time dilation and having the plague

So, as you might have guessed, the previous post is pretty much a month late. It's not that I wasn't completely thrilled by David's phone call, but days start running one into another seamlessly.

Then I had the Plague and I died. Then I got better and time continued to not really have any meaning to me. Oh, I see this blinding orb move across the sky, then a smaller one moves along the same path, but that has no relation to time. The day and night doesn't mean the date has changed.

And even better, I've started to notice "cognitive impairments", or what most people call "brain fog". I'm hoping that it is side-effects from the Neurontin, which I'm almost maxed out on. If it's not a drug side-effect, *sigh* I don't know. I'm still not sure if I want to know if the cognitive impairment is permanent. Maybe it would be better to not know.

Hell, I may be more impaired than I think. I wonder what my current IQ score is. It was...well above average before all of this started, and the test I took off the interweb at the time which was within one or two points of a professionally administered test when I was in first grade. (time passes) Uh, yeah. My current score isn't as good. Don't start with the older one is, the more unreliable the tests are, and you have to take the exact version, blah, blah, blah. I did want to finish writing this tonight, so I took one of the first tests I found.

Even more fun, I may end up going to the Mayo Clinic. That's another post, because it's the only way to keep on track. But it won't be tonight because I'm saying f*** it and going to sleep with Top Gear in the background.

with great power, comes great arrogance

First, let me say that, on a personal level, I like my pain management doctor and his nurse practitioner (M, a Certified Registered Nurse Practitioner, because I'm lazy). They're great people, and M spent more time than she had to just listening to me when I was in the hospital in June, manic as all hell because of some of the meds I was on.

This is a professional gripe/bitch/moan.

I think the pain management field is broken. There are people out to legally get high and abuse the system. Then there are the rest of us, who live every day of our shortened lives in pain most of you have never experienced, and are denied adequate pain control because of those who abuse the system.

So the fix is to crack down so hard that those of us in delirium-inducing pain have to endure it so that the people who want a buzz can't have one?

"...I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone..."
- Hippocratic Oath, Classical version

Withholding treatment causes harm to patients. I think the pain management establishment has forgotten this.

I'm ready to sever my relationship with the pain center and see if my neurologist will take over my pain management. At least he will return my phone calls and won't make me wait weeks for an office visit

~~~

Usually, I try to make light of my medical crap. This is not one of those days.

First, some background information. My current round of neurological meds tend to make me dream very vividly about whatever TV show/movie/book I've just watched or read before going to sleep. I watched "The Prophecy" for the first time in several years right before bed and that night became Thomas Daggett. I've gone back and re-watched the film since then and what I dreamed wasn't in the film. I wasn't just experiencing a scene first-person, I was getting the director's cut in my head.

Yesterday I was in so much pain that I was actually delirious off and on. I found myself living "Stargate Atlantis" (probably because a new episode had been on Friday night, so it was the freshest thing in my memory). I was being tortured for information (by the Genii, if you're familiar with the series) on how to sink the city. I didn't know how to sink the city, I was a member of the science contingent, studying plankton of all things. My torturers thought I was trying to hide information, so they kept going.

I have bruises at the base of my left thumb from where I was biting it, trying not to scream.

(Gods only know what my delusion would have been if I'd been watching Top Gear on BBCAmerica. "The....the Bugatti Veyron has 10 radiators and generates 1,001 brake-horsepower but I don't know how much torque the engine generates at 7,000 RPMs...")

All because I can't get an increase in my pain medications without an office visit, or an actual hospitalization, because some people like to get high.

Now, I'd be lying if I said I didn't enjoy some of the side effects of using my meds properly. Yes, they make you feel good. Anyone who says differently is a liar. Admittedly, a bullet would feel better after gut-wrenching pain for four fucking hours.

Maybe I do need a nice Thorazine vacation. I don't need 10 years EMS experience to tell me that delusions are not a good sign.

the stigma of pain medications

From the "chaps my ass" file...er, maybe that's not quite the right description. How about "pisses me off"?

The stigma of being ill. It's there, and it's real. If you've ever been sick and not wanted to tell someone the truth, you've been there.

Why? Why should we be ashamed of being sick, of having an illness? Why should some symptoms of a disease be acceptable, and some not?

I'm not talking about polite conversation here, about descriptions of diarrhea. There's a time an place for thing which may squick people. And I know there's the grey area where polite society meets genuine social stigma, a taboo.

Pain Medications

I'll admit, I've felt ashamed of the fact I have to take opiates/opioids/narcotics/the heavy-duty shit or whatever you call them. There is a genuine stigma, a social taboo, associated with taking opiates on a regular basis. If I don't take them, I'm in severe pain, and that's the end of it. Well, the opiates also slow down the digestive tract, which in me is a good thing. There area actually prescription anti-diarrheal meds that are opiates.

But I digress.

Why should I feel ashamed of taking an opiate every day so I can maintain functionality? Why should anyone feel that way?

You're just getting high. Pain patients only want the narcotic high. She keeps getting stronger drugs, she's hooked. Candy-man. Taking narcotics every day makes you an addict. Addict...dope-head...not really in that much pain...cope with it, everybody had pain...

Did I miss any?

Why? Why should this be?

I expressed my nagging anxiety about being on opiates to the psychiatrist who did the psych consult for me, to prescribe the meds to even out the steroid/demerol psychosis. He asked me to define "addiction" and I ended up with more or less, using or taking something for the pleasure of it, because of a want, not a need.

A want is addiction. A need is a symptom and a controlled medical condition.

I had to get over this anxiety. Why should I be afraid of being an addict? How do I take my meds? Every 6 hours maximum of 4 a day, says the bottle. But sometimes, when the pain is bad, I take two and ration out the remainder to last until my refill.

Both the psychaitrist and my pain doctor said the same thing.

It's OK.

It's OK. Some days are worse than others, and that's the nature of pain. The 4 a day is a guideline, and a double dose is fine; what would be prescribed, and perfectly safe.

I signed a contract with the Pain Center that I would use my opiate prescription exactly as prescribed. I would not take extra or double doses, I would not run out early. If I break the terms of the contract, I will be completely SOL as they drop me as a patient.

My doctor said it was fine to break the contract in that way. It's expected, from every patient, just as long as I don't go trying to get early refills.

- What about nausea/vomiting with the Crohn's? I asked. If I take a double dose, throw it up [he could see the anxiety building in me], I'll come up short...

Hmmm...well, if that happens, we know about your Crohn's and you take both phenergan and zofran for nausea/vomiting? Just let us know, I'll make a note of it in your chart, you can have early refills in this case, until your Crohn's settles down.

- What about alternative routes? Trans-dermal patch, oral gel...

We can give you some fentanyl patches to use for bad days. They're not for breakthrough pain, that's what 2 percocets are for, since the fentanyl patches takes a couple of days to build in your system. Use them for a few days instead of the tablets during bad stretches. Talk to us if you look like you're going to run short. We'll take care of you.

- OK, but sometimes I think the phone messages I leave end up being a game of telephone and by the time it gets to you it seem like I'm not having as much of a problem as I actually am...

Yeah, that happens. Just call us back, make sure I get the message. I'll take care of you.

I'll take care of you.

Now, as a patient, I really should keep a pain diary. Log my pain levels each time I take my meds. I have three diseases which are painful individually, not to mention the snowball effect pain has. It has real physical effects that are negative. Higher blood pressure, higher pulse, higher stress overall.

I do not need any more stress. It has a history of making my diseases worse, especially the Crohn's.

...

So I've just revealed to the entire blogosphere what I take, why, and even how much and how often. I feel better, less stressed, because I know there's no shame in taking my medications the doctor has prescribed, needs me to take.

But. This should never have been an issue in the first place. I'm not telling you about taking my migraine preventative, after all. That med is not an issue in society.

Why should being treated for severe pain, by an anesthesiologist be any different?

It shouldn't. Unfortunately it is. For me, for other patients, for society. There's something very wrong with that.