Showing posts with label social security disability. Show all posts
Showing posts with label social security disability. Show all posts

20 September, 2009

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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24 July, 2008

GOOOOOOOOOOOOOOOOOOOOAL!



My lawyer called me today to let me know I have "won" (seems like a poor term to describe the situation... But that's how she put it) my Social Security Disability claim.

Which means I will be getting back-pay for the year of my life I've wasted (fifteen months if you're counting) waiting for this decision, and a monthly income of... Well, since I can't make any money myself, at least it's something.

More to come blogfriends, at long last! (But you have to wait longer because I'm too happy to write today!)

Finally I can breathe... The terror ebbs.

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11 June, 2008

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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10 June, 2008

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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05 June, 2008

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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28 May, 2008

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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21 May, 2008

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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