Today's barely edited

I didn’t feel old until a year or two ago. I attribute this sudden oncoming of antiquity to the pain. Except for misdiagnosed sleep apnea (which cost me two needless surgeries) and the pain of the last six years, I’ve been healthy as an adult. In fact, I used to marvel at my good health because I would — sometimes for months—feel such sadness that I was just sure it would eventually eat its way from my heart and into my flesh, causing me to sicken and die. The fact that I stayed in such good shape was curious to me.

Then came the sleep apnea, and I grew increasingly desperate over a period of five years until it was diagnosed and treated. Three years later came the pain. For the longest, I thought I would beat it. I told myself that my species, despite its many faults, is very clever in various ways, and that medicine has been one of the major benefactors of the explosion of knowledge that has occurred during my lifetime alone (I would have died had the sleep apnea hit 15 years earlier). How hard, therefore, could it be to eliminate my little old pain? It might be impossible as it turns out.

For much of my life, I held doctors on such an intellectual pedestal that if a doctor couldn’t cure me of something, I would assume that he wasn't trying hard enough—maybe he hadn’t run the right test or asked the right question. I later met doctors whom I trusted as good men as well as good doctors, and when they told me there was nothing they could do, I believed them. Even with this recent pain and the urging of one reader to see a pain specialist, I have no thought of seeing a doctor. For what? Pills? I’ve got pills, and if there were other pills, I would know about them. Dosages? If I want to dicker with those, I have more confidence in the Internet than I do in any given doctor (I've discovered two serious errors in my prescriptions by looking them up on the Internet). Tests? Diagnoses? Surgeries? I could probably get several more of each if I wanted to start from scratch with new doctors, but I don't.

Maybe my "barely edited" experiment is connected with my need to transcend the pain because while I've lost all hope of escaping it completely, I haven't lost faith in my ability to someday live well despite it. I think at least one of you might have worried about me euthanizing myself after my last post, but I wouldn’t do that. I thought a lot about it for a long time, and I must have decided against it because I don’t dwell on it much. Not that I was ever really close to suicide; it’s just that I considered it a reasonable and reassuring option. If you hurt as I do, and you killed yourself, I could respect you for it if you only had yourself to think of (If you were married, I would consider it necessary for you to get your spouse's blessing to kill yourself it unless your spouse opposed suicide on principal). But even if you were alone or had your family’s blessing, I would suggest that you hang in there. You’ll be dead-meat in a few years anyway and you'll stay dead for all eternity, so why not stick around? You might do some good, you might have a few laughs, and you can always decide to off yourself later.  

The photo is of me, from yesterday. It did me good to go to the woods.

Fentanyl

So, I go to the doc, and I say, doc, I want a prescription for Fentanyl, and he says, okay, since your life won't ever contain anything but misery anyway, you’ve got it. Then I say that I don’t want some candy-ass dose, I want enough to know that I’ve taken something, and he says I needn't worry my pretty little head about that.

I pick up my Fentanyl—which I’ve never had—and I stick one those 50 microgram per hour patches (Fentanyl is 100 times stronger than morphine, and is measured in micrograms rather than milligrams) onto my belly, and sit down to read the directions. Shit, I discover, this dosage is the equivalent of 68-112 mgs of oxycodone, an amount that I should think would almost certainly kill me. Reading on down, I find that, yes indeed, if I haven’t been taking that much oxycodone day and night for at least a week, Fentanyl will hit me about as hard as a ten pound horseshoe (this was underlined and in bold letters, only without the part about the horseshoe). Whoa! I hardly ever take oxycodone or any other narcotic anymore simply because I’m unwilling to keep piling ever higher doses of dangerous drugs into my body, yet here I am with enough Fentanyl on my belly to, to, what? –kill a horse. Yeah, that’s it; kill a horse. I consider ripping that patch off right then and there, but I first run what I had read by Peggy (my resident nurse who was doing a Sudoku at the time); she doesn’t seem alarmed.

Okay, I remind myelf, I told the doctor what drugs I take, and Peggy knows what drugs I take, yet neither of them are worried, so, unless they’re trying to kill me so they can run away together, maybe I shouldn’t be worried either. I am though. I’m real worried, but I don’t want to take the patch off because the first commandment of my religion forbids the waste of good dope. Since it takes up to 24 hours to achieve maximum absorption, I figure that, well, I’ll just see how I’m feeling as the night passes, and with that happy thought, I go to bed. After five minutes, I can’t handle the fear anymore, so I get back up and use some pointed scissors to cut the patch in half while it’s still glued to my belly (carefully saving the half I removed). It looks solid—like a little sheet of plastic—so I figure what could be the harm since there’s nothing to leak out?

I go back to bed and congratulate myself on my sagacity, my perspicacity, and even my pederasty, but I don’t go to sleep because I’m way too happy to waste the night sleeping. Life has gone from ho-hum to highest heaven in less than an hour because of that little bity patch. Oh, but do I ever love Fentanyl! Forget sex, fame, money, power, luxury, and even food; all I will ever want and need from this day forward is Fentanyl. Take ten years off my life (or whatever I have left), but don’t take my Fentanyl. Yeah baby! I lie in bed certain that, having found such joy, I’ll never lose it—I’ve been down that road a few times by now.

I woke up around noon (I did sleep some) feeling sort of ground down, and, as Peggy and I had our morning cuddle, I told her about cutting the patch in half, more or less expecting her to praise me for my prudence. Instead, she flipped out, which pissed me off since she didn’t have a word to say the previous night when I told her I was wearing a drug patch strong enough to kill 50 Navy Seals. I then called the pharmacy to prove to my wife that she was wrong (that’s important in a marriage even when the issue isn’t anywhere near as important as a drug overdose). To my horror, the pharmacist—who was also a woman—flipped out too, and said I was lucky to be alive—dumbass that I am—because, although the patch looks solid, it’s not, and this means that I was still at risk of dumping three day’s worth of Fetanyl into my bloodstream all at once. Upon hearing this, I ripped that patch off like it was a rabid rhino, and then I sat down to finish reading the directions. They informed me that, in case of an overdose, I could be at risk of respiratory failure for 24-hours (this isn’t a drug that comes on all at once, so I didn’t trust myself to know if I had overdosed or not), and that I should be under intense observation. So, I observed myself, intensely. As bad as that marijuana trip was two weeks ago, I now looked back upon it with a certain nostalgia because never once during that long night did I worry about being dead before the sun came up again.

On surviving yet again

Miscellaneous experiences and reflections

Three shoulder surgeries in 25 months. If you don’t think that sounds like fun, you really ought to try it sometime. This was my first joint replacement though, and recovery should be easier because less soft tissue was involved, and it’s soft tissue that takes forever to heal.

I remember getting a nerve block just before they rolled me into the O.R. at 7:30 Friday morning, but the O.R. anesthesiologist must have cold-cocked me the minute I arrived because I don’t remember anything after my gurney hit the swinging doors. I don’t even remember waking up in recovery or being rolled upstairs to my room.

Because I’ve lived on narcotics for so long, they no longer work well, so my first night in the hospital was hell. I had a PCA (Patient Controlled Anesthesia) pump that injected a xylocaine-like drug into my neck, but when the main block wore off in the middle of the night, the PCA didn’t touch my pain, so I was given intravenous morphine, Dilaudid, and oxycodone, all within ninety minutes and all without effect. Nurse Jen then called Mark (my surgeon) and he told her to double the Dilaudid, but even that didn’t help.

Jen then said “I don’t mind waking doctors up in the middle of the night, so if you think of something else that might help your pain, you tell me.” It soon hit me that I needed Neurontin along with the Dilaudid, so Nurse Jen woke Mark up a second time and got me a prescription for 900 mgs of Neurontin, and the two drugs together enabled me to sleep three hours for a two night total of seven hours. (Mark hates the drug, and he knows that I know this, so I laughed about him being awakened in the middle of the night to prescribe it.) As you might imagine, Saturday sucked, yet if I hadn’t suggested the Neurontin, no one else would have thought of it, and I wouldn’t have gotten any sleep.

Thirty-six hours after surgery, I could barely walk 200 feet, and I needed Peggy’s assistance to go that far. Twenty hours later, I came home and walked 2,000 feet all by myself. Today—three days post-op, I walked a mile.

I won’t take a medicine unless I know what it’s for, and this meant that I sometimes turned down medicines while I was in the hospital. If I asked a nurse what XXX was for, and she said, “I don’t know, but it’s on your schedule, so you need to take it,” I didn’t take it.

After I was put into a room, I was surrounded by seven machines of one kind or another, and I was hooked up to four of them around the clock. I literally couldn’t stand up to use my urinal without a lot of wires and tubes becoming entangled. Also, some of these machines had alarms that kept going off for no good reason. I finally insisted that the worst offender be disconnected, and after three hours of serious bitching on my part, it was.

My main physical therapist was an Aussie guy who didn't want to talk about anything but his diabetes and his desire to move back to Australia for the government run healthcare. I kept thinking: “I wish you were there now, dude; I wish you were there now.” If I had it to do over I would have asked for another therapist, but all it takes is a moment of weakness, and some selfish bastard will steamroll you every time. I’ll still complain about him, but doing so after the fact will be less satisfying.

I think that most nurses and doctors respect a patient more—and treat him better—when he’s not mindlessly compliant. As for the ones who are bothered by it, I assume they’re on a power trip, or else they’re so lazy that they resent being forced to actually think for a change.

I had my yearly physical just before my surgery, and, just for the hell of it, I called my internist “Doctor Kirk” (Kirk is his first name). I hadn’t called him by his title since I started going to him 21 years ago, and he looked flabbergasted. I interpret an insistence on being addressed by a title as indicative of a need to have people brown-nose you, so I guess it’s just as well that I’ll never meet the queen.

The anesthesiologist who performed my nerve block was so concerned because I’m “not narcotic naïve” (meaning that I take a lot of narcotics) that he came by twice on his days off to check on my pain level. I wanted to leap out of bed and kiss him. Doctors like that are to die for.

I’m pretty sure that a nurse stole some of my Dilaudid, but I believe you should be 99% sure before you formally complain about such a thing, and I was only at 98.5% (although I did mention my suspicions to her).

I’m sure that some of you wonder if I’m ever tempted to pray given that I’m in chronic pain and have had numerous surgeries. No, I’m not. When someone tells me that their oncologist had “given up” on their Aunt Matilda, but that god dropped by and healed her cancer, I think about how much more impressed I would be had god re-grown her missing leg, or eye—or even her missing toenail. Funny how religious people only pray for things that might happen anyway. Why is this, religious people? Why not ask god to raise the dead or at least re-grow teeth? I mean, jeez, how difficult could a bicuspid be?

Finally—and for the hundredth time—allow me to warn you against ever allowing yourself to be intimidated by a lot of diplomas and certificates, or by a bigger than life personality. I promise you, you will occasionally have an idea that is so brilliant yet so seemingly obvious that you will be appalled that the experts overlooked it. Yet, they did because even the most brilliant, caring, and educated people suffer from the all too human tendency of falling into a rut.

Omniscient docs have all my money, so I hope they'll be sweet as honey and make me frisky like a bunny

Story I

Dr A, an internist, confidently announced after a single office visit that my LEG PAIN was caused by Chronic Regional Pain Disorder, a degenerative disease that becomes so painful that sufferers have a pronounced tendency to go insane and/or kill themselves.

Dr B, a pain specialist, was absolutely convinced after a single office visit that the same problem was caused by a completely different horrible disease, syringomyelia.

Dr C, a neurosurgeon assured me that Drs A and B were both wrong, but since she had no idea what the problem was either, she gave me a referral to Dr D. Since the pain is showing some signs of getting better on its own, I haven't been to Dr D.

Story II

After ordering thousands of dollars worth of sophisticated tests, Dr E, an orthopedist, insisted that my BILATERAL SHOULDER PAIN was due to arthritis.

Dr F, another orthopedist, was just as insistent that it was due to torn rotator cuffs.

Dr G, my third orthopedist, unequivocally disagreed with them both, and confidently diagnosed another problem.

Dr H, my fourth orthopedist, completely agreed with Drs E and F but completely disagreed with Dr G.

Dr I, a neurosurgeon, suspected cervical cancer and cut through the front of my throat to get a piece of bone from the back of my neck. When no cancer was found, she said she was certain that a series of fluoroscopically guided steroid shots to my spinal cord—administered by her practice partner—would eliminate the pain. When they didn’t, I went back to Dr G who performed two shoulder surgeries, each of which required a yearlong recovery. I’m now in worse pain than ever.


I’ll share just one more story. Peggy had a cyst removed from her leg in the 1970s. The doctor put an airtight dressing over the incision and told us sternly to leave it in place until our follow-up visit the next week. We lived in Mississippi at the time, and it was August, so this sounded like a really bad idea to us, but we ignored our qualms because, as we told ourselves, he was a doctor and we were school teachers, so what did we know.

As we feared, the incision became infected. My point is simply that you shouldn’t put a great deal of faith in a doctor simply because he or she has a medical degree and sounds confident (if people treated you like God Almighty and threw money at you like it was confetti, you would sound confident too). As for “modern medicine,” well, the term has a nice ring to it, but you’ll recall that the modern medicine of one era is the primitive blundering of the next. You’ll also recall that “modern medicine” labored for millennia in ignorance of bacteria and viruses, and that the original appeal of homeopathy lay in the fact that it was SO innocuously worthless that it didn’t regularly kill people as did the modern medicine of the early 1800s (buy me entire carton of a “powerful homeopathic remedy,” and I’ll drink it in front of you). This meant that instead of having to survive both the disease and your doctor’s ministrations, you only had to survive the disease.

I’m far from suggesting that you should feel discouraged though. After all, no drug or procedure is a complete failure if you live to tell about it, and if you don’t live to tell about it, well, your doctor at least succeeded in ridding you of your problem, so you’re actually a winner either way.

Things I love—a sequel to “Things I hate”

I love Peggy. She is kind and wise, and the best thing that ever happened to me.

I love baking crackers, cornbreads, and biscuits. I also love making soups and pancakes.

I love to write. I also love to read but not nearly as much as I love to write.

I love my new cat, Brewsky—aka Fuckface when Peggy isn’t around (“Isn’t that just like a man?” she would say.)

I love it when Peggy massages my shoulders each day.

I love the fact that, although I am in pain, I can still see, hear, and get around.

I love it that pain has made me stronger.

I love it that modern medicine has kept me alive when I would otherwise be dead.

I love camping with Peggy in remote areas.

I love learning about rocks and native plants.

I love oatmeal and mayonnaise but never together.

I love it that age has enabled me to give up most of my idolization of women. I love it that Peggy stayed with me during all the years before this was true.

I love having Ellie for a neighbor.

I love to dig. If I had my health back, and if digging didn't make such a mess, I could do it everyday simply for the joy of it.

I love living in the city instead of in the country.

I love it that I bike more often than I drive.

I love Peggy’s room, especially her “rabbit shrine” and her glass crystals that catch the sunlight and throw hundreds of rainbows.

I love PBS (Public Broadcasting Service).

I love a lot of Western movies and TV shows from before 1960 and a few after 1960.

I love it that I’m mostly unconcerned about what people think of me.

I love being able to do almost anything to a house that needs doing.

I love how much Peggy enjoys her button collection. I also love how much she enjoys her music collection and her Christmas ornaments.

I love my blog buddies.

I love Busby Berkeley dance numbers.

I love the beach, the desert, the forest, and the mountains.

I love keeping my house clean, orderly, and in good repair.

I love dark chocolate.

I love the bliss of narcotics in the middle of the night when pain awakens me.

I love the taste and the warm glow of hard liquor.

I love Baroque music. I also love cowboy music, both old and new.

I love the sound of an electric guitar.

I love my dog, Bonnie Blue, and I love my memories of dogs that have died.

I love cuddling in front of an old movie with a bowl of popcorn on a cold night.

I love having gained in prudence, knowledge, and wisdom over the years.

I love spring, summer, and fall.

I love coffee, strong and black.

I love making my yard look nice.

I love going to the nursery with Peggy to buy plants for our garden. I also love it when we go to Costco and say we’re having a “date.”