Tuesday, April 15, 2008


"Open Mouth Buddha, shedding Black Tears" Click for LARGE.
2007, Gallery #19, # 6915 - Kazuya Akimoto Art Museum.

Kyle and I were cleaning my room tonight. Hurt my back.

Nothing serious, but damn it hurts when it hurts.

In my head, I'm 30. *sighs* My body just doesn't play along. Grrrr.

Good news is, my bed is now clean. It had 20+ books, and a stack of magazines piled high. Now my bed's made neatly. I could stretch out before; now I can stretch way out.

I owe three people/magazine/journals, articles or notes on stuff they're writing. Plus I'm way behind in posting here at GNB. I've been sick (in pain or actually ill) off and on the last two months. Mostly pain stuff, which my medical team and I are trying to get a grip on. It lays me up for days and days at a time; I've pretty much given up explaining what's going on to anyone but my inner circle.

This month, I've been taking Opana on a trial basis -- in addition to my regular pain meds. While the pain control has been good, Opana's side effects haven't been good at all. The good news is, just as in when you're making a change in any operating system, you make ONE change at a time. I've been very stable in my, i.e.: the baseline which is "Jesse", for a while now. Unlike say, several years ago, or worse, back in 2001-2002 when I had just had the neurosurgery and was completely in the fog. So when the Opana threw me off a bit, in some very specific ways, I was able to sort out what was going on, fairly quickly and report.

After meeting with a key member of my medical team today (er, yesterday -- Monday) we've put the med on my allergic/contraindicated list:

  • Neurontin (gabapentin)
  • Effexor (venlafaxine hydrocholride)
  • Celexa (citalopram)
  • Lyrica (pregabalin)
  • Opana (oxymorphone HCI)
All five of these meds were either directly to treat pain, or for helping my nerve's electrical system work better. In some cases, both. FAIL.

It took years to work out the medications I'm on now. YEARS. And when pain happens which isn't controlled -- as I currently have in my right hip (from the car accident) which impacts my ability to walk (from an old ski injury on my left knee) -- it takes a while to figure out precisely how to control the pain. It's vastly more important to get it right, than to throw any damn thing up there.


Because these chemicals impact your brain. They change who "you" are. Literally, too much, too little, the wrong dose, the wrong med, and "you" go away. Who is there? Not you, sucker.

Maybe a younger version of you (an emotional teenager or twenty year old) with the memories you have? Maybe a paranoid, someone who is violent or repressed, asexual or very sexual, scared or angry, dominating or with almost no emotions...

Pouring brain-altering medicines directly into the bloodstream, fracks with who you are, right now. And "you" won't know it unless you and your entire medical team:
  • has a long base-line on who "you" are,
  • is actively looking for changes,
  • is super-competent to detect changes,
  • you have a support structure at home, work, and with your medical team prepared to work with you as the medicine is adjusted till it works properly, and is unafraid of changes in "you", and
  • confident in their and your ability to return you to baseline.
Once, shortly after someone learned that I take pain meds, this asshole (who I was fighting with at the time) talked about my health in one of her/his comments to me, saying in effect, "I just don't trust your judgment anymore. Maybe your meds are off?" It wasn't a friend doing me a favor; it was a fuck-you. I blew that person off forever. Done.

Chronic pain patients; chronic patients of all kinds, do what we can do, when we can do it. The adjustments take however long they take. I write what I can, when I can. Pain is there till my Team and I figure out a way to make it go away, without taking "me" with it (or regressing or losing "me" in the process.) I am one of the key parts of all of this. Only my children, I, and a few key members of my medical team, can tell my Team as a whole, if "I" am still there. Which means sometimes, I have to trust, for example, Kyle's judgment or my therapist's judgment, over my own. Even when I am certain about something, if they say otherwise, under certain circumstances (like after certain med changes), we go with their assessment as to who I'm being, over mine.

I never lose sight of how fortunate I am. I have medical insurance. Good medical insurance. It pay co-pays at Tiers 1, 2 & 3. Even though I have to pay over $200 a month in prescription co-pays, I can handle that. This new tier 4 & 5 pricing as talked about today in The New York Times would make it impossible for me and others so situated to survive my kind of pain. Self-medication (a slow suicide) is the traditional option... booze and street-drugs. These not only cost too much -- thousands of dollars a month -- but they work poorly, as well as causing massive damage to one's body. In many cases they are illegal.

I have friends who were hooked on horse for years. Decades in one case. Decent pain medications are a recent deal. And you need money; the poor and working class don't get the good shit. They get booze and street drugs, as our fathers and grand-parents did after their wars. Want the good stuff? You'd better be middle to upper-class, or owning class. Then you can have decent drugs, legal drugs, and not worry about getting busted, keep your job, and be able to afford everything through your health plan.

Did I say drugs? I meant, medicine.

Enough. Time to sleep on my big clean bed, let the pain flush away.