OK... So Methadone Knocked Me On My Ass For A Month

Did not see that one coming!

But now things seem to be better... And not in the way I said before. For example: Now I know that I cannot lay down for a second during the day or I will pass right the hell out. If my head hits a pillow, bam!, I'm asleep for at least thirty minutes. That's how things have been for about a month now.

Then I got an idea: To try sitting about my apartment instead of laying about it. It turns out that this simple act changed my sleeping habits. Now I don't go to sleep until my head hits my pillow at 1 a.m. Previously, I had thought I couldn't do anything to affect how much and when I slept, so I didn't bother modifying my actions. It's a good thing I did, because my life is much more pain- and fatigue-less.

So I believe I will stay on my current drug diet of 60 mg Methadone, 60 mg Oxycodone IR (immediate release), 6 mg Klonopin per day. This costs me $162 a month. My doctor wants to put me on Cymbalta, which would force me to get a Medicare Part D Plan -- or Medicare Prescription Drug Plan -- which would mean that I would end up paying much more out of pocket per year than I currently do.

Since I seem to be doing well -- and should continue to do better the more my system is exposed to Methadone and is able to become used to it -- I think I'm going to forego a Part D Plan for now.

Perhaps I'll post an explanation about Medicare Part D someday soon. Then again, maybe I won't, since it would be an unholy pain in the ass, just as dealing with it is.

...Anyway: Hopefully I'm back to blogging. And back to having a life!

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Methadone Treatment Begins Tomorrow

Yep. This is going to be a post, on a blog called The Fibromyalgian, about fibromyalgia. What can I say (write)? It's a crazy world.

As I think I mentioned in an earlier post, I'm switching meds, most likely tomorrow, from Oxycodone to Methadone. Why tomorrow? Because I have an appointment with my pain management doctor tomorrow. Let's call her Dr. Not-Too-Damn-Bad, or Dr. NTDB for short. Or Dr. N for even shorter.

Dr. N is not too damn bad because she hasn't been afraid to prescribe me the dosages of painkillers I have required. She also came around on my Klonopin, and I'm on my necessary six mg per day, instead of the four mg she was previously stuck on. This is to her credit because every doctor is wary about prescribing a patient two central-nervous-system (CNS) depressants, which can result in the patient ceasing to breathe. And the vast majority of doctors like to keep their patients breathing.

The only problem I have with Dr. N is that she prescribes me Provigil for my chronic fatigue disorder. Before I came to Portland and began being treated by Dr. N, I had been taking Ritalin, which worked extremely well and, which is very important to someone who relies solely on Social Security Disability for his income, dirt cheap.

But Dr. N wasn't comfortable with prescribing speed to a fibromyalgian. It seems to her that speed and opiates and Klonopin are at odds with one another.

And I suppose I agree. But agreement doesn't make Provigil affordable. And so my chronic fatigue is left untreated.

On the first of October I will have Medicare. But Medicare doesn't help one out with prescription drug costs, and getting private insurance to help with my drug costs may actually be antithetical, since the cost of my monthly drug copays and drug insurance are likely to cost more than just buying my meds outright.

...Unless I start filling my Provigil, which costs something like four hundred and fifty dollars a month. Yeah. No typo: four hundred and fifty dollars a month.

Which reminds me to beg: Please help me get the treatment I need by donating. Please please please PUH-leeze! The button is right there... Right there on the right... And any amount helps! Any amount at all!

OK. begging done. On to the Methadone.

It's a tricky bastard of a drug because its half-life is longer than its active life. That is to say (write), that Methadone provides pain relief for a shorter time than it stays in one's system, in which it depresses breathing. So one has to be very OCD about one's Methadone schedule: If you're having a bad day and in a lot of pain and take more some Methadone to help you out, then take more... and maybe later some more, one can find oneself with enough Methadone in one's system to make their breathing cease before one's pain does.

Anyway, it's likely to be a good thing for me to be on Methadone. I'm currently taking so much Oxycodone that Dr. N doesn't feel comfortable prescribing a higher daily dose. For a patient to be taking one hundred and thirty mg of immediate-release Oxycodone per day could attract unwanted attention from the feds. But I can't take Oxycodone together with OxyContin (long-lasting oxycodone) because -- got a guess? -- OxyContin costs too much. That, and OxyContin is scarce because the feds are so overly concerned with the drug being diverted and under-concerned with the needs of people who are in constant pain -- which includes people who have terminal cancer, multiple sclerosis, and a bevy of conditions besides fibromyalgia.

The government is more concerned with keeping people from having fun by taking pills than it is with the quality of life of tens of thousands of people. And we're talking about pills that keep people from killing themselves or wanting to.

So tomorrow Methadone begins. I'll follow up tomorrow with the plan for how my transition from oxy to 'done is going to play out.

("'Done" work for you as shorthand for Methadone? ...Yeah. Didn't think so. And I agree.)

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THE EXAM! ...NOW: WAITING!

My exam was far too short. But I think I may have some sort of chance at being found to be disabled (infinite-non-jinx).

The doc started asking questions after taking my blood pressure, and I found myself reading from the pages containing the lists I made yesterday, so I just stopped myself and handed her the pages.

She looked at all the meds I've taken previously (we were on that topic at the moment) and was taken aback. So was I, truthfully, when I saw all the meds I listed, college-notes-style "a" through "z," then indented and listed next to asterisks. "A" through "y" covered only the meds I still have the bottles for.

After that I cheated on a few list items. For example: I put Paxil on the list (note to dear reader: Do Not Ever Take Paxil) and simply noted that I've taken every other SSRI, SNRI and NSRI as well.

So she had, and I hope the Social Security Admin. will end up with, a pretty-complete list of my current meds and their dosages, my current treatments (TENS), my past meds prescribed/taken, my past treatments (trigger-point injections, all the other injections given by Dr 9, so on) and -- first things last: everything that tags along with fibro (chronic fatigue, etc).

(Wow... This is so deadly close to what I wrote yesterday. ...Best to get past the list.)

She was amazed by everything. She would interrupt something she or I was saying to mutter "...You're only twenty-nine..."

She seemed to have a problem with the OxyContin and the fact my doc had upped my dose two months after I started taking it. She was worried about habituation, the definition of which she gave me... Not as an insult. She did so before she found me using similar words in our conversation. I let her know that the correct Oxy dose has not been reached, and I didn't need to take more Oxy to get the same relief I originally obtained from it. I also let her know I've been on high doses of benzos (mostly Klonopin) for more than a decade without becoming habituated, without escalating, on.

I also let her know of the studies I've found that prove people who need painkillers and benzos don't get habbed, hop on the escalator, get addicted, all that mess.

But it turns out that, even if she believes I am having to escalate my Oxy dose, she realized what the following illustrates:

"Overall, you've got to realize that getting on OxyContin was the last option I had and I had to take it."

Immediate response: "Of course without doubt."

...It may be a good sign that she spent most of our appointment trying to think of a clinic or hospital or doctor I could see that could somehow treat me better than I am being treated now (impossible -- and she came up empty, which was the only possible thing to do. I've tried everything).

Also, I believe she was impressed by the life I had been living until I had fibro (work-wise) and appreciated what it meant for me to be kicked off the track I had built.

...Fuck.

God damn it.

Now I wait for a letter and try not to think about everything that letter could be.

I don't know how to feel.

Until I figure out how I should, I'm at my default setting: Extremely Anxious.

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FIBROMYALGIA, SOCIAL SECURITY DISABILITY, CINDER BLOCKS!

Tomorrow is my second, and hopefully last, exam to determine whether I am so decrepit I must, essentially, become a ward of the state.

When I found out I was to have the test, two cinder blocks immediately were stacked one on another atop my ribcage.

So for weeks my muscles have been weakening until now my lungs only can inflate enough to take in as much air as is held in two of the empty pill bottles (one for each lung) I've kept in a drawer I'm about to pour on the floor so I can make a list of most of the the meds I've previously taken.

For the MD examining me I also will need to list all current and past treatments (like trigger-point injections), ailments that accompany the pain of fibro (like chronic fatigue) -- anything I can think of... Though I won't be able to get everything down.

(I know I've written something quite similar to this post before. But hell, I'm padding my blog -- I admit it... Plus I haven't read my own stuff in a while and recall my previous pieces as corpses in need of a Dr Frankenstein. ...And I'm not referring just to the recent stuff.)

I'm afraid to tell the whole truth and nothing but to the doc tomorrow because it's going to sound like I'm horribly inflating my case.

But I'll be truthful anyway... But be sure to let the MD know it's going to seem like I'm padding -- the way I'm padding the blog right now.

[UPDATE! -- written after initial post]

My analogy using cinder blocks was stupid: It only works if I've been lying down ever since I found out about my appointment... And I've had to walk to the bathroom a few times since then.

So how about this: Since then a daily-tightening rubber band has surrounded me from armpits to floating ribs.

Or how about this: Screw the analogies. I've been increasingly anxious ever since the letter, and now I'm in such a panic I barely can breathe.

Tomorrow will decide how I live the rest of my life.

A bit stressful.

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ON THE 11TH: MY SECOND SSA DISABILITY EXAM!

An MD is taking care fo this one. So I'll have to write down my many disorders and all the drugs I take now/ever have taken, all the tests that I've had done, and all the treatments that have been foisted on me.

It should be a blast.

Meanwhile, the Ritalin doesn't seem to be working for me. I've gone back to sleeping all the time.

And since right now is a time, I should be sleeping in it.

I'll get back to it, and let you know what impressions I have after the exam.

...I need to learn how to write in my sleep...

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COMING SOON: ANOTHER EXAM SO THE SSA CAN ENSURE I'M DISABLED!

My lawyer called me yesterday to let me know that, now that a psych picked by the Social Security admin. has examined me (what? three weeks ago?), the SSA is going to have me see an MD of their choosing. Hopefully soon...

I'll have to be sure to list all the stuff I have -- you can't say "I have fibro" to a doctor and expect them to know that that means you have a disorder that is comprised of various other diseases/disorders, plus the pain everyone knows it causes, I've discovered. I also need to list all the medications I've taken and treatments I've been through, too.

...With all that, plus the doc's personal findings, I can't imagine he/she reporting to the SSA that I should be put to work in a coal mine immediately... Or saying I could be hired by any company for anything. Like my personal doc said -- "I hope your book works out [I'm writing a book... Seems important to note that, here], because once you fill this you'll never get hired by anyone for liability reasons" (then he wrote me my first Oxy script).

"Hi! -- Calvin Bandini, here for the interview..."

...

"So what you're saying, Mr Bandini, is that you're pretty much on something like heroin, plus uppers and tranquilizers twenty-four/seven?"

"I guess, yeah. But, I can't get high from the stuff. I take it out of medical necessity."

"...Yeah... Huh...

"Um -- Do you think your medications would affect your ability to do you job?"

"Only in that they would allow me to do my job. --Provided I can get a one- or two-hour-long nap in sometime during the day, don't have to remember anything said to me five minutes after it's been said, don't have to walk, stand nor sit for more than thirty minutes at a time, and can have anywhere from four to ten days off per month, depending on what treatments I need at any given time.

"...You know, pretty average stuff.

"--Oh! I can bring in my own hammock! It's one of those you can set up anywhere you have the space! So the nap-thing is really a non-issue!

"...And you guys have a three-day workweek, right? Because I need to rest four days out of the week or I just get completely messed up."

"...Huh.. Well... Yeah.

"...Thanks for coming in...

(This is the next thing the person would say if he/she were able to be honest:) "We'll call to tell you we can't hire you as soon as our lawyers come up with sufficient grounds on which to deny your application that also preclude you from suing us under the Americans with Disabilities Act."

--And, Scene!--

...Moving on in my staccato fashion: I should tell you why/how the hell I'm up at eight in the morning (so unnatural... It never felt right for me to be up at this hour even when I had to be for work): Every time my Oxy dose is upped my bags pack themselves and I'm sent on an unplanned vacation to Snoozeville for about a week until I become used to the increase. (Thankfully, the sleepiness wanes but the pain relief doesn't)... Which is why it's eight a.m. and I've been up since eleven p.m. ...Last evening I passed out right after taking my second, 20mg, dose of Ritalin. ...If that doesn't illustrate my exhaustion, it's impossible to.

My body has pretty much matched my mind, now, in weirdness...

...So I guess I'll be getting something from the SSA in the mail, hopefully soon, re when I get the pleasure of being probed by a doctor. ...And let's hope the doc has some experience -- or at least knowledge of -- fibro beyond having seen those whiny, demeaning commercials for Lyrica.

...It now has been a year since I applied for disability. Wow.

...And I remember reading that the SSA was making it a priority to expedite disability decisions this year. I'm actually glad that isn't the case (or doesn't seem to be, anyway). The Bush administration's idea of expediting disability claims, I'm sure, would have been to throw all of them out as baseless.

Remember when "compassionate conservatism" was all the rage? ...If the phrase "compassionate conservatism" was on the SAT, it's analogue would be "humane death penalty."

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WAITING FOR SSA TO MAKE A DECISION RE MY DISABILITY!

It now has been exactly two weeks since I was examined by a psych. chosen by the Social Security Administration. Someone I know, who succeeded in getting disability benefits, said he received his decision within a month. Perhaps I will get mine within two weeks.

Now would be a good time to have patience, which I've always sorely lacked...

But, on the bright side of the I-Can't-Eat-anything-With-Yeast-In-It-Anymore situation, I've been so preoccupied with watching my diet and its effects (minimal: It's easier for me to wake up now, but still very hard for me to stay awake, even with 40mg Ritalin and all the green tea (which has caffeine) I'm drinking... Green tea being my sub for coffee, the latter of which I'm also allergic to... It's a good thing I've always liked green tea) that I haven't had much time to think about the forthcoming decision from Social Security. Also, I've lost seven pounds in one week. Perhaps because my diet, now, is a hell of a lot like what people in the first two weeks of the Atkins program are supposed to eat.

...Waiting is boring. So is this post. How fitting...

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MY SOCIAL SECURITY DISABILITY EXAM!

Well, who the fuck knows how that went. ...I just know I don't.

The psych who administered the exam seemed sympathetic, but the cognitive memory disorder test was too easy. Every psych (two prev.) but this one asked me to remember three or five very specific things, and let me know I would have to recall them after five minutes of conversation (which I cannot do). Didn't happen this time.

I was asked who the current president is (and had to taste his name in my mouth as I said it... I need to rinse with Drano) and who the previous president was, then asked to count backward from one hundred, subtracting seven on the way. I've always failed the shit out of that one. The psych let me flounder for about five minutes before turning off the embarrassment.

And then I was asked to interpret three metaphors! I have a BA in English! I was a professional copy editor! NO FUCKING FAIR!

"What is the phrase 'The grass is always greener on the other side of the fence' meant to convey?"

Who the fuck doesn't know that?!

If we're testing to see whether I have opposable thumbs just have me hold up the fucking digits!

Maybe testing the mental acuity of someone who has spent his entire life studying all the goddam nuances of the English language is not best-done by asking him to interpret common goddam metaphors!

Gr.

...Me telling the story of getting fibro, showing him my current meds, and answering the five memory questions. That was the visit.

(It's important to note that I have nothing against the psych, but know it's the Social Security Administration that sets the questions.)

Too much of me thinks I'm fucked...

Also, the Ritalin seems only to work for about three to four hours. I'm fucking tired.

Gr.

FUCK!

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I'M STILL ON SICK LEAVE!

Tired from the moment I wake up until I finally sleep... Getting 11 hours of sleep a day... Head imploding and ex- at once... Everything aches though I barely can move...

With any luck I'll be done feeling this way by the time it's time to feel this way again, when summer shows its ugly face...

Sorry for not posting. I can't think.

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SOCIAL SECURITY DISABILITY, MY LAWYERS, MY GOD!

Yesterday I called my disability examiner, and ended up talking to someone who was taking her calls for her. I was informed that my oh-so-helpful lawyers had not sent my examiner quite a bit of the paperwork she needs to make a determination re my case.

Every goddam time I call my lawyers I have to remind them that I have not lived in Washington, DC since the end of last September, and that I now live in Lummox, Jesusland.

So I told my caseworker's assistant, or whoever the hell I talked to, that my examiner needs form 1696 -- whatever that is -- and that she had not received the form listing the six-or-seven doctors I have seen since coming to Lummox.

Whoever I talked to at my lawyer's office informed me that they had not received the form listing my doctors and their contact numbers. I said this was impossible, since it was sent weeks prior to my call. I was then informed that "maybe it just hasn't been entered into the system yet since our computers were down for a few days."

Words like beautiful music...

But the assistant or whoever was kind enough to simply get my examiner's number and let me know she would call her immediately.

So maybe something is getting done.

But maybe not.

...The shite thing being that I never know what my caseworker has or has not done until and unless I call her.

If I didn't have fibro fog and could keep a thought in my head for more than a few minutes (I have to re-read what I've just written to be able to stay on-topic simply when I write these posts for crissake) I would fire my lawyer(s) and do the rest myself.

But I can't. And that's kinda the point... Part of the reason I'm seeking disability: cognitive memory disorder keeps me from being able to do just about anything for myself. The agony of fibro keeps me from doing the rest.

...Not that I'm all-too-down regarding my situation. The above is just a statement of facts. And I'm coming to grips with fibro and the limitations it puts on me so, though the above para. seems depressing, the matter I deal with ceases to get me down.

Ignorance is bliss.

...But the fucking pain is another thing...

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