The Fibromyalgian’s dealings with the disorder, and with the medical establishment that doesn’t know more about it than a patient with Internet access.
I want to thank, with the utmost sincerity, everyone who reads this blog, and hope that everyone directed here will find my new home as cozy as I find it (I’ve been busting my ass to make it clean and easy to read). I can only hope that the readers I have been lucky enough to pick up here will follow me to my new site:
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!
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 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!
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?
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.)]
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.
…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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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…
[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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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) — by simply pressing on and not re-reading them. It’s going to hurt, since grammar and pitch and tone can always be improved upon, and I have always, until now, edited posts to improve these for at least a day to two after they’re completed.
So accept the two posts for what they are: the ranting of a sleepless mind, and please let me know if i wrote anything that could be used as cause to have me committed to a mental hospital.
[Pain: I feel like I opened a bag of 50 razor blades and swallowed them with a madman’s aplomb, on top of the worst pain I’ve been in in my back back and limbs. Maxalt has reduced migraine/headache/oh what’s it matter what the fuck I call it since it’s there every goddam day from off the chart to an 8/10. Much rejoicing. Maxalt continues to show that it is losing its efficacy.
Anxiety: I have smoked too many cigarettes in the past couple days and so my lungs feel leaden and un-inflatable. This contributes to a feeling of suffocation, which feeds my anxiety to a 10/10.
Hatred of doctor (though likely to pass) and of Ultram: 10/10. The razorblades would be easier to digest with Vicodin.]
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The Fibromyalgian 