supposed to allow your brain to produce more dopamine… Or somehow make more dopamine available to your dope-loving brain. Either/or/and.

All I have now is a headache because it’s been a while since I’ve taken a Percocet, and I’m going to have to take 50mg of Trazodone and a Sonata to get to sleep just so I can get the sleeping over with, it can be another day, and I can have more Percocet… I only get five a day and make myself stick to it.

…But what about Tylenol etc and liver damage (I take five Percs a day, 10mg oxycodone/325mg APAP)? Three-twenty-and-five multiplied by five is 1,625mg of Tylenol. Four grams is an overdose. And the wine must be taxing my liver like Paul did Jews before he had a seizure and founded christianity.

…I’ve been taking a multivitamin and a strong B-complex tab ever since I was put on legal dopes at eighteen years old, and I get a liver enzyme test at least once a year, and my largest internal organ is just fine. Pristine. Begging for more.

And now I have pared down my drug diet to three meds I know and love, which should save my delicious liver some trouble: I take only Prozac, Klonopin and Percocet. I need nothing else (well, except for Trazodone and Sonata so I can get to sleep)… In fact, if Prozac wasn’t available in a generic formulation, I’d drop that too. But the drug reminds me of my college years, is relatively cheap, and so it stays.

…When my rationality and my sentimentality collide, the latter wins almost every time.

…I will forever keep a quilt that was my older brother’s that has bled all its stuffing and a brain that spews dopamine like a busted fire hydrant… But I’m unable to splash in the middle of the road in the late-July of a humid Washington D.C.

I’m unable to get drunk.

February 29, 2008

AN ANVIL HAS BEEN DROPPED ON MY NUTS (PLUS TURING MACHINE: DON'T MIND IF I DON'T)!

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!


Posted by DBM at 3:43 PM 0 comments Links to this post

February 28, 2008
LACK OF HATE = WRITER'S BLOCK?(!)

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.]

Posted by DBM at 5:31 PM 1 comments Links to this post


February 27, 2008
REASON TO LIVE? YOU KNOW HOW TO SPELL IT!

P-E-R-C-O-C-E-T!

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.

CHRONIC OPIOID ANALGESIC THERAPY!

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.)]

Posted by DBM at 4:38 PM 1 comments Links to this post


February 25, 2008
TO DR 9'S STAND-IN:

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.

Posted by DBM at 8:24 AM 0 comments Links to this post


February 22, 2008
F---------------------------K!!!!!!!!!!!!!

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 filet 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.

Enjoy!:

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.

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.]

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 *** 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 when it pushes 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?

Huh...

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 learned about narcs in the years since these docs learnified themselves?

Well, for starters, people in chronic pain don't develop tolerance.

I was talking with one doctor today:

“Well you're so young and 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... 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.

“No.”

“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...

Nothing is black and white, and if this is a racist thing you fucking prick...

No, of course that isn't it.

This 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 the 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, which I used to think 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 thy 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 transistor-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 a lot 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?!"

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 hear 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 are 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!).

February 21, 2008
I'M OFF TO SEE THE WIZARDS!

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.

Posted by DBM at 9:54 AM 0 comments Links to this post


February 19, 2008
PAIN, ANXIETY OFF THE CHARTS!

"Today I really struggle 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...


Posted by DBM at 10:58 AM 0 comments Links to this post


February 18, 2008
I'M HIBERNATING!

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.

Posted by DBM at 4:23 PM 0 comments Links to this post


February 17, 2008
THIS FRIDAY: THE BEGINNING OF CHRONIC OPIOID ANALGESIC THERAPY?(!)

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!]

Posted by DBM at 1:23 PM 0 comments Links to this post

 
February 16, 2008
NON SEQUITUR: TORTOISE!

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.



February 15, 2008
FEEL MY PAIN... SORTA!

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.]


Posted by DBM at 2:07 PM 0 comments Links to this post



February 14, 2008
THE WAR CONTINUES ANOTHER DAY ON ANOTHER FRONT!

...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.]

Posted by DBM at 7:32 PM 0 comments Links to this post



February 13, 2008
WAIT UNTIL SPRING, BANDINI!

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...

Posted by DBM at 2:47 PM 0 comments Links to this post


STUDY: PEOPLE WITH CHRONIC PAIN DON'T GET ADDICTED & CAN AVOID TOLERANCE TO NARCS!

Please see this abstract:

http://www.pain.com/sections/pain_resources/library/abstract.cfm?ID=3403&next_page=1&startrec=1&RecordDisplays=20&Search_phrase=opioid%20substitution%20to%20improve

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."



February 11, 2008
THE NO-LOGIC ZONE!

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

This should be short because I am damn tired today.

Why?

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.


February 10, 2008
WHAT THE FUCK HAVE I WOKEN UP NEXT TO?

.
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.]
.



February 8, 2008
SMILE THAT BRUISE UPSIDE DOWN!

.
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.

***

NOTE:

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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A USE FOR E-STIM THAT DOESN'T INVOLVE KINKY SEX!

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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."

"OK."

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.

Waiting.

[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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February 7, 2008
SEE THE MAGICAL HORSE PUSH THE MAGICAL CART!

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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 acidlactic 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 was seeing crimson projected onto 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 seen 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 of overcoming 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, hand on 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 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 only gave him a dollar 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, diet of mainly steamed vegetables, and the look his dad gave him.

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 she'd 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 where it would have projected into the road, which ran perpendicular to it. The ledge was seven feet high where it was closest to the 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 20mph. The ledge was just wide enough for my skates if I kept one skate 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 to the ledge, 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. My right leg slipped, but 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! They can't all be 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!) It became apparent that 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. I rolled away, wiping tiny pebbles out of my cheek with my left hand.
But I still think the fall was cooler than nailing the trick.

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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February 6, 2008
THOUGHTCRIME!

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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...)

Since I brought up how goddam broke I am, this could be a good time for me to plead with you to please please please click through my advertisers on your left! Please!

(Now this shill needs a scalding shower. I sold out so quickly!...)




I'M GONNA TRY FOR THE KINGDOM IF I CAN!

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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.]



February 5, 2008
I HATE THE WORLD SLIGHTLY LESS!

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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.

EVEN MORE ACTION!:

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.

WHAT HAVE WE LEARNED?

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?

AND NOW FOR A NICE RANT!:

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.
[Pain and anxiety: IT'S PEOPLE! PAIN AND ANXIETY IS PEOPLE!]




February 4, 2008
CONFESSIONS OF A MAN INSANE ENOUGH TO LIVE WITH BEASTS!

http://www.amazon.com/s/ref=nb_ss_gw/104-7667416-3791943?url=search-alias%3Daps&field-keywords=CONFESSIONS+OF+A+MAN+INSANE+ENOUGH+TO+LIVE+WITH+BEASTS&x=0&y=0

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.


February 2, 2008
LAST DRUG LISTING!:

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...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 ***... 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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THE BEST PART OF WAKING UP!

My parents wake up at almost exactly 10 and 10:30 every Saturday.

...Or, I should say, my Mom comes downstairs every Saturday to make coffee and my Dad wakes up to its aroma and follows it downstairs.

I just made coffee. And not because I'm a bastard, but because I just really wanted some.

Though it will be interesting to see if this throws off at least my Dad's entire day.
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February 1, 2008
FUCK LYRICA!

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It will make you fat and you'll still feel like shit. Very fucking fat.

Also motherfuck that goddam commercial for the fucking pill, fuck everyone involved in its production, fuck everyone who thought it was decent enough to put on national air, and for good measure fuck the actress and her weepy-ass voice and especially fuck the whole pain diary shtick. That's sorta my thing.

(I felt I had to comment eventually.)
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I'M GUANO CRAZY INSANE!

I was indeed prescribed Abilify because of my flat affect. (Which was due to me hating the good doctor like I hate pineapple on pizza and knowing he wasn't going to do anything good on my behalf no matter what I did.)

Turns out the stuff recently won FDA approval to be prescribed for major depression.

Which I wouldn't have -- strike that. Which I don't believe I have. I don't think I have depression at all, in fact. I think I'm responding as a normal person would when their life has been crushed and their every waking hour is agony. It doesn't get me down, it pisses me off, and it pisses me off when people stand in my way as I try to get out of pain and/or anxiety.

And my former -- as of Wednesday -- shrink (I call him Dr. Douchebag. And none of his names begins with "d." That's how rotten a douchebag he is) was in my way. Not writing enough Klonopin, the only thing that curbs my anxiety. Perhaps also deaf and without the ability to read lips... I never really tested that one.

But Abilify is also FDA-certified-guaranteed-fresh by the FDA for the treatment of schizophrenia and bipolar disorder. And from what I've read this stuff should be one wacky side-effect ride.

I'll try anything for about a week... Let's see where this rabbit hole takes us.




January 31, 2008
DRUGS DRUGS DRUGS DRUGS DRUGS!

swallowed, morning
-2mg Klonopin
-300mg Lyrica
-40mg Prozac
-18.7mg Effexor
-50mg Topamax

At the doctor's office!:
swallowed
anti-emetic cocktail

dissolved on tongue, swished around mouth and then swallowed
Maxalt, 10mg
Maxalt, 10mg, headache relieved to 4/10

trigger points injected
-back, right side spine, marcaine (~2" above yesterday's)
-back, left side spine, marcaine (~2" above yesterday's)

swallowed, mid-day
-2mg Klonopin
-Vicodin (7.5mg hydrocodone/750mg APAP) X2

going to be swallowed, night
-2mg Klonopin
-300mg Lyrica
-40mg Prozac
-18.7mg Effexor
-50mg Topamax
-3mg Zanaflex
-10mg Abilify

I don't know what Abilify is. And I hate that, because I pride myself on being a walking pharmaceutical encyclopedia (Google after this). Here is all I know:

I walked into my shrink's office yesterday.

"How are you Mr Macklin."

"Well, I've felt like I've been having a constant heart attack since you both took me off Effexor and lowered my Klonopin dose from six to four milligrams."

"Do you feel anxious right now?" Barely a question, but more than a weird statement (like the above how-do-you-do). "Like you are having a heart attack?" (I don't write stilted dialogue. Guy just didn't use contractions. He spoke in a not-unpleasant, clipped, second-generation American Indian dialect. Which I'm trying to represent. Bonus: I speak just as though I am horribly pretentious.)

"Yes. I always feel that way now." But my detached attitude and learned-helplessness-colorless voice wasn't selling it. Flat affect.

"How is your sleep?"

"I only get four hours a night. Four and a half if I'm lucky. The pain and whole feeling-like-you-re-going-to-die-thing is a sweet alarm clock."

"I'll write you a script for Abilify. It should help you sleep. If it knocks you out the first night and you feel groggy when you wake up, just break the pill in half the second night."

He was writing his scripts, his mind was set, the session was over.

So I grabbed the paper entitling me to a month's supply of what Dr. 9 described today as an anti-psychotic of sorts, 4mg Klonopin per day, and 40mg Prozac per day.

There goes the shrink. I won't see that small man, not even for three minutes, again. Not if I play my cards right.

***
I hate that I can be prescribed what could be, for all I know, Super-Thorazine, in a three-minute session. Based on the fact I haven't been sleeping much? Maybe I was just on a meth binge. Or was it my flat affect?

[Pain, head: 4/10; thorax, 8/10; limbs, 6/10.Anxiety: Mind your own business on this one thing this one time, would you?]

PS: Vicodin X3 now.
.



January 30, 2008
I'M PHONING IT IN THIS WEEK!

.
I'M EVEN MAKING THIS ACKNOWLEDGEMENT HALF-ASSED!
.


DRUGS TAKEN VARIOUS WAYS!:

.

swallowed, morning
-2mg Klonopin
-300mg Lyrica
-40mg Prozac
-18.7mg Effexor
-50mg Topamax

At the doctor's office!:
swallowed
anti-emitic cocktail (no alcohol. How can something be called a cocktail if there is no booze in it? Especially if it tastes like charcoal, then leaves your tongue, mouth and throat numb?)

dissolved on tongue, swished around mouth and then swallowed
Maxalt, unknown dosage
Maxalt, unknown dosage (second time, charm -- headache mostly gone -- 4/10)

injected, trigger points
-back, right side spine, marcaine
-back, left side spine, marcaine

injected, intramuscularly
-depo-medrol, right "hip" (ass-cheek)

swallowed, mid-day
-2mg Klonopin

going to be swallowed, night
-.5mg Mirapex
-18.7mg Effexor
-50mg Topamax
(I'm sure I'm leaving something out... I just don't feel up to checking my night-time med-sched. [sorry for the rhyme.] It's been a long day... Blowing snow, ice everywhere,... Driving -- being driven about 100 miles from clinic to shrink to psychologist... I hate Wednesdays... But I love my psychologist. He has a bumper sticker on his Jeep: "When the going gets weird the weird turn pro." HST)

[Pain: I have that.

Anxiety: I have that too.]
.


January 29, 2008
MY DRUG DIET, STARRING THE INJECTABLES!:

.
MONDAY!:
swallowed, morning
-2mg Klonopin
-300mg Lyrica
-40mg Prozac
-18.7mg Effexor
-50mg Topamax

injected, trigger points
-shoulder, right, X2, marcaine
-shoulder, left, marcaine

swallowed, mid-day
-2mg Klonopin

swallowed, night
-.5mg Mirapex
-18.7mg Effexor
-50mg Topamax

Tuesday!:
swallowed, morning
-2mg Klonopin
-300mg Lyrica
-40mg Prozac
-18.7mg Effexor
-50mg Topamax

injected, trigger points
-shoulder, right, marcaine
-shoulder, left, marcaine
-skull, base, right, marcaine
-skull, base, left, marcaine

injected, intramuscularly
-Toradol, left "hip" (ass-cheek)
-some anti-emetic, right "hip" (ass-cheek)
-eventually a drug that sounded like "new-caine." Described as "like Demerol, but without the unpleasant side-effects."

swallowed, mid-day
-2mg Klonopin

swallowed, night
-.5mg Mirapex
-18.7mg Effexor
-50mg Topamax

I was at the clinic for three hours this morning (from nine to twelve, and exactly. I mean spot-on), with a headache I knew would take a lot of work. Also I was incredibly nauseated. So much so that I couldn't eat my cereal this morning. It's always a struggle to get food down in the morning, but today... nothing doing. Disgustingly, the Honey-Nut Cheerios actually slid down my tongue and back into the bowl. That nauseated me all the more.

Anyway, I don't feel like writing because of the "new-caine." I feel like napping -- only eight hours of sleep between the last two nights.

I should say that, with all the needlepoint Dr. 9 and 1 did for me today, Humpty is put back together fairly well...

[Pain, anxiety, overall: 4/10.

...Until tomorrow. I fall of the wall in my sleep.

And jesus christ, at times just how self-absorbed an activity this is hits me like we imagine olde-time doctors slapped newborn babies' asses...

Publish!]
.



January 26, 2008
THIS GUY IS VERY FUNNY (OR, WELCOME BACK VICODIN)!

.
This Brit living in Australia reviews video games in a very gonzo way and it's fall-on-your-funny bone hilarious even if you're not a nerd:




link:

http://www.escapistmagazine.com/articles/view/editorials/zeropunctuation/2048-Zero-Punctuation-Manhunt

Huzzah and kudos, Yahtzee!

[Pain, overall: 7/10. Was given Vicodin to tide me over until Monday, when I can once again become my doctor's pin cushion. And that's not a complaint, that's a statement of fact. And the fact is one that makes me overjoyed.

And I used to be afraid of needles. Very afraid. Ever since I was about eight and a douchebag doctor tried to give me a spinal tap. He didn't use any anesthetic -- not even local -- simply had me tuck forward as I sat on the paper on the half-table-bed-thing and then there was JAB and SEARCH under my skin and through my vertebrae. I recall my hand going completely numb at one point, and wondering if I had become partially paralyzed at that point.

And, being a kid, I was crying, howling from the pain and the terror I was feeling while the doctor tried and tried again before giving up.

The procedure eventually was finished after my parents calmed me down and I was sedated. My mom held me as I cried for a half-hour, as I was still feeling the needle crawl everywhere under my skin, mechanical, lifeless steel, foreign, an intruder, no business among my living blood and through my bone and against my spine oh my god he almost paralyzed me!

I can still feel where the steroid and Toradol (I think I mistook it for Tagretol in a past post -- which I may have gone back and corrected...) needles went in my hips a week-and-a-half ago. The fucking needles.

But I love the feeling of my skin giving way -- a small depression, a dimple forming around the needle's odd tip that seems to swirl upward, the diameter of a sewing needle that would be impossible to thread -- the instant of clear and bright pain as the needle goes through skin and into muscle, straight into a a ball of pain causing more, the skin behind my closed eyes becoming brighter and clearer, white and translucent and I can almost see the end of the rainbow as my head begins to clear and I can open my eyes and breathe and everything looks different and the world has changed because everything is softer, the hard edges are gone -- everything doesn’t exist simply to injure me through the fact of its existence, the fact I have to see it or try to close my eyes to not see it or be somewhere else to not see it or have to deal with being that batshit insane crazy in pain because the world is kind now and soft and warm as the lighting on a Barbra Walters Special.

...That is to say, I am afraid of needles as a general rule, but I am less-than-afraid of trigger point injections.

Anxiety: 7/10. I am on Vicodin and Klonopin. On considerable amounts of Vicodin and Klonopin.]
.


January 23, 2008
too happy to write

.
various trigger points are being injected in my person on a daily basis. it's been found that injecting the muscle around my temporomandibular joints results in headache pain reduction on a massive scale -- from 10/10 to 3/10: demerol-quality (it's improved since yesterday -- the left side of my face was done).

so i can't write because i'm not pissed.

but i don't expect it to last...
.


January 22, 2008
CHOKE ON MY ABRASIVE COMMENTARY!

.
The following is what I wrote in response to another blogger's post that referred readers to a book that boasted a "natural cure" for fibromyalgia. Goddam it I cannot fucking stand books that claim they have the cure.

Um... usually we know what causes something before we know how to fix it. And to date we do not know what causes fibro.

And, regardless, we simply do not have a cure for fibro!

Anyway, enjoy the below. With any luck I've pissed off more than a few people with it.:

I just scanned the site you pointed people to, and it looks like a total croc.

By definition, fibromyalgia has no cure. It's lifelong, debilitating, and INcurable. So there certainly is no "natural cure" for it.

I'm sick of books saying they have cures for fibro. It gives people false hope, when they should be bugging the crap out of their doctors for effective treatments to MANAGE their pain.

My doctor does trigger-point injections (and my head is so much better), 300 of Lyrica, .5 of Mirapex for my jimmy legs (aka RLS), 4 mg Klonopin for anxiety and muscle spasms, working up to 60 mg Cymbalta for depression and possible pain relief, 40 mg Prozac for same, and steroid and pain-relieving intramuscular injections whenever I see him (daily to every other day).

So, you see, fibro is complex, and requires complex treatment.

And if your fibro can or has been cured, baby, you didn't freaking have it and you're harming those of us who really do. You're the people with relatively minor aches and pains that call what you have fibro, then find a cure in a book.

If you have been cured, and genuinely had fibro, you must have found the fountain of youth. I'm sure it wasn't in Florida, as many have thought it would be, since that's where Americans go to die...

Please tell the rest of us where it is!

[Pain: 5/10, head. Today my doctor and I made the breakthrough that my temporomandibular joints are causing the lion's share of my head pain. He only injected the right TMJ -- or, rather, the knotted muscle surrounding it -- because I already had had my 24 hours' worth of marcaine injected into my shoulders' trigger points. So he used lidocaine and depo-medrol on the right side of my face and my jaw relaxed and my headache (mostly) dissipated like London fog on a hot afternoon.

I'm going in tomorrow, too. My doc is injecting both sides, and I could not be more excited to get stabbed in the face repeatedly. It is going to be the best thing to happen to me in years. How fucking odd!

But it is going to be just fucking fantastic...

Pain, body: 8/10.

Anxiety: 7/10. (The shots helped my anxiety, too! And made my dick bigger!)]

.


January 21, 2008
DEMEROL!

.
Well, I've reached the point where I feel compelled to post regularly. Which is too bad because earlier today I was given a 100 mgIM injection of Demerol, and so I am sluggish and apathetic.

But a 3/10 on the pain scale!

My pain was intolerable over the weekend. To get to sleep Saturday I had to hit myself on my thigh with my cane as hard as I could a few times. I experienced a rush of endorphins, and the pain in my head was outdone long enough for me to get to sleep.

Then I suffered through Sunday, basically counting down the minutes until today, staring at every clock in the house, my head swelled as big as the Hindenburg. I made it... After having to knock myself out at two o'clock in the morning with 400 mg Trazodone, 10 mg Sonata, 8mg Remeron. I was awakened at seven thirty, with my head about to ignite and the rest of me as stiff as a two-by-four. I walked by swinging my legs in arcs, unable to bend my knees.

But I am lucky in many ways. The primary one being that my mother works at the clinic I go to. She was able to get me an appointment with my doctor, who I saw at about nine thirty.

I was given trigger-point injections in my shoulders, which is routine. Normally they relieve my headache substantially -- if only for one to two days. This time they only relaxed my shoulders.

I was then injected with Tegretol (I believe it was) in my left hip, which was supposed to reduce my pain. Still nothing.

Then I was given a quick-dissolve tab of Maxalt, which I gathered is a migraine-killer. It made mine worse.

Finally, about one-and-a-half hours after I was brought into the office, I was asked if I drove myself to the clinic -- no -- and if I was allergic to any medication, including Demerol. Definitely not.

And so I was injected with 100 mg of Demerol, intramuscular into my right hip. My Dad drove me home, I played Mario on our Wii for an hour, then fell asleep while watching Inland Empire (David Lynch). I awoke just in time for dinner, then felt compelled to post this.

And I realize this is as dry and flavorless as a plastic-spoonful of desert air on a windless day. But I felt I should use this space to pledge my undying love to whoever discovered/first synthesized Demerol. I can stand being alive today.

And it's unfortunate that that's the best that can be done for me at this point... But I suppose I must have patience.

Actually, I should have written that it would be to my benefit if I could have patience. I seem to be hard-wired in such a way that does not allow me to suffer waiting. For anything. Especially relief from pain that makes me wish I could die from it.

And so ug. I'll end this post here. Give it a nice, big shot of Demerol to put it to sleep...

Stay tuned for something worth reading!

[Pain and anxiety: 3/10. Demerol is magic.]
.



January 18, 2008
AN OPEN LETTER!:

"The first thing they told us in medical school is that no one has ever died from pain, but plenty of physicians have had their careers destroyed trying to help people who are in pain."
--Comment from an emergency room physician requesting anonymity (2001) (1)

I am in pain. Incredible pain -- with an 8/10 being my baseline. It is agony that makes me think of suicide daily, as any sane person would (and, as any sane person might, not act on these thoughts).

You know that the marcaine injections provide me with some headache relief, but leave the rest of me wracked with pain. My head is almost satisfactorily, but certainly not completely, less-painful as a result of the injections...

So, on my best days, my head rates a 5/10 on the pain scale, the rest of me 8/10.

It is likely that it will take a year to two years for the marcaine injections to be given to all of my trigger points, resulting in my having pain that rates a 5/10. A five out of ten. It will be a mammoth improvement if it can be done and I will praise whoever invented marcaine from the highest mountain... But my pain will still be debilitating. Horrible. Nightmarish. I likely will still have to shun light and sound and walk with a cane. I still will be unable to enjoy life.

And doctors will call it the best they can do, pat themselves on the back for another miracle accomplished and flap their angels' wings back to heaven.

I have been given naproxen for pain and inflammation. This is a cruel and sad joke, as well as an insult I do not take lightly (esp. since anyone treating fibro should know we do not have damned inflammation of anything!).

However, if the naproxen masked my pain, it would be fine for me to take it daily for the rest of my life. Countless scripts would be written, and doctor/patient/pink elephants would be happy.
Unfortunately, my pain can only be controlled by the addition of a narcotic to the naproxen (used for this example -- I'm unsure whether there is an actual narcotic med. that contains naproxen).

Why is it fine for me to take naproxen for the rest of what would be an intolerable existence, but not fine for me to take a medication that will do what the naproxen is supposed to do?

Far too many doctors have said that, if I start taking narcotics at 29, I will develop a massive tolerance to them well before I die -- a tolerance that will make them unable to prescribe any more, and therefore leave me with no way to treat my pain. Therefore, I could suffer for decades.

This is untrue and an insult to the intelligence of anyone who hears it. Any person with Internet access can discover this for him-/herself the following: A miniscule amount of naloxone or naltrexone combined or taken with each narcotic dose prevents tolerance. Futher, Proglumide can prevent tolerance to any opioid altogether and, if tolerance already has presented, proglumide can reverse it. (1) Even more, simply switching narcotics, or taking a break from them for a short time, can be helpful.

Doctors have a range of options they are simply unwilling to excersize.

The above shows that one can take an opioid/narcotic medication indefinitely, and that it will be effective indefinitely.

My pain is going to last the rest of my life. It is, by the very definition of fibromyalgia, debilitating, lifelong and incurable.

But it can be effectively managed for the rest of my life, and only managed with narcotic medication.

Why should I be denied this medication, but allowed a laughably ineffective one?

What makes my pain, which is systemic, not worthy of treatment, while anyone with a headache can mask theirs with their choice of OTC meds?

Please explain the difference between me managing pain with a medication containing a narcotic and a person managing arthritis with Aleve. (And no, I do not experience euphoria from narcotics. Since I never have been on the proper narcotic at the proper dose, I've never felt not-pain. For years. Years.)

Specifically, riddle me why the person in this example, who has arthritis, is able/allowed to get total relief from her (I'm imagining a woman) pain, while I must suffer what feels like the worst case of arthritis in all parts of my body (fibro)?

Why can someone with arthritis get relief every day, while a fibro patient who rates 8/10 on a pain scale at his best not get similar relief? Why is the lesser pain, in effect, treated as the more important?

Why are people who experience pain that is, at worst, a 2/10 allowed to mask that pain, but a person who rates 8/10 at his best is not?

It has been said that prescribing me a narcotic medication will result in rebound pain. However, I will not experience this rebound pain as long as I take the medication. Since I will be in this pain my entire life, I never will stop taking this medication.

Which leads us to the logical conclusion that I would never experience rebound pain.
(This is the lamest, stupidest, most unfathomable reason I have been given by doctors who choose not to prescribe the only type of medication that can manage my pain.)

It is common knowledge that opiates do not adequately treat the pain experienced by a fibomyalgian. However, this is not so in my case. And I wonder if what has become common knowledge is simply a result of hundreds of pain doctors (I didn't write "pain management doctors" on purpose) using this supposed reason as an excuse, a way to avoid writing scripts for narcotics. I venture that all fibro patients would respond quite well to them, and ask to be proven wrong.

If I am wrong because the meds can never take a fibro patient's pain away completely, tell me what freaking can.

Onward: I have been on opioid-containing medication in the past, and my pain was reduced. Therefore, it is reasonable to assume that a dose of a controlled-release narcotic coupled with, hopefully, Proglumide (2) would control my pain on a daily basis and could be taken as needed. Should my pain subside -- or as it subsides due to the marcaine injections -- I will simply take, and be prescribed, less.

Also, a doctor already came to the conclusion that I should be on pain management medication, that it is my only hope to live a tolerable existence (the majority of people get to do a lot better than merely tolerable...): Dr. X. The doctor who has seen me, by far, for the longest time compared to any doctor (save my former psychiatrist) and knows me and my history with fibro better than anyone. And the doctor who kept me alive with Percocet while trying every single other medication available to him.

Given these facts, there must be justification for keeping me in pain. I ask, To what end?

Is it not morally/ethically reprehensible for me to be denied the pain relief others enjoy from Tylenol or Advil, simply because their medication needn't contain something synthesized from thebaine or the opium poppy?

Also, please be aware that the national mood toward narcotic pain relievers changed when the GW Bush (ptu!) administration took office, and John Ashcroft (my fingers are dirty from writing his name) began his holy war against narcotic medication.

The public was told OxyContin -- coincidentally and amazingly, darkly comical, the medication I believe most likely to benefit me -- was being diverted from patients and being used by the public. It was to be the next scourge: Hillbilly Heroin.

Those who follow the news should know that the public likes a good drug scare every two years or so. (3) Reporters, in this case, wrote of people who live in the Appalachian Mountains -- a minority looked down upon by most everyone else -- sucking the coating off Oxy to take the stuff straight, without the time release feature. It was called Hillbilly Heroin by magazines and newspapers willing to suck a lie's blood to sell their products.

In this manner OxyContin was demonized and its name sullied because stupid, inbred hicks who live in weird mountains and hate the rest of society take it.

Naturally, the above was almost completely a fabrication. Raise your hand if you know an Oxy abuser. And how is an infitesimal percent of Americans being Oxy abusers for a scourge? A plague in pill form indeed.

(Please see this Google search (4) for a taste of the incredible, horrendous crimes perpetrated on patients in extreme pain by Ashcroft's policies.)

Given the above, is it likely that I am being denied narcotic pain medication, at least in part, because of political and societal pressure on doctors not to treat patients by using narcotics?

Finally, my behaviors suggest those of an insatiable addict. My writing this seems especially desperate. And this is exactly how I should be acting. How would you act, how would any person with sense act, if they were in incredible pain but denied relief from that pain? How many months, years before this person would be driven mad (in every sense of the word) by the fact that effective pain relief is readily available but not prescribed to him? (2)

Justify my not being allowed effective pain management.

Does it turn me into a zombie? Then I'm on the wrong med, the wrong dose or both.
Any negative effects on how I act or am can be dealt with by a doctor skilled in managing pain instead of leaving it be (kinda like the one I'm seeing right now...). Unfortunately, it also takes a doctor who can cowboy the hell up to manage fibro pain aggressively and effectively.

Now please please please: Given all of the above, please describe in detail why my pain should not be managed through narcotic-containing medication. I especially would like an answer to why I can take a pain reliever that doesn't relieve my pain at all, and take it as much as I want, but can take none of a pain reliever that actually relieves my pain.

And I would like to know how anyone can sit by and go about their business, knowing they are next to a person who feels like he has railroad spikes nailed through his spine, who cannot depend on his legs to work, who would spend all his waking hours screaming if only, ironically, his own howls would not increase his pain, et cetera et cetera et cetera.

How is it possible for doctors, friends, family, to remain quiet -- or actively be against -- the only thing that can help a person in the kind of pain that has ruined his entire fucking life?

How is it possible?

(1) http://opioids.com/proglumide/index.html

(2) http://www.eperc.mcw.edu/fastFact/ff_69.htm

(3) http://opioids.com/oxycodone/oxycon.html

(4)http://www.google.com/search?hl=en&rls=com.microsoft%3A*%3AIE-SearchBox&rlz=1I7ADBS&q=%22pain+management%22+ashcroft



January 17, 2008
VISIT THIS WEB SITE!:

http://www.painreliefnetwork.org/

It's good to have an organization that says what I mean -- and is actually trying to improve the lives of people in chronic pain.

Huzzah and kudos, PRN!

January 16, 2008
I'M SO TIRED!

.
Wow do I not feel like writing this today. Hopefully that should make this short and bittersweet chocolate.

It's too bad I suggested in my last post that I would would offer my musings on the difference between going in for marcaine injections at a clinic and being prescribed Percocet. I think I wrote that the former (I'm unable to look up the post. Basement office, no Internet access) allows the doctor to have complete control on how one's health is managed, while giving a patient a bottle of pills gives him/her the freedom to take more or less depending on their daily allotment of pain.

This situation makes me angry.

So I guess that sums it all up nicely. I really didn't need an entirely new post to write that...

Then again, I can't leave it at that: Percocet is a narcotic painkiller. Pain. Killer. And the way doctors act, apparently they are not in the business of getting rid of pain. And actual pain management doctors behave this way (see a previous post for a hilarious anecdote!).

Doctors act like pain is a good thing for fibro patients to have -- and maybe it is diagnostically, but I've already fucking been diagnosed with an incurable lifelong disease! I have fibro and I'm going to be in some degree of misery the rest of my goddam life. I'm 29 and walk with a fucking cane. And I just cannot motherfucking fathom how it is to anyone's benefit that I not get any relief that doesn't come through a fucking needle, held securely in a doctor's hand.

My favorite reason that doctors have given me for not prescribing narcotic pain relievers is: "But it will just mask your pain." Yes. That is exactly, 100 percent, absolutely the point. And you, doc, are so stupid your wife must tie your shoes.

And isn't masking their (your?) pain what non-fibromyalgians are allowed to do with OTC meds? Christ, I'm sorry I can't simply take a Tylenol and be fine; my Tylenol needs oxycodone to come along for the ride. All non-fibros can mask their pain as easy as it is to hate Hitler, but fibromyalgians are talked to as if our pain is worth keeping around, for some reason... Simply because it's always there. I have gathered that we are supposed to get used to it.

Unfortunately, to date no one with fibro aka fibrositis has gotten the fuck used to it.

And doesn't the fact that it's forever make masking it that much more important? Or does the suicide rate among fibros really need to climb higher?

(Aside: Yesterday I read that a study showed fibromyalgians have an increased chance of getting cancer than non-fibros. The kicks in the nuts just keep on a-coming...)

So, apparently masking fibromyalgians' pain has no worth... It's better to work on dealing with the trigger points themselves (with marcaine injections) at a snail's pace. My doctor was proud of saying that in three months the injections should reduce my headache pain 50 percent. At the time it elated me. And I'm still happy and grateful that this (please please) will happen.

But there's a tails to every penny: In three months I may be a 5/10 on the pain scale. In three agonizing, excruciating months my headache may be only half what it is now, which will mean itstill will be classified as debilitating.

And at the rate of 50 percent, three months, only my goddam headache pain, I should be pain free when I'm Methusula.

[Pain, head: 3/10. Pain, everything else: 9/10.

Anxiety: 9/10.

Writing while angry: Try it on a card to your girlfriend!]

January 15, 2008
THE STATE I AM IN!

[Some of you may be fed up with my headers being all caps, all exclamation points, all the time. Which makes me wonder when you lost your lust for life.]

Today I took all my computer and personal effects to the basement and set up an office in what used to be our guest room. Now our guest rooms are the three unoccupied by my parents' three sons (three includes me).

I'd like to think of this place – the basement, with the TV, PS2, TiVO, pool table, countless weird pills, a workroom I will never again enter, storage room, treadmill I've used once and a day bed I use the edge of – as an English basement. The kind of apartment I never could afford, especially if I still lived in DC, and even if I had the job I had to leave.

I'd like to think of this place as an apartment... Of course, reality intrudes and is a bit of a downer.

Begin tangent: As has been taking Lyrica, I realized Sunday. I've been taking it for maybe a year and a half up to now, and am now tapering off it. I'll be done with it altogether in a month. I know taking these red and white capsules must have done something for me when they first kicked in, but I've forgotten what that is and simply can't stand being fat any more. My proper weight is XXX or so, and I passed XXX a while ago.

So as far as I know, at this point, all Lyrica has done is make me gain 70 pounds. And that can't be good for my joint pain.

Get back to the theme introduced in the first paragraph: A for instance would be that, after moving my computer, helping to move a desk and carrying all the electronic devices I've collected over the past five years (packrat) has rendered me almost unable to climb the stairs to the main level. I slouch on the railing while trying to use my cane at the same time, but it still takes me about two minutes to get to the floor above.

Which makes me think: When I wake tomorrow, even more sore than I am right now, I may not be able to make it to the bathroom. I could very well piss my pants, laid out on the top five stairs of a set of twelve.

And the really shitty thing is I would have to simply ooze back down the steps and then wallow in my own piss. Or get nude and stand to avoid getting my urine on any furniture until I could somehow be transferred upstairs. The standing would feel like it was going to kill me due to my legs being made of glued-together plastic Slinkys, and being found that way by my parents would off me for real if I have any luck.

Which I really don't lately.

[Pain: 9.5/10. The marcaine wore off and I would keep myself in a continuous sleep with Trazodones, Rozerems and Sonatas if my parents wouldn't have me committed for doing so.

Which reminds me that I should promise to write, hopefully tomorrow, about why marcaine is OK for me to have injected, while Percocet is not OK for me to posses. Spoiler: It has to do with one being totally controlled by a doctor, and one allowing the patient to have more leeway in the control of his own health care.

Anxiety: 10/10. Goddam I hate my shrink for cutting my Klonopin from 6mg to 4mg. Fucking hate him.]

January 13, 2008
EVERYTHING CAN KISS MY ASS!

The marcaine is wearing off. Could I get these goddam injections the rest of my life every two weeks? Every day, so doctors can do my entire back, starting at my C1 vertebra, giving me the max daily dose of the solution then going on down to my coccyx then starting all over again in an endless cycle? What relief will that provide?

Everything. fucking. wears. off.

And why are doctors fine with injecting me with a sea of marcaine, but not prescribing a mountain of painkillers?

Is it simply that we're a motherfucking Puritan nation that sticks to The Old Ways? If it isn't, I'm in too much goddam pain right now to think of a better way to be angry about this! ...Still, as a former Catholic, I'm used to the formula: Anything that makes you feel good is wrong. So marcaine burns in the muscle, but gives me relief for two days. Two Kadian could, presumably, do that (I've never taken it -- my experience is with oxycodone and Kadian is extended-release morphine), but without the burn.

But pills are wrong. Pills can be diverted from their intended users...

...Which makes me think I should pull a raid on Lummox Life Care (a hospice with an Orwellian name like all of them). I would steal from only the already dead, and end up with IV bags I would have to store in the snow in the back yard so they stay fresh and sterile. Then I could have myself on a just-perfect drip and write this pablum forever...

Until summer came and the snow melts. Then it would be time to have a serious talk with the parents.

[PAIN PAIN PAIN PAIN PAIN PAIN PAIN: 10/10

ANXIETY (repetition of the word is difficult and ineffective... Imagine if you were the noise from the radiator in Eraserhead...): 10/10 -- due, in large part, to how anxious I am about having to be anxious about my pain mismanagement... Fuck I hate the Jesusland.

REMINDER TO CALL DISABILITY LAWYERS TOMORROW: Very important. I have to get my back-pay and get the hell out of Lummox and to a city where there is concrete and public transportation and doctors who accepted long ago that fibro is motherfucking real! (I'm anxious.)]

Catch the fun, beginning below!

I've moved from fibromyalgiafun.blogspot.com to this site because I have coined the word "fibromyalgian," to be used in the place of "fibromyalgic." It just sounds better. And was invented by me. DB Macklin.

I support the general use of the term fibromyalgian (only when proper attribution is given and this blog's site is written out for whoever hears the term, of course) to refer to drug-seeking pseudo-addicted pain-wracked rest-deprived anxiously depressed wretches everywhere.

Kisses. Enjoy what you may have missed:

04 December 2007
I'M MADE OF GLASS THAT HAS BEEN SHATTERED AND GLUED TOGETHER COUNTLESS TIMES!

Tomorrow I see a pain specialist. I saw one for about two years when I lived in Washington, D.C. I recently moved home because I couldn't hack it at my job because I couldn't think clearly and quickly -- FibroFog! -- and was given the option of quitting or being fired. I chose to retire. I packed up my things and went to my apartment. I barely left for more than three months, while I spent my savings, investment and retirement account money (it didn't take much time because I'm 29, not because I went on an early-retirement spending spree. Though I may have if I had known a heroin dealer). Finally, I had to admit that it takes the Social Security Administration a little while longer than that to award disability benefits (which I filed for, through a law firm I saw on a commercial during daytime television during my first week of retirement).

[OK, great start! We'll leave it here until next time. When that is will depend on how I feel (superterrific most of the time!) , especially after seeing the pain specialist tomorrow who, I hear, is a piece of shit. Why is he that bit of nastiness? Because he refuses to prescribe opioid analgesics to any of his patients. It's a good thing I don't feel as described in the heading every day! Nor that I've tried every SSRI, Lyrica and what have you, and that narcotics are my only chance to feel at all OK!

Stay tuned for: DOCTOR DOOM! (copyright Please Don't Hunt Down A Person With The Lawsuits Big Company!)

Today's pain: 5 out of 10

--Every post will end with me giving my pain on a scale of 1 to 10. This is my scale, though. For you, wuss, my one would be your Gimme A Gun Hell Would Be Better. Wuss.


08 December 2007
DR. DOOM!

So the nameless doctor in a nameless place in a nameless state did the following for me: he gave me trigger-point injections in my lower back. The pain was so excruciating I almost bit through my clenched fist, and my screams(?)... sounds kind of effeminate... likely were heard by all the other patients. It was the worst pain I've ever experienced, and I've bruised a kidney, broken a wrist, and have had a really bad paper cut on my thumb. It was such that, when the doctor was done with my right side I said, "Don't do the other."

"But the treatment works best if we--"

"Don't do the other. I can't stand it."

I looked at the nurse, who was looking at the doctor -- I'll call him Dr. Hilarius -- and knew what was coming: five more stabs in the back.

Which is the best way to describe what Dr. Hilarius did for me overall. After giving the injections, he told me to get a prescription for 600mg of Lyrica per day, an increase from my then-current 400. And that's all he did.

I informed the nurse, who was the only one who would talk to me after the injections, that I take Percocet 10/325s (10mgs oxycodone, 325mgs acetaminophen) and, since the doctor had prescribed nothing (I was to get the Lyrica, even, from my general practitioner) I was going to go through withdrawal, and then the pain that returned was likely to be so unbearable that I was bound to think of suicide.

She talked to Hilarius outside my room and came back and had to report what Dr. H said:

"If you have any problems, just go to the ER."

...My parents had told me that he was the only pain specialist in town, and that I had to deal with him for better or worse. So I held my tongue... After I said

"Well, could you please tell him that it's extremely negligent on his part to let a patient go through withdrawal -- and especially one with a history of suicidal ideation?"

The nurse left and came back:

"The doctor says you can get the narcotics through your family doctor. Otherwise, I guess you just have to go to the hospital."

And I held my tongue.

Next week I see a psychologist at the same treatment center. I have come to the early conclusion that I am trapped in a pain management center that manages pain by increasing it or letting it be.

Whenever I enter the clinic doors, I'll be surrounded by doctors who do not believe in practicing medicine.

[Not bad for today... Left a lot out, though. I'll have to tell you about how I now have 150 Percocet tabs, at the cost of being dumped by my GP. In Bush's America, no one wants to prescribe narcotics. They could end up in Bush's niece's hands! (Was it his niece that had the jones for Xanax? ...Anyway...)

Pain: 5/10.

Anxiety: 8/10.

--Anxiety is a new one! Which reminds me to tell you about the shrink I visited November 27th! Wow. It was classic. I've never come so close to hitting someone.

So you have a lot to look forward to. If my Dad still had some Provigil, this would go a lot faster. Oh well -- the suspense builds!]


10 December 2007
GET ME AWAY FROM HERE I'M DYING!

I believe I'm going to die, sincerely, for one minute, then am convinced I am fine as cherry wine the next. I cycle from total belief in the former to total belief in the latter, and have been doing so for perhaps an hour now.

I have been feeling like unholy hell for the past few days and have been taking dextromethorphan on top of my other drugs as a little experiment. What's DXM? Cough syrup, friends. Take a bottle of Delsym, drink it down, and see what happens (wait -- that was not an instruction). I recommend the orange flavor over the purple (it can't properly be called grape).

Wait, no -- I don't recommend anything. To the point:

Here I am, a 29-year-old, typing away at his father's computer, which is on the main floor above the basement I live in, tripping balls on cough syrup and SSRIs, and hurting like hell from the waist down (and there's no heaven above). My pelvic bone is on fire (of course, that is to be taken not at all sexually) and my legs are made of cement that hasn't dried just yet... but almost.

I want to be ages and hours and miles away from all of this... No such...

A word creates itself and reverberates inside what I feel is an empty skull, trying to find permanent lodging. ...I feel like I could go to sleep, vomit, or watch a few hours of Twin Peaks off the TiVO.

...Getting a cigarette out of the pack out of my pocket just now made me think my arms were going to snap off at the shoulders. The pain was sharp, like bear traps released on my joints, but now it seems far away.

And I suppose that is what the DXM is for... Depersonalization. Sure, itching your temple with your thumb just now was a new hell Dante missed out on, but don't take it personally! It's not you. It's the disorder. And it's sorry that things just don't seem to be working out.

I know I will regret writing this, but I had to make myself type at my worst... I must think of posterity... The exact definition of which I'm going to have to look up right now... OK, fuck posterity.

So why? Why am I writing this, now, though I writhe in my chair from pain?

...I think it's because the office with my dad's computer is on the way to the upstairs bathroom, which I went to use maybe an hour ago. It's as simple and stupid as that.

[Pain: 10/10

Anxiety: 7/10

Cough syrup: Too much of it was consumed. But when you're in the fire you'll consider yourself lucky if you can find your way onto the frying pan.

Chance I'll rue this post: 9.5/10.

Love and kittens]


19 December 2007
DEAR MORPHINE ADDICT!

[This is a fake letter to me -- one I would receive if I moved from here to DC, had MS (I gave myself a more well-established disorder/disease to put too-fine-a-point on the idiocy I have to deal with), and was treated the way I am being treated by the folks at at Quack Pain Clinic (I didn't want to call it a pain management clinic for obvious reasons) here in Lummox, Jesusland. -Ed.]

Dear new patient,

We understand you just moved to Washington, DC. Congratulations, and thank you for making an appointment with Quack Pain Clinic!

We also understand that you were previously diagnosed with MS.

However, we at QPC simply do not trust your doctors from Lummox (or any doctors from small towns). It is standard medical practice for physicians not to recognize nor accept the hard work of others in their profession and, more so, specialty.

The doctors who diagnosed you with, and began your treatment for, MS may have been wrong. So, of course, the only rational course of action is to begin from square one.

Below is what you will need to do.

1: STOP TAKING EVERY MEDICATION YOU'RE CURRENTLY USING!

If you go through withdrawal because of this, see if you can get into an ER. Most importantly, though, your withdrawal will confirm you're nothing but a drug addict and, with 100 percent certainty, seeking only drugs from this practice, and not relief from your symptoms (which may or may not be MS-related).

The drugs you are on now were prescribed by other doctors from a small town that is in another state! We do things differently here, and so you need to stop taking everything you were told to. Especially the Morphine and Klonopin which, we understand, are the only things that alleviate your breakthrough pain and anxiety.

ESPECIALLY: Since you were diagnosed with MS, the progression of which is slowed or halted by Avonex, you will need to stop taking this immediately. The main symptom of MS -- the relapse of demyelinization in the brain and spinal cord -- which is prevented by the Avonex you currently take WILL NOT, FOR WHAT MAY TAKE FIVE YEARS, BE TREATED BY THIS PRACTICE. We need to be sure you are not an Avonex-seeker. Your condition may become markedly worse during this time.

Please understand our misgivings regarding your former doctors, and our suspicion that you are nothing but a junkie.

We simply cannot take chances with our insurance, nor with the attorney general.

2. See a psychologist and a psychiatrist. Whatever you have -- even if it is MS -- almost surely has its root cause in emotional trauma. Please do not search the Web for scholarly articles or studies that back this up, because you won't find them. Rest assured that we know what is best for you.

3. See a physical therapist. Because it is almost impossible for you to move, and because doing so causes you agony and exhausts you in a matter of minutes, it is incredibly important that you do some kind of workout for at least 30 minutes per day, as though you have no disease/disorder whatsoever.

4. We will follow up in one year if the above people can't help you because, perhaps, emotional trauma is not the only cause of what ails you, and the pain of physical therapy has yielded no gains.

5. At that point, we will have to weed out Spinal Cord compression, Stroke, Acute Disseminated EncephaloMyelitis (ADEM), Lyme disease, Sub-Acute Sclerosing Panencephalitis, Neurosyphilis, Progressive Multifocal Leukoencephalopathy, Systemic Lupus Erythematosus, Cerebral Arteritis, Complicated Migraine, Diabetes, Hypothyroidism, Myasthenia Gravis, Acute Transverse Myelitis, Herpes Simplex Encephalitis, Polyarteritis nodosa, Sjogren syndrome, Behcet's syndrome, Sarcoidosis, Paraneoplastic syndromes, neuromyelitis optica (Devic's syndrome), HIV-associated myelopathy, Adrenomyeloneuropathy, other Myelopathy, Spinocerebellar syndromes, Hereditary Spastic Paraparesis, Guillian Barre Syndrome, Polymyositis, Benign Paroxysmal Positional Vertigo, Parkinson's Disease, Cerebral Haemorrhage, Amyotrophic Lateral Sclerosis (ALS), Mononeuritis, Huntington's Disease, Post-Infectious Encephalitis, Arteriovenous Malformations, Arachnoid Cysts, Arnold-Chiari Malformations, Cervical Spondylosis, and many more.

We will confirm or rule these out one at a time.

6. Then, if your diagnosis of MS is definitive -- perhaps in two to three years (though almost certainly longer), which it took your doctors in Lummox to diagnose and treat improperly -- you will be prescribed aspirin for your pain. Work with your psychologist and psychiatrist on your resentment toward our practice, and on any other MS symptoms with your physical therapist. This will be the extent of your treatment.

7. Please keep in mind that 1/3 of our patients have gotten 50 percent better on this protocol. (This has nothing to do with the fact that about 1/3 of people respond positively to placebos -- anything -- and these people report roughly 50 percent improvement).

8. If you seek a second opinion, we will be sure this other doctor hears about you from us before your visit. This is our policy with all drug seekers.

Finally, welcome to Quack Pain Clinic. Thanks to our policy, above, you will find that we are your only option! Should you survive the withdrawal from the various medications you are now on, we look forward to seeing you!

Sincerely,

Theducksays Quack, MD, and everyone at QPC


19 December 2007
PSEUDO-ADDICTION!

Fast Fact and Concept #69: Pseudoaddiction
BY David E. Weissman, MD
[Reprinted here to suit myself. I thank Dr. Weissman for his work. -Ed.]

The term Pseudoaddiction was first used in 1989 to describe an iatrogenic syndrome resulting from poorly treated pain. The index case was a 17y/o man with leukemia, pneumonia, and chest wall pain. The patient displayed behaviors (moaning, grimacing, increasing requests for analgesics) wrongly interpreted by the physicians and nurses as indicators of addiction, rather than of inadequately treated pain. Put simply, Pseudoaddiction is something that we do to patients, through our fears and mis-understanding of pain, pain treatment, and addiction.

Diagnostic Features

Behaviors that suggest to the health care provider the possibility of psychological dependence (addiction):
* Moaning or other physical behaviors in which the patient is trying to demonstrate to the provider that they are in pain
* Clock-watching or repeated requests for medication prior to the prescribed interval
* Pain complaints that seem "excessive" to the given pain stimulus
* Inadequately prescribed and titrated opioid analgesics; typically the use of an opioid of inadequate potency and/or at an excessive dosing interval (e.g. oral morphine q6 hours prn)

Any time there is a suggestion, because of escalating pain behaviors, that a patient on opioids may be "addicted", Pseudoaddiction should be considered. Perform a complete pain assessment and review the recent analgesic history:
* Is this a pain syndrome that typically responds to opioids?
* Are the current opioid dose, route and schedule appropriate? If so, has a reasonable attempt at dose escalation been made?
* Is there any past medical history to suggest a substance abuse disorder? Complete a comprehensive addiction assessment if such a disorder is suspected.
* Pseudoaddiction improves with the provision of adequate analgesia, including opioids. In contrast, behaviors associated with a substance abuse disorder will not change.

Management
If you believe the current problem is Pseudoaddiction, there are two key management steps:

Establish trust—a primary issue in most cases is the loss of trust between the patient and the health care providers. The physician and nursing staff should meet to discuss how they will restore a trusting therapeutic relationship; outside assistance from a pain or palliative care service may be helpful. Plan to meet with the patient and openly discuss the events leading up to the current problem; engage the patient in the decision process about the current and future use of analgesics.

Prescribe opioids at pharmacologically appropriate doses and schedules; aggressively escalate dose until analgesia is achieved or toxicities develop (see FF # 18, 20, 36). Frequently re-evaluate progress in pain management and ask for consultation assistance.

References
Weissman DE and Haddox JD. Opioid pseudoaddiction. Pain 1989 36:363-366.

Sees KL and Clark HW. Opioid use in the treatment of chronic pain: assessment of addiction. J Pain Symptom Manage 1993; 8:257-264.

Fast Facts were edited by David Weissman MD, Palliative Care Center, Medical College of Wisconsin until January 2007. For comments/questions write to the current editor, Drew Rosielle MD: drosiell@mcw.edu. The complete set of Fast Facts is available at EPERC: http://www.eperc.mcw.edu/

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: Weissman DE. Fast Facts and Concepts #69: Is it pain or addiction? 2nd Edition. July 2006. End-of-Life / Palliative Education Resource Center: http://www.eperc.mcw.edu/.

Disclaimer: Fast Facts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.


24 December 2007
WITHDRAWAL!

I'm detoxing for the holidays. Stepping down off Percocet 10/325s by increments of one pill every five days. Right now I'm taking four per day instead of the normal five... Well, normal was six, which barely masked my pain enough for me to walk three blocks in a day... A day that would ensure that I would be on bed rest for the following two days.

So five wasn't enough, but was all I could get from the GP I had. He dropped me because he didn't want to deal with a fibromyalgian. And he didn't want to deal with a fibromyalgian who is seeing a pain clinic that is horribly averse to writing scripts themselves. If they had their way, a GP would write all their prescriptions.

Have I made the point that the pain (no "management") clinic I'm seeing is totally fucked up?
And I know it isn't fair -- I haven't described my dealings with my GP in enough detail yet. I assure you such will follow... Perhaps when I don't want to tear my teeth out...

Anyway, the posts may have more time between them. Or maybe not. Writing -- getting things out -- can be therapeutic. In fact, I'm surprised the good people at QPC didn't prescribe it.
OH -- and sorry this is going to be an aside, basically -- I also am in the process of getting off Mirapex and Effexor and dear sweet Klonopin because all QPC will prescribe me is Lyrica. Lyrica Lyrica Lyrica by the mouthful. So how does 900mg of Lyrica stand up to Percocet 10/325s times five? It's a knockout in the first 10 seconds of round one... The winner? You're aware.

No segue -- I'm thinking about taking five Percocets a day until they run out. Why stretch out the misery? I know I'm experiencing less of it because of the (all too brief) step-down I'm doing, but am becoming convinced it would be better to go cold turkey (or turkee, if you prefer) from five. I've always preferred ripping off the Band-aid instead of trying to be gentle and taking five minutes and experiencing each individual hair being ripped out as separate events.

Will keep you, dear reader, up to date on any such decision. Until next time, I write you from Purgatory.

(My own, since the Holy Catholic Church decided there isn't one any longer...)

[Pain: from 10/10.

Anxiety: 10/10.

Self-righteousness: set to 10/10 and stuck there.]


27 December 2007
FROM ONE SUFFERER TO ANOTHER -- BACK TO THAT OTHER!

Someone e-mailed me, having just found out that I have fibro through the Interwebs. She told me she has been in pain for years and her doctor, who has been giving her Lyrica for years, has thought she's had fibro for years. My response is below (notice the emphasis on drugs drugs drugs, even though I don't know whether Lyrica works like an atomic clock for her)... Also notice that I am, in fact, sleazy:

Begin:

There is one thing you must do immediately: Find a doctor who PRESCRIBES OPIOIDS! I can't stress that enough. I get pain relief only from them, but the asshole doctors I've found in Lummox [I change the names of people and places, nothing else -Ed.] won't write scripts for them (especially since I was taking one bomber of an amount of Percocet... Which still didn't work close to well enough! -- even my DC doctor was super-reluctant to get me on COAT -- Continuous Opioid Analgesic Therapy... but he WAS going to, right before I was yanked home by my parents (I was having a very very nasty flare).

[Wow! I can't use punctuation properly! -Ed.]

So I never have been able to experience anything close to 100 percent relief. Which makes me pissed off enough to write a blog. How nerdy and 1990s is that? I write a blog...Well, my first book wasn't picked up through the traditional channels (it sucks), so maybe I can sell my diary...

OK -- also, get yourself some Ritalin or Provigil. I'd be on the latter if my doctors had any desire to allow me to be somewhat awake and coherent during the day. Might as well get some kick-ass speed while you're at it....

And -- stop.

Wow. Rants like those just pop right out.

Anyway, of course I remember you! In fact (not to be off-putting or sleazy), the last time I recall seeing you was at Mutual Friend's graduation party. I was drinking a fifth of Bombay Sapphire and kinda hitting on you. Later it was tent time and I was between you and Erin Lastname (how is she doing? any idea?), trying to decide if I should make a move on you or not -- despite Erin being there.

The booze must have gotten to me... Then again, not enough for me to actually try something, get rejected, and possibly kicked out of the last available tent.

So that's that... Sorry it had to be weird.

OK, so yep, I have fibro, but I'm having pretty good days now. The flare is over, and things are pretty calm now.

EXCEPT I'm coming off some pills (including my beloved sweet divine Percocet so save me jeebus), and it's making me more aware of the world. Which sucks, because I'm stuck at my parents' house. Goddam it.

Sorry to be lengthy

--DBM

[Pain: I will discontinue this portion -- I'm coming off Percocet, etc. and onto the all-natural hell that will be me without it. Not the withdrawal, mind you, but the pain of being alive. With fibro. So figure it's 1,500/10 until this feature resumes, or is brought back by popular demand. Wuss.

Anxiety: 10/10. I'm freaked right the fuck out all the fucking time.

Being lazy enough to post an e-mail: Hey that's pretty lazy!

Sleazy?: Umm-um!]


01 January 2008
I KNOW IT'S GONNA HAPPEN SOME DAY!

I begin my New Year with a mammoth migraine, which three Percocet 10/325s didn't touch. (The "10/325" refers to the pills consisting of 10mg oxycodone, which is what god eats for breakfast, and 325mg APAP, aka Tylenol, aka just about the best way to ruin your liver.)
But enough of that, for now... There will definitely be more complaining later. At the moment, here are some resolutions (you'll notice all are contingent on Number One...):

1, sorta.: To get on Social Security Disability finally finally finally (my first decision is due before May. ...That is, the first go-round in which People of Authority say whether I'm fucked up enough to qualify for SSD. I think about 1/3 of people are successful here. What I'll call the second pass is an administrative hearing.

You stand in front of a judge, who has seen all the evidence and made up her/his mind (read it in chambers, which is why s/he was an hour late opening the courtroom door and getting things started, even though you saw a person with a face just like her/his drinking deeply from a flask in their car in the parking lot... But it was the public lot, so it couldn't have been her/him... Or could it? People who are drinking at 7:00 usually are keeping things going from the night before, and certainly not rational). I'll be wearing a suit and sporting a cane, grunting with every move and, when I have to stand before her/hizzoner -- if I have the grapes -- I'll tell the maybe-lush that "It's a bad day, and if your honor doesn't mind, I believe I should sit for this."

In other words, I'll be standing. But, to prove I'm not a complete wuss (and if my case even goes to The Hearing...), I'll lean on my cane until it breaks. Or at least bends...

AND SO YOU MUST STAY TUNED BLOGFRIENDS!

OK, finally 2. To pay my parents back for room and board with the back-pay from the above. SSD pays you for some of the time you had to have a suck-ass life waiting for your benefits to come through.

Still, comparatively, my waiting peroid is likely better than many people's. My parents have a big house, a Wii, and the basement I call home is about 1,000 square feet. Plus I can TiVo Twin Peaks episodes... Though my daily watching of it is making me believe everyone in my town is a killer, and that strange forces exist in our woods...).

3. To move to Portland, Oregon with the rest of the weirdos.

4. To get and grow medicinal marijuana. (Legally, after number three -- so Michigan cops put away your batons!) All the Web forums and more and more medical literature is showing that it's one of the best things for pain. I read one where it topped everything but Kadian. And that's extended-release morphine, kids.

5. To buy a scooter! I imagine a great number of people in this country will say or think that doing so is "gay." However, the act of purchasing something cannot have a sexual orientation. And if you think you're insulting something by calling it "gay," don't make it a transaction... A swap of money for goods. Where's the fun in it?

Anyway, I'd like to think that going 60 mph on a seat cushion would earn someone a modicum of respect.

...My insecurities aside, if I have a scooter, I'll already be in Portland where, I hear, the scooter scene thrives. So riding a scooter won't be "gay," it will be, um... "Not-gay"? Whatever. Screw homophobes and screw using "gay" as slander.

6. Enjoy my retirement by writing books about writing books and losing weight on the food stamp diet.

7. Buy a big-ass teevee and a Wii! ...Because I'll have a lot of spare money for expensive items on SSD. Why do you think people refer to it as being awarded benefits?

OK, that's seven, and seven is enough for this morning, as I wait for my Klonopin and Percocet to take affect. But, since I could only take about 1/4 my normal dose of each because I'm being forced off them (see other ranting posts) I'll probably still get 3/4 the pain, migraine, spasms, etc.

Consarn it.

[Overall disposition: bubbly as champagne!]


05 January 2008
VIVA HATE!

Today I write you from the second story of my parents' house, as was my original intent. Heretofore I had been sneaking in my posts -- guarding them from everyone's eyes by switching to different Web sites whenever I was interrupted in the office/computer room. Today I'm using AbiWord on my Mac -- the computer downstairs is a PC (yuck!) -- because I can't get NeoOffice to work out. Abi isn't showing my apostrophes, and I would be incredibly worried about this except:

IT'S FINALLY REAL, NASTY, WANNA DRINK A BOTTLE OF GRAIN ALCOHOL TO (maybe possibly) DULL THE PAIN WITHDRAWAL TIME!

I'm out of Percocet. Well, not completely out -- I'm saving some for when I have to or want to be around other people, which I can't do unless I take high doses of strong painkillers... No, the SSRIs SNRIs NSRIs antispasmodics psychotherapy et cetera et cetera et cetera in any combination simply aren't enough for this little black duck. I'm special that way.

Which brings us to why I'm writing upstairs, finally, in what used to be my older brother's bedroom but is now mine for some reason (the change happened when I moved south): It's Time To Talk Shit About the Parents! Plus, I'd rather they think I'm jerking off or... well, pretty much anything but writing. Why? Because I'm writing, but haven't sold anything... So I'm a non-writer who is writing.

...I don't like the term blogger, but I couldn't say why. Probably because most blogs give opinions or useful information or infotainment or when twins are going to be of legal age, and I'm pretty sure this blog (or whatever it is) does none of those.

Anyway, wanted to write that I am in the full-on hell of full-on withdrawal. It was a lot easier the first two times. I should look up a real blog to figure out why. So it's too bad there is no InterWeb connection in this room.

Oh well... At least people feel like they should knock on a bedroom door. Even if someone is typing like mad, they still may be rubbing one out. Guys can jerk off standing on their heads. We're special that way.

Do women use euphemisms for masterbating, too? Do they have about 100 different ways to describe it? What do you (women) call it? America wants to know...

Now to end transmission... I can't take any more of this because my skin is crawling and I have to keep up with it. Also, I may vomit. Or just dry heave for a while.

Sorry I haven't talked shit about the parents. I'll do a lot of that in the future. In fact, I'll do a lot of talking shit about everyone I know because I'm a jackass who hates everyone. Or maybe I just can't understand them...

Let me end with this warning: If you grew up in a small town, don't move to a city then leave and go back, for whatever reason. Even for your own funeral. My migraines are made worse by the light shimmering off the foot of snow that covers everything, and my overall person is made worse by the attitudes of my parents and hick-ass doctors. Why didn't they go to U of M (and I write that as an MSU alum) and come out knowing something about fibro? About anything?

And why are my parents treating me worse as I feel worse for your god's sake? I know I'm acting like an asshole... How am I supposed to act when I have to stay in unlighted rooms (read: the basement) because of my migraines? And how am I supposed to act when I feel like I'm in Arizona for 15 minutes and the Yukon the next? And why why why and how how how...
Goddam it, it took me ten minutes to get up two flights of fucking stairs! Should I be happy-go-lucky about that one?

OK, there's the talking shit part after all. I know, far too little.

Anyway, now to put this in my jump drive and put it where you're reading it.

[PS: If you can find me, and if you can afford it, maybe you can give me... OXYCONTIN! (Bullet holes spell "OxyContin" as the shots ring...)

PPS: Wrote this yesterday, but didn't get to upload it until today. I'm lazy. Or my every living moment is torture due to opiate withdrawal and fibro. If this that doesn't tug at your every heart string, remember that even the Devil deserves sympathy...]


06 January 2008
EVERY DAY IS LIKE SUNDAY!

http://www.morrisseymusic.com/

All ow ow ow ow ow goddam it, ow!s today in every category (including sleaziness, if you've been playing along at home). And all I can, or will, do -- and feel awful for... But hey, why should I feel bad for desiring a little Old Testament-style justice! --

I should just start that over... I realize my parethetical and other tangents make it hard to follow along. Joseph Heller was the master of these... I need to read more of his books.

OK, so I am an awful enough person (but hey, the Judeo-Christian god likely would sanction it, so 75 percent of you pretty much have to believe in its fairness... Fuck, another parenthetical... I'm trying to set up this awful thing I want in a way that makes it hard for people to challenge and easy for people to understand it... Unfortunately, I just brought up the Bible and pissed off about 75 percent of you... Oh well, today's churchgoing people tend to substitute church for the Bible... And to paste over, horribly, the fact that God's an asshole. Look it up. And I'm an asshole too, made in his image)--

OK, so I wish my doctor's and shrink's children get fibro that is as bad as mine. I think only then will they understand that sometimes you follow the goddam motherfucking protocol and give someone who doesn't respond to ANY other therapies fucking opioids! My head is going to explode and my body feels like the tin man's.

If only I didn't have a brain...

Last night I dreamed of getting electroshock therapy... My insane asshole doctors would prefer this to putting me on opioids, I'm sure... Give the man anything but one of the pillars of modern medicine!

Then again, chances are 80 percent, I think (I just don't feel up to looking it up. Seriously. ...But I feel up to typing this... The world is a many-splendored thing), that a person will get cancer. If anyone in my doc or shrink's family (or -- please please!) themselves has to get surgery for it, let them be offered strong drink and maybe ether.

Let's hope no one needs an organ removed!

Shit. The things pain turns you into. I don't wish the above... Except maybe for the first couple hours after I wake up. The images get me out of bed...

And how sick is that?


08 January 2008
THIS TITLE ISN'T MORRISSEY-RELATED!

...though he and The Smiths are the best thing to listen to when you're down. Nothing else (and I like The Cure, too) allows you to wallow deep deep down in your own misery.

Moving on! It seems (with crossed toes) that I may have been granted a reprieve. This happens to fibro patients -- the agony waxes and wanes. I think the more popular term is that we fibromyalgians (I prefer this term to "fibromyalgics." A fibromyalgian sounds like an alien, and to most people and most doctors we're the closest they'll get to seeing one) have flares, and I think this term is wrongly and stupidly applied to us. A flare would be an exacerbation of what is our normal, baseline pain. And we wish. The truth is that the so-called flare is the norm and the very limited relief of very limited duration --maybe a month out of a year -- is our reality.

The truth, like everything else, fucking hurts.

My reprieve happens to occur just as I'm coming off Percocet -- had my last one yesterday -- and the parents are making hay into gold on that score. Mom especially. I reminded her that it's an amazingly impossible thing for my cessation of taking pain relieving medications (I'm getting off Effexor and Mirapex too) to cause pain relief. And I've also reminded my parents that their pleas to allow me to "let the new meds work" and their reminders that the increase in Prozac and Lyrica, plus the addition of Cymbalta in about two weeks need a couple months to work are likely to have a downside:

In about six months (if I'm still in Lummox, so help me and my too-kind parents -- had to get that plug in because I have one trifle with them maybe once a month. Maybe. ...That, and they're keeping me alive) whatever the Effexor and Mirapex did for me is going to end, and they may have an entirely different animal on their hands. I've gone off my anti-anxiety meds before -- they work, ergo you're not weird, ergo you don't need meds -- and it has always been almost exactly six months before I found myself in an ER, thinking I was having a heart attack, knowing differently, but having a king-hell panic attack and in need of sedation, a referral to a doctor, and relief from the 49 percent of me that believed I really was having a heart attack.

The thing about having panic and generalized anxiety disorders? If I have an actual heart attack, I'll likely be older and more accustomed to the king-hell panic attacks I wake up with every morning. So if I wake up with a real heart attack, that should pretty well do me in. I'll just take a Klonopin and brush it off.

I hope I'm not the only one who finds that hilarious.

[Pain (the scales are back!): 7.5/10 -- It's not a big improvement, but it's still an improvement... However temporary.

Anxiety: 8/10 -- Good as gold!

Self-negating title: You read it, You can't un-read it!]


12 January 2008
MARCAINE! MARCAINE! MARCAINE!

No more talk of Percocet: The taste of a new generation is marcaine injections!

I saw my new GP two days ago (I'll be staying with this guy at least until I start up my usual drug-seeking), and he gave me Marcaine injections into one trigger point per shoulder. I don't know how he found what were, apparently, the exact places he needed to inject, since my shoulders are (were? I think I get to use past tense about this for once) knotted as a forest of oak trees. (Ugh. What a horrible metaphor. Grade-school shit. And I apologize.... I feel decent right now and don't want to write. If I'm not in withdrawal, pissing off doctors and shrinks or being a general douchebag, where's the drama? What's the pull?... Please see past posts while I work this out...)

But he did find these magical places and stabbed me with needles and injected the Marcaine solution. He then held the needle in my muscle until the headache I've had all my life lifted off my skull, from the injection site upward.

I then repeatedly threatened the doctor with various signs of affection, but didn't follow through because the med student who was with the doctor didn't seem like the voyeuristic type. And he didn't give the shots, so he wasn't about to get to join in.

But as I walked out of the clinic, I began to believe I was getting my headache back. However, it was just my inability to process the fact I was pain-free from the shoulders up. I didn't feel achy or in pain, but... it felt like the shadow of a headache... Like it was a physical entity, a fog encompassing my head, trying to get back in -- pushing inward from all sides.

As of this writing the relief has gone down my back... The day after the injections I could feel the rest of my body for the first time, without a headache. And it hurt like fucking hell. I took half a Percocet in the afternoon because I wanted to outrun my back, where most of the agony came from. I've seen dogs chase their tails, and the outcome is never very good or interesting. Today, though, is actually a good day.

Then again, I've taken today the five pills a friend gave me yesterday. This Person described them as "better than Klonopin." I thought if they were a lot better, she was giving me the cup of christ. But This Person seemed to give them up too easily for me to be receiving that artifact in dissolvable pill form...

However, the two I took in the morning knocked me out for a few hours, which is a tall feat for any drug, so I would have to say they might eclipse Klonopin. Naturally, further study is warranted... But, then, I wouldn't want to get hooked on anything I can't get my own Rx for...

Or this 5/10 day [the pain scale encroaches into the body text!] is brought to us by the increase in Lyrica and Prozac taking hold. It's been about a month since the increase, and if the extra mgs are going to do anything, the starting gun should be going off about now.

Or the majority of what seems to be a miracle of science is not that at all, and is due to me being in a waning period. I'd hate it to be that, but know it must be a big part of me not being in so much pain.

...Mustn't it?

[I'm going to cause massive civil unrest by ending this post here, lamely. It's been boring as hell anyway.

Anxiety: 5/10

Willingness to crank out crap: Apparent.]