Spring, the Season of Misery, Drugs, Infusions, and Pain Specialist Visits

With physical activity comes pain, and this being my most active time of year, I live with exhaustion, irritability, despondency, a shoddy memory, attention problems, and near hysteria. Because it's damnably hard to say no to the one thing that gives me appreciable relief, I ran out of narcotics early last month, and the withdrawal symptoms were like a rocket booster to my misery. (Actually, I go into withdrawal everyday of my life because I take my day's supply all at once.)

Today, I saw two pain specialists, the first (Tom) was the doctor I went to for a Ketamine infusion three weeks ago and then went back to for two Lidocaine infusions. Since these things didn't help, I don't anticipate seeing him again. The second one (Frank), I've been seeing for many years, but like nearly all doctors anymore, he works for a mammoth medical group, and one of the limitations he has to live with is that he isn't allowed to administer drugs by infusion, which is why I went to Tom. When I saw Frank today, we discussed Tom's proposal to switch me to another (even stronger) narcotic and the fact that I had turned him down because it would have overridden Frank's order.

Frank agreed that the drug proposed by Tom would help stabilize my moods (I go from heaven when I take my daily narcotic dose to hell when it wears off). He then offered to prescribe it for me, but he said I needed to know that, since the drug has historically been given to addicts to wean them off heroin, it carries an unfortunate association that might haunt me down the road. Because I'm adamantly opposed to anything that might make a future doctor hesitant to prescribe narcotics, I told Frank that I would stay with what I'm on.

I then asked Frank to put me back on Ativan, which I've taken in the past in conjunction with narcotics. The benefits of Ativan are that it evens out the narcotic-induced mood swings, and that it helps keeps me from going to pieces when the pain is especially bad. Frank said that, unfortunately, a "black box warning" was recently issued in regard to prescribing downers and narcotics for the same patient, and that he would lose his license if he ignored the warning, and I ran into difficulty. Moreso than most doctors, Frank chafes at being forced to play games with the government and insurance companies, and on this occasion, he made his distress known with mild profanity. Doctors so seldom curse in my presence (I can only think of two that have done it) that I'm flattered when they do, the implication being that they trust me to not make trouble for them.

Yet again, I raised the issue of CBD, as I have done a few times in the past year. CBD is made from hemp and/or marijuana, and some people swear by it for chronic pain, but it too comes with a problem. Specifically, the consumer has to trust the manufacturer to truthfully state the product's THC content, and manufacturers have proven unreliable. What this means is that if I'm called in for a drug screen (which rarely happens but is always possible), and I test positive for THC, my narcotic prescription could be in jeopardy. Frank gave me his word that, unless my THC level repeatedly came back outrageously elevated (which shouldn't occur with any brand of CBD), he wouldn't pull the plug on me, but here again, I worry that something might end up in my chart that could cause me a problem down the road.

As my visit drew to an end, I again raised the possibility of trigger point injections. This is where a doctor takes a big needle (with a drug in it) and jabs it repeatedly into various parts of a muscle to relieve the horrible tightness that I live with and that never goes away. I've been there/done that with Frank, and although it didn't help, I'm desperate enough to try it again. He then told me something else that I didn't know. Specifically, he said that every doctor has a different technique, so it could be that I would have better luck being poked by someone else. 

Because I am not eager to see yet another doctor, I asked Frank if he really thought it might make a difference. He said no, and gave me two reasons. One was that I'm sufficiently thin that it's easy to find the appropriate places to poke. The second was that he's more aggressive than most doctors, so unless his previous attempts have caused me so much pain that I simply want a gentler doctor who pokes fewer holes, I would do well to stay with him. I had no idea that doctors' needle-poking aggressiveness varied (having never had anyone but Frank do it), and I told him that I would prefer that he be even more aggressive because I really need relief, the flipside being that I don't want to be poked by some doctor who's trying to avoid hurting me. I had wanted him to stick me then and there, but because I could tell that he was slammed for time, I suggested that he do it later. Maybe he would have suggested as much himself, but when I like a doctor, I do everything I can to present myself as an easy patient.

What It Was Like

The Ketamine infusion left me tired, cold, and nauseous, with a metallic taste in my mouth. Hell, for me, would be an endless repetition of Ketamine. In fact, I think I would altogether lose my mind after several hours, which has surely been the fate of thousands of lab animals. Even after a mere two hours, the doctor himself wheeled me to the car so Peggy could drive me home.

The nurse who started my IV said, "You might feel like you're floating around the ceiling." It was a gross understatement, because every time I thought the drug had peaked, it laid further waste to my sense that I existed. I became like a compressed ball, a black hole of nothingness, yet I recognized the place Ketamine took me as though I had been there before. I looked in vain for something solid on which to anchor my identity but the more the Ketamine took hold, the harder this became. The room lights had been turned low, but I was seated, as I requested, away from the others in a corner near the door under a softly shining pole lamp. I had brought four books because I had no idea if I would be able to read or would be reduced to looking at photos. Of the four, one was the spiritual memoir of an agnostic, another discussed the spiritual life of dogs, and the final two were oversized books of cat photos. I settled on the cat books, reveling in the beauty of my favorite breed, the ancient and sensuously beautiful Turkish Angora, but when I switched from book to book, the one I was putting away seemed to float downwards while the one I was retrieving floated upwards, my hands following rather than moving. 

Time, space, and even existence came to be mere intellectual concepts, and I had no idea if the music and the whisperings I was hearing came from within or without. When I could no longer focus on cat photos, I tried sitting with my eyes closed, but the blackness pullulated like maggots on a carcass, so I returned to my books. Many things cause me to feel alienated from my species, none moreso than that it allowed the flat-faced deformities called Persians to so displace the ethereally beautiful Angora that the Angora barely escaped extinction. I smiled when I reflected that I have come to adore cats with the same intensity that I once adored women, and that it was the cat photos that were making the Ketamine bearable.

A bed (patients could choose whether to sit in a recliner or lie in a bed) separated me from the other five patients and I could only see the upper bodies of the two nurses, Linda and Vanessa. I would look at them, let what seemed like several minutes pass, and then look again, but they would be in the same place and in the same posture, leaving me to feel frozen in time. I sat opposite a sink, and the cabinet's drawer handles turned into melancholy faces. The nurses, the doctor, and the other patients moved in and out of the room in slow motion like shadowy, surrealist performance artists for whom movement was its own end. Reality became an Ingmar Bergman movie. I had been warned that the drug would make me diurese (which I assume is why the other patients kept leaving the room) so I stopped all liquids three hours prior to the infusion. I was glad for this because I could have neither said that I needed to go or have gotten to the bathroom unaided.

I would occasionally move an arm or leg because it seemed like the right thing to do, but I felt no connection with the seemingly distant flesh that was mysteriously obeying my commands. I kept going back to the same two Angora photos, and despite being enthralled by the textual description, I had trouble remembering the preceding sentence. I imagined that I was leaving visible fingerprints everywhere I touched a page, and this led me to fantasize that I was creating the book out of nothingness. I remembered that Ketamine causes brain damage, and I knew this was true because I was watching my mind disintegrate. If a bear had entered the room, I honestly don't know if I would have been able to flee. I was in awe of the fact that I had once walked, talked, and done the many things that normal people do, and I seriously wondered if I would ever do them again. 

Every time I thought I had reached a peak of disintegration, the Ketamine took me even higher. Like a stealthy shadow, Peggy entered the room, and I saw her with new eyes, a part of my high, a part of my movie, a knowing participant in the existential joke. She looked drawn and worried because her husband was wasted, and Peggy hates being around wasted people, and because, while I was receiving the Ketamine, she had taken Ollie to the vet for the same problem he had two months ago. Now as then, the vet didn't know what is causing the hair loss, but he charged another $175 to guess. He proposed a treatment that Peggy declined because it was toxic, and because she didn't trust him to know what he was talking about. He finally gave Ollie the same two shots that had temporarily helped before.

I think I might have succeeded in whispering a short sentence to Peggy, and I'm sure I nodded my head, but she soon drifted away, phantom-like, to sit in the car with Ollie. She returned when the treatment was nearly over, and this time I giggled and made gestures with my free hand, but I mostly tried to avoid disturbing my fellow patients. It worried me that I was among strangers and expected to maintain a decorum that had become impossible for me. Fortunately, when the Ketamine was withdrawn, I regained the ability to at least speak--however stupidly--and I was even able to stand, although I was too weak and dizzy to remain standing. 

But did it help? My pain level had been higher than usual lately, but it had dropped appreciably before the Ketamine, partly because I was done with the yardwork that had aggravated it, and partly because I was psyched to have a new direction for treatment. Doctors ask their patients to score their pain level on a scale of one to ten, with ten being the worst imaginable. I hate this because every number is a lie, but doctors demand it, so I gave mine a three going in and a one coming out. I think the anti-gravity recliner might have helped more than the Ketamine. My lowered pain score led the doctor to ask if I would like to come back in two weeks for a higher dose, and I said yes in order to keep my options open. Today, my pain level is higher than it was yesterday prior to the Ketamine, but what of Ketamine's promise of providing quick relief from depression? I don't know. Perhaps, I'm better, but I'm still so shaken by the Ketamine trip that I really can't tell.

Once home from two hours of constant Ketamine, I wanted to settle my mind by watching something happy, so I settled on a documentary about Roger Ebert. I knew he would die at some point in the film, but I assumed it would come at the end, so I was horrified when the film opened with him sitting in a hospital bed with his mouth hanging open and his bandaged neck visible through his mouth. I unsuccessfully tried to deny the reality of what I was seeing, but soon realized that his tongue and lower mouth had been removed, and that his chin contained no bone, which was why it was hanging open like a flap. I remembered Peggy's father's preacher's wife who so trusted in Christ's promise of healing that she refused to see a doctor for oral cancer, only going when it was too late to save her nose or her face from the roof of her mouth down. I don't know how any of us survive decades on this nightmarish planet, and Ketamine seemed like a new hell in a parallel universe.

I persevered with the documentary just as I had persevered with the Ketamine, stubbornness combined with my fear of looking afraid having, for good or ill, gotten me through a great many things. When I got into bed last night, Ollie ran, not walked, to join me. Every night he does this, and every night, he continues the ritual by rubbing his scent upon my book and bedside table. Then he stands upon my thighs and gazes into my eyes lovingly while kneading my abdomen. As our statue of Bastet looks down in divine approbation, I kiss Ollie tenderly, and tell him he's my handsome man. Last night, I asked him if he's worth all the money we spend on him, and he answered by slowly blinking both eyes in tenderness and trust. 

He's now on the chair beside me, taking his late-morning nap, and I am rapturous in the knowledge that it's money that enables me to provide him with what I lack, by which I mean a belief that the universe is safe and that our life together will go on forever.

Going down the K-hole

I slept no more than five hours last night, partly because I rarely sleep well anyway and partly because I was nervous about having cataract surgery today (I'm posting this two days after I started writing it, so the surgery is over), but mostly because I'm euphoric over the prospect of receiving my first Ketamine infusion next week. The pain that I've lived with for years has various causes and afflicts me in various parts of my body, but the worst of it consists of soft tissue back pain that started when I broke my back in 2016. J___, my pain specialist, has done everything he knows to do, but nothing has worked, and I've often thought about seeing a pain specialist named L___ who gives Lidocaine infusions, something that J___ isn't set up to do. I didn't because I had little confidence that Lidocaine would work, but mostly because I feared losing my monthly oxycodone allowance. When I heard that L___ is offering Ketamine infusions, I ran not walked to make an appointment. I saw him yesterday, and he agreed to start me on Ketamine next week. The treatment will take two hours, and will have to be repeated every month or so. I figure that even if it doesn't relieve the pain, it will surely diminish the severe depression, and anything that helps with the one helps with the other.

Ketamine is sold illegally as Special K. The common term for the high is falling into the K-Hole, but it's also called, and I kid you not, God. It got these names because it takes users out of their bodies (some people even forget that they have a body) and causes hallucinations. Because such things can lead to panic, L___ adds a benzodiazepine (a family of downers that includes Valium and Ativan) to the IV. He said that, even with the downer, those who enjoy Ketamine most benefit most, and that some of them drop from a chronic pain level of seven all the way down to zero. 

I anticipate a lovely trip, but Peggy doesn't see it that way. Peggy says there's something wrong with people who enjoy drug trips. Peggy says I shouldn't even talk about such things, even with her, and this inspired me to chant, "I'm going to get wasted in the doctor's office; I'm going to get wasted in the doctor's office!" Peggy then complimented me on my emotional maturity, and I complimented her on hers. Ours was a veritable love-fest of respect and affection.

I reminded Peggy of what L___ said about Ketamine's efficacy being enhanced by enjoyment, but she wasn't swayed. L___ said I'll need her to drive me home. L___ said that she can be at my side during the infusion as long as she's supportive, but I worry that such support as she is able to offer will ring false, and that I'll be too vulnerable to shrug it off. 

Many years ago when I took every hallucinogenic that I could find, I discovered that if I took them on a sunny day amid beautiful surroundings, and was either alone or with a trusted friend, I would have a good trip; but if I took them at night, at a party, among people I didn't know or trust, and in an unfamiliar place from which I couldn't easily escape, the result was so frightening that I couldn't move or speak. When people noticed my distress, they would stop talking and stare at me, causing me to feel like an insect upon which the sun was being directed by a a magnifying glass. An infusion lab means strangers, strangeness, clinical sterility, and the expectation of decorum, but L___ suggested that I bring peaceful music (I anticipate Bach or Vivaldi), and I anticipate sitting with my eyes closed.

But why did I take drugs that cause hallucinations and dissociation in the first place? Three reasons: curiosity; a desire to test my psychological strength; and the hope of seeing God. I failed the mental toughness test, and God never came, but the visual manifestation of creatures more frightening than a Bosch painting did, but only when my surroundings were wrong. When my surroundings were right, the universe became physically beautiful and morally benevolent. On the night that I went on my worst trip, I eventually founding myself alone in a completely darkened room, where I spent the next several hours enthralled by an ethereally beautiful kaleidoscope of light, safety, and color. When dawn came, I watched water oaks do a joy dance across the Louisiana Delta. On another occasion, my mind created the wildest and most beautiful electric guitar music I had ever heard, and the music lifted me into the air while I sat in a chair. These unreal experiences rank among the most joyful, memorable, and enriching experiences I've ever known.

Next week, I take a drug that will hopefully cause my spirit to soar, both in the short-term and the long-term. "Some people walk into the clinic with a pain level of seven, and walk out with a zero," L___ said, and I am happy to think that it might be so.