Showing posts with label painkillers. Show all posts
Showing posts with label painkillers. Show all posts

27 June, 2008

A BIT OF NEWS FROM THE PAIN RELIEF NETWORK!



[This came to my inbox and I thought I'd pass it along and urge everyone who is able -- after donating all you can to me me me, of course (button's on the right) -- to give give give to PRN. The e-mail:]


Pain Treatment Advocacy Group Sues State of WA
Jun 25, 2008
By: Donna Gordon Blankinship
The Associated Press

SEATTLE - A pain treatment advocacy group filed suit Wednesday in federal court to challenge the restrictions Washington state officials have put on prescription pain medication

The nonprofit Pain Relief Network says the guidelines for prescribing narcotics, written by the Washington state Department of Health and published in March 2007, have influenced pain treatment across the country and have made doctors afraid to give opiate prescriptions[...]

Me (Calvin) again:

Get the full story using this link.

Donate to PRN using this link.

This post's title is a link to PRN.

...And sorry for the dearth of posts this month.

Family.

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15 April, 2008

FIBROMYALGIA TREATMENTS: WHAT WORKS!



I'm posting this so, hopefully, readers who have fibromyalgia can get to this post quickly to find out what works and what doesn't. Here's what works:

1) NARCOTICS.

OxyContin, tailored to the dose you, personally, need, for instance. But different people in chronic pain need different narcotics. Which is to write, as I have before, that some fibromyalgians will benefit most from hydrocodone, some from morphine, and so on.

The take-away from this being that the only thing that will reduce your pain by an appreciable level is a narcotic analgesic. Fuck anyone and anything that touts a "natural" cure.

Well, I got ahead of myself: Fuck anything that says it's a "cure." By definition, fibro is incurable. If you thought you had fibro but it went away through one or another action(s), you didn't have fibro and please shut the fuck up because the people who actually have it are being hoist with your petard by the thousands.

My own mother told me about someone she knows who has fibro, but who does not experience daily, constant pain. I had to refer her to the exact diagnostic criteria to show her she had a hypochondriac (or wicked asshole) on her hands (and wasn't told the name of the person because I wanted to track her down and give her a taste of the pain she, despite "having fibro," wasn't in. ...Such is the insanity induced by my pain.)

Fibro is coming to encompass too many things that it is not because of inept doctors and moronic patients.

Anyone who knows anything about fibro is a pain specialist, pure, simple. And knows: Fibro is pain. Treat it with painkillers.

There are diets you can read about that claim they can cure you. If the diet cures you, you have Celiac's Disease, not fibro. Both cause quite similar symptoms.

Please, everyone who does not have fibro, shut the fuck up so fibromyalgians can be treated properly, so the disorder can get some goddam respect -- stop keeping us in the limbo of having been diagnosed with a pseudo-disorder, while you can simply cut gluten out of your diet and live pain-free, but unable to eat pizza.

...Trust me: Fibromyalgians feel your pain, douchebag.

2) NOTHING ELSE.

Only narcotic analgesics help people with fibro.

Sure, Lyrica may bring your pain down one number on the pain scale, but the extra fifty pounds you gain that it puts on your joints and vertebra are going to put your pain right back where it was.

Cymbalta: Doctors will be happy to give you this, along with thirty-or-so pills/injections that will do nothing or next to it, instead of prescribing you narcotics. (Pain relief from an NSRI. ...If I could laugh at that I wouldn't be able to catch my breath and drop dead, blue as a Smurf...)

However it is, by its weak ability to increase the amount of dopamine in one's brain (not by increasing norepinephrine, as most docs will say) also capable of bringing your pain down maybe one point on the scale.

But you'll still feel suicidally painful if you actually have fibro.

In short: Narcotics are the answer. Narcotics are the only treatment that works for fibromyalgia.

This must be accepted by doctors, and narcotic analgesic treatment must be insisted upon by patients (please see previous posts for all the crap I had to go through to finally get chronic opioid analgesic therapy).

If your pain isn't enough to make you cry your lungs out every day for a dose of morphine or oxycodone, chances are you don't have fibro and you're harming everyone who actually has the disorder. Find out what you really have, and don't let your doctor diagnose you as a fibromyalgian despite the fact you don't have a single trigger/tender point.

If your pain hasn't made you wish you were dead since it started, please get the correct diagnosis and shut the fuck up about fibromyalgia.

Please, as this disease becomes understood, let doctors and patients realize, together, the only effective treatment for it: narcs.

To anyone who can be helped with anything else enough to matter: You don't have fibro. You're not helping yourself by being misdiagnosed with fibromyalgia, and you're hurting everyone who has fibromyalgia by going with whatever bullshit treatment you're being given (I could go into cortisol here) and finding that it helps your so-called fibromyalgia...

I understand that fibro is irresistable to hypochondriacs... Fibro is quite an easy disorder to pretend you have if you do your homework.

The problems is that you fuckers are helped with placebos, with Lyrica, with Cymbalta -- you're in studies yourselves and keeping out true fibromyalgians and making sure that our treatment stays bullshit.

To all fibro-pretenders: Just let me press down with my thumb on a certain place in your lower back for about thirty seconds, and we'll know what you have and do not have.

[Jesus, did the ire rise today. And I've been happy all day, too. ...I never know what's in my head until I sneeze it out.

Pain: 4/5. Debilitating, the best it will get... though I may want to think about upping to 50mg Oxy next month... Still too soon to say for sure -- I need to see exactly what 40mg can do, and it's been only a week now.

Anxiety: 4/10. Debilitating, the best it will get.

I would not dare complain that my conditions are managed as well as they are... I believe I feel the best I possibly can.

Still, I do miss being able to lift more than ten pounds...]

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10 April, 2008

MIGRAINE!



I just woke up from a nap. Goddam my goddam head hurts so so so much ("faithful" readers can take pleasure in the fact this blasphemer is stewing in his own sin)...

...I fell asleep just before I was supposed to take my second dose of OxyContin, and am now waiting for it to kick in, having taken it within 30 seconds of waking -- four hours off schedule.

...The same migraine as every day, but unmitigated by drugs... Railroad spike through my right eye, another through the right temple... The skin and (seemingly) bone on the right half of my face and head firing nerves that yell loud as Godzilla pain pain pain... I can't stand the sound of my fingers hitting the keys but have to type, to do something to take my mind off the agony... Even if it won't won't won't work how could it ever... Pain jumps from the tips of my fingers, reverberates, amplifying itself every time it seems to bounce from one inner surface of my skull to another... Every square millimeter of the air attacking me like a million manta stings to the eyes through the simple act of seeing...

But in an hour all this will be a shadow.

How did I survive with these fucking migraines for so long without strong painkillers?

...Oh yeah, I was going to kill myself if Dr ML&S didn't intervene.

...It's a pity party! And only those who brought gifts can redeem their invitations...

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07 April, 2008

FIBROMYALGIA + WEATHER CHANGES = HELL!



I've been in my bed, balled-up into the fetal position for the past few days because the seasons appear to be changing. When there's a major shift in the weather, fibromyalgians feel like shit for some reason.

I couldn't eat all weekend, slept about 12 hours a day (which still wasn't enough), but spent quality time with my TiVo, which had been neglected since I have been reading lately... Around the time I started taking OxyContin...

(It would seem Oxy has increased my ability to concentrate rather than diminished it, the latter being what almost all doctors tell you it will do. "Do you want to be a zombie the rest of your life?"... I now am able to concentrate on novels because I can take quite a bit of my focus off how much I hurt.)

But I feel better today. Due, I have no doubt, to the fact I saw Dr ML&S today and he bumped up my daily dose of OxyContin from 30mg to 40mg.

Because my IBS was horrendous over the weekend, I'll be getting a blood test, probably next Monday, to make sure I don't have Celiac Disease. (If I do, all my problems could stem from an allergy to gluten.) Which, of course, I've been tested for a few times already, and don't have.

But I simply do not say no to Dr ML&S. The way I look at it, to do so would be akin to telling the man who just pulled my drowned body out of a pool and resuscitated me that no, he can't borrow a screwdriver.

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14 March, 2008

HERE'S HOPING MY TENS UNIT WILL EASE MY FIBROMYALGIA!



Today I had my second-to-last physical therapy appointment. My therapist, who I refer to as Mary Cassatt, worked with my insurance and got me a TENS (Transcutaneous Electrical Nerve Stimulation) unit for free. Love her -- which explains why she gets a great name and people like Dr. Douchebag get names like Dr. Douchebag (those who follow this blog will know that he's the shrink who cut my Klonopin dose from 6mg to 4mg per day before he knew anything about my case. I've been super-anxious ever since he did that, and he doesn't care one bit. What a fucking douchebag...).

So I'm about to watch TV and electrocute the hell out of myself for the rest of the night. Should be fun!

...I'm also definitely getting used to the 30mg of OxyContin per day that I'm on. Yesterday (or today, to nitpick) I went to sleep at about 2:00 and woke at 10:00. Not bad. And I didn't feel like I had to dive under my bed's covers at 8:00 pm like I have every preceding day this week. Good stuff!

And today I don't feel tired or apathetic at all, plus I'm not getting motion sickness. Pretty sweet!

So I currently use only Oxy, Klonopin, Prozac, and a TENS unit to control my pain (from fibro) and generalized anxiety disorder (which is really, left unchecked, a 24/7 panic attack). And I think I may as well drop the Prozac. But I'll probably have to wait to get out of my parents' house to do that, since they figure I may as well take it since it may be doing something and it's cheap because I get the generic: fluoxetine.

But, the Prozac, I am all but sure, is doing nothing. Studies show that antidepressants are only slightly better than placebos. ...And I've been on every SSRI, SNRI, Gabitril, et al, and none of them helped. I have always needed Klonopin, and have been on large doses of benzodiazepines since age eighteen. It's the only thing that works for my anxiety at all and, therefore, the only thing I truly believe I should be taking for it.

So after all the crap with all my doctors -- I've seen about fifteen in all for my fibro -- I'm simply going to be on Klonopin, OxyContin, and use a TENS unit.

Very, very simple. The doctors I see and have seen, of course, had to make it as fucking hard as possible for me to get to this point -- trying probably around thirty drugs in all that didn't work, under-treating my pain and anxiety while doing so (except for Dr. L in DC. Guy is a genius, and provided me with the most stable period of my life by taking such good care of my GAD in my pre-fibro days).

To wrap things up: I have known for years that all I truly need are OxyContin and Klonopin. But it has taken years to get down to just these two (after I wean myself off Prozac/fluoxetine).

Most doctors do not listen. And most have their favorite therapies. And most hate to prescribe their patients Oxy and Klonopin because they're potentially addictive and can induce tolerance.

BUT NOT IN PEOPLE WITH FIBROMYALGIA AND AN ANXIETY DISORDER.

Doctors need to wake the hell up to the above reality.

Now for some electrocution!

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13 March, 2008

MUSIC TO SOOTHE SAVAGE FIBROMYALGIA: INTERPOL!



Still getting used to OxyContin... Though maybe a bit less tired, overall, today. Then again, I usually don't feel like I have to totally crash until 8:00, on the nose. If I do go to sleep then, I wake at midnight and can't get back to sleep until 4:00 or 5:00, then sleep until about noon.

...While I remain useless, please enjoy No I In Threesome:

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12 March, 2008

STILL GETTING ACCUSTOMED TO OXYCONTIN...!



I am so very tired...

Especially after going crazy in physical therapy. I am in pain, having a bit of a panic attack, and need some Klonopin and a nap.

Which is what's I'm going to take and what I'm going to do.

I should be accustomed to this side-effect (feeling logy) in a week or so.

In the meantime, this blog could be a bit boring, I'm afraid. But the excitement should return around Sunday.

In the meantime, I'll post what I can and try to make it interesting...

Hopefully I have interesting dreams while I sleep the clock around...

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11 March, 2008

OXYCONTIN, SOCIAL SECURITY, AND HELL!



I couldn’t post yesterday because my server was down. So here’s what happened yesterday:

I had to fill out new forms for my lawyers who only now are getting around to processing my change of address. ...I guess this is what happens when you hire a big firm and they switch your caseworker one billion times on you: Important things are shunted into the memory Hole. (Note to self: I’ve used “Memory Hole” too much lately.)

So I had to fill in a form to let my current caseworker know that she needs to check out my six new doctors -- my psychologist, my neuropsychologist, my GP, my pain management specialist, my psychiatrist and my physical therapist.

So the ball is rolling in Jesusland... But that ball feels a lot like the boulder Sisyphus rolls...

Also, I’ve been taking 30mg OxyContin daily, and have yet to adjust to its side-effects. namely, I get motion sickness from being in a car for two minutes and constantly feel tired.

This, too, shall pass.

Also (I’m wicked-awesome at transitions...), I’m finishing Dante’s Inferno today. It has failed to bring me back into the Catholic fold because the people he finds in hell who are punished harshly are the people he, personally, hates the most.

So this atheist, apparently, is only going to hell if Dante is my judge, and finds my character unbecoming...

It would seem I will end up with the Virtuous Pagans. In which case, the Citadel provides all the light I will need.

...Then again, I’ve had freaky sex (“freaky” in Dante’s view, includes oral and probably any position but missionary), so I suppose I could be cast about with the Sodomites. But, then, Dante put three of his favorite writers in with the Sodomites, and writes that their fate seems not-too harsh. ...And is the only person to ever suggest that these persons were Sodomites.

It seems to me that, before he took a break in writing the Inferno, Dante would have cast them in with the Virtuous Pagans, if not placed them in Purgatory, had he not wanted to talk to them so badly.

So my afterlife, according to Dante, should not be so bad... At least I’m not one of his hated popes. Then again, he judges everyone but the Florentines to be incredibly sinful people... But it should serve me well that I am not from any of the Italian places he names that are full of nothing but Grafters, etc.

Which brings me to this larger point: All religious people would place in Hell those they, personally, detest.

Leave it to divine judgment and shut the fuck up, people!

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09 March, 2008

FIBROMYALGIA + BAD SKATING = OW!



I went skating today. The first pic is my left knee, the second is my right:



Note how the left is already so swollen my patella is almost hard to make out.

I went for a disaster torque (grind): I went down a mini-ramp, jumped off a three-foot-high launch, and I actually had the trick -- on a ledge five-and-a-half-ish feet in the air, balanced between the third and fourth wheel of my frame and on my tweaked left boot. Then... Well, something happened.

I don't think it sunk in that I actually had the grind. It was stupid of me to try it in the first place because it was my second time out in two years... But a bunch of grommets were blocking the fun box and I had grown sick of running into and then yelling at them.

So when I came to the end of the ledge I didn't know how to land -- forward, backward? What if I just let things sort themselves out and drop straight down onto my knee and bash the smaller ledge below?

...The latter is what I went with.

...So the above makes it a good time to talk about how the OxyContin is working (I started taking it today because I was a little excited). I've taken two pills today, 10mg each (and have found out that taking 10mg of OxyContin means taking only about 8mg to 9mg of oxycodone over a period of time), and things seem to be well. I take another at bedtime. I may not have to take as much oxycodone in the time-release preparation because it provides round-the-clock relief. I won't be building up a massive migraine in my sleep every night...

However, the lower dose of oxycodone means that my IBS is... er, causing problems... (I promise never to discuss IBS in any detail.) But my pain is still about a 6/10... Unless you count my damaged knee and how it feels...

...Well, then I guess my pain would be a 6/10 nevertheless. Fibro puts one in such a state of pain that, as I've told many doctors, I'm sure I could take a bullet in the gut and hardly give a shit. ...The positive spin is that I would actually be able to drive myself to the ER with one hand and hold in my intestines with the other.

So I suppose my point, then, is rather well illustrated: Whatever I did to my knee to make it balloon like it has did not increased my pain one iota. It's simply impossible to bend the fucker.

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08 March, 2008

OXYCONTIN!: THE CLOSEST THING TO A CURE FOR FIBROMYALGIA?(!)



My apologies for not posting in a while. I spent the past few days at my younger brother's and couldn't post because it would have been rude.

So now I'm very tired and about to nap, sitting here, upright.

But I felt the need to write that I have been prescribed OxyContin, and look forward to starting taking it because I believe it is likely to be the best way to manage my pain. I'm going to start taking Oxy Monday because I'm going to go to the local skate park tomorrow. My pain is that much more tolerable, and my life that much better, that I can resume the activity that, after writing and sex, gives my life purpose!

...It's important to note, here, that doctors will tell you that narcotics will turn you into a zombie who never will leave his/her couch.

More bullshit(which is all you should expect to hear when a doctor talks about narcotic/opiate analgesics). When you take someone's pain level down to a tolerable level, they can stop being a zombie, get off the couch and do what they will. Before treatment the person was in too much pain to be able to move much. You take away the pain, you take away the impetus behind the person's near-immobility.

...I'm going to be taking 10mg pills every eight hours, so the dosing is more convenient... Better than taking five Percocets every three hours and fifteen minutes, anyway.

I just hope me taking 10mg of OxyContin doesn't mean I'll only be getting 30mg of oxycodone per day. That would seem to be a step back in my treatment, since I currently take 50mg of oxycodone per day.

Of course, you'll be able to read all about how well things go this week. But I'm cautiously optimistic!

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29 February, 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!



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28 February, 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.]

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22 February, 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 fillet knives fanatics...)

...On with it. Here is what happened in said dream:

I wrote the following on Wednesday night, hoping the doctors I saw today could read it, since my writing is better than my speech, especially since I've had fibro. Enjoy, and I'll tell you what happened at the Center after (this is going to be a long post, so swallow the drugs I don't have access to, if you have access to them yourself). The following is an integral piece of the story though.

Or not...

Hell, it's just so damn degrading it simply must be relevant.

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 pussy who "took the easy way out."

Dears, suicide is never the easy way out. It's how a sane person responds to an insane world that has pushed him/her to the ledge...

When doctors don't do the right thing, I sleep with a clean conscience despite the fact I've uttered every obscenity I can think of at them. I sleep better for it, in fact. I have known people for only one hour and have judged them to be stupid, vile, ignorant, and without the requisite amount of empathy to survive in an orangutan colony.

But do I really trust these snap judgments?

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

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

I was talking with one doctor today:

“Well you're so young no one would...”

(The point of using reason with these people had long past... In fact, I don't think reason has a place in the entirety of Jesusland... Get thee to a coastal city... And in the West or Northeast -- the South is tainted!) “Oh, of course, I'm 29 and I have so long to live that my tolerance would get so massive that...

"WAIT! I want you to read this!"

In my hand was the article from this post, showing that, as written above, people in chronic pain don't develop tolerance to narcs.

“No. I won't read it.”

“What?! It's only a few paragraphs! It covers a few studies!

A weird, small silence as we glared at each other, her eyes not cold, not distant... Simply no light behind them.

"What? Will reading it harm you in some way?!”

“No, let's--”

“OK, then riddle me this--”

“I won't riddle you anything.”

Can you believe this exchange? It's like a brother and sister squabbling, not a doctor and patient having a discourse for crissake!

“Listen, I know you're going to go into the bullshit--”

“I don't think this is the way we should be speaking.”

“OK, then it's crap that people in chronic pain develop tolerance to narcotics. If you would read this you would see that careful research bears out what I say.

“This is not the truth.”

“This is not the truth?! I hold the truth in my hand.” And I held my hand in her face.

“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...

...I tried to calm down by reminding myself that all of what I was experiencing is simply what happens when 40-year-old medical knowledge is applied to a disorder that is just starting to be misunderstood: My life gets completely and utterly ruined.

AND I AM SUPPOSED TO ACCEPT THIS.

GET WITH THE FUCKING PROGRAM.

...Of course, one may worry about the repercussions of one's actions -- fuck, “one” just spent four hours yelling at two different doctors, calling them nothing less than idiots (and being goddam spot-on).

So on the way home I called the Center and told the records department that I withdrew my HIPAA records-release as of that moment, and that the only person their records of my visit could legally go to are me. And, if they so much as think about sending them to anyone but me, they have to call me first.

Not even my GP is going to know what took place today. I'm just going to tell him they were only offering treatments I had already undergone -- which is exactly true. The bastards expected me to go to a hospital for two weeks and get the exact same treatments Dr 9 had given me with little success before he took off for vacation! Fucking freaks!

Goddam it I want Logic 101 to be fucking mandatory for everyone on this earth!

And, of course, there's Einstein: "Insanity is doing the same thing over and over again and expecting a different result." By his definition, I was in a house of motherfucking loons that plays at being a medical center. I used to think medicine was grounded in science, but now know better: It's mostly grounded in idiots and outdated knowledge.

I toyed with one of the doctors. I asked her to name a treatment and I would tell her if I had undergone it.

She stopped after four matches. And they were IV treatments. My god she thought she had me...

And I brought a bag full of medications I had previously taken which all doctors averted their eyes from as though the sun's incandescence itself lay inside. Every time I offered: "Don't you want to take down all the meds I've been on previously?"

"Just put that away, please," -- annoyed.

They knew I had them dead to rights, trapped in a goddam corner. I had already tried every single thing they wanted me to try -- a-fucking-gain. And they thought it perfectly sensible.

It was the strangest thing... They didn't act human when it came to this matter. They acted like very simple robots who had been given the wrong input and the only thing going through their brain-like-structures was DOES NOT COMPUTE! DOESNOTCOMPUTE! I saw them try to think of why they though why they did... In the end one doctor simply had to leave the room, with me saying,

"Hey, thanks so much for helping out a 29-year-old who has to use a goddam cane!"

"You know, it's your choice to use it."

"IT'S MY CHOICE?! I hope you die soon!"

The door snapped shut. I had jumped to my feet in a microsecond, and I believe she thought I was coming after her, armed with the cane I chose to carry just in case I wanted to beat the shit out of a woman.

Why else would I carry it?

Then the other doctor came to sit by me and said "Maybe this isn't the place for you; all you want is drugs."

I grabbed my head like I was trying to tear my hair out: "Are you kidding me? You two are talking about pumping every drug under the sun into my veins for a period of two freaking weeks, and I only want one simple bottle of pills -- only one drug -- and you think I'm the one who wants me to be whacked out on drugs?

"I realize this is going to end our session, so I have to say it: Anyone who doesn't think all of you are totally insane is insane themselves. Everything you and the other woman have said has been either a personal insult or an insult to logic. I'd ask you for a referral to the Anesthesia Pain Treatment Clinic or whatever it's called, but I know you won't give me one because they might give me those fucking evil narcotics and actually decrease my pain those assholes.

"Merry fucking Christmas."

Then I left.

...Anyway, when/if Dr 9 asks me about my appointment there I'll ask him why the fuck he sent me there.

Then I'll politely ask:

“And how was your vacation?

After he tells me how great Wherever The Fuck was, it will be my turn:

"Me? I've been great, of course! Thanks so much for leaving me high and dry, with absolutely no way to get any relief from my pain whatsoever! The weather in Hell has been fucking fantastic!”

...But I'd actually love for the Center to breach HIPAA and for Dr 9 to know all about what went down at the Center for Lobotomized Doctors. Then, besides having told MDs that they're not smart enough to velcro their kids' shoes I could get them fired and make off with some money, too.

It would almost be justice...

But who cares about justice anyway? Be honest with yourself one goddam second and realize it's vengeance that really gets your saliva going.

...And now I must apologize for this spotty account of this wretched, putrified day. I wanted to get down what I could as quickly as possible... But holy god I could tell this one a million ways a million times.

Until next, I say Viva Hate Forever because it's days like these when Hate is all I have. And I'm lucky that I can hate deeply and thoroughly enough to sustain myself.

But to you, blogfriends and fibromyalgians, love and kittens (especially if you somehow read this far!).

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19 February, 2008

PAIN, ANXIETY OFF THE CHARTS!



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

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

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

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

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

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

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

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

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

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

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

Viva hate...

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17 February, 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!]

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14 February, 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.]

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13 February, 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...

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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."

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11 February, 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.

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07 February, 2008

SEE THE MAGICAL HORSE PUSH THE MAGICAL CART!



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

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

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

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

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

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

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

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

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

I love it when a good analogy comes together.

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

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

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

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

My eyes naturally darted to his script-pad.

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

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

***

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

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

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

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

...Well, no. Not at all.

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

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

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

...Was I writing about skating?

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

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

...Maybe I was thinking too far ahead.

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

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

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

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

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

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

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

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

What in the flying fuck should doctors learn from this?

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

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