Pain and Pot

I wrote a month ago about some digging I was doing, and how well I seemed to be tolerating it. Well, that came to an end, and as a result of that work, I’m in constant pain, especially in my right shoulder which grinds with every movement and often feels as if it’s about to slip out of joint. I was prepared for the pain, but I wasn’t prepared for the noises and the loss of motion that makes everyday activities (opening blinds, making beds, lifting a coffee cup) angst-laden and downright scary.

Marijuana is the only drug that helps much (both with my pain and my attitude), and it’s the only drug that doesn’t put me in fear for my life (the chart only lists a smattering of the side-effects of my current narcotic), so I’ve been high pretty much all day everyday for weeks. The pot relaxes me, although it also makes my mind leave the vicinity of my body rather easily. For example, I took my first hit of some new bud while making breakfast yesterday, and immediately wanted to listen to music. There I was in the kitchen recalling that the iPod was in Peggy’s room when, voila!, I was holding the remote to her iPod player. Unless thought alone moved that remote, I had gone to her room and gotten it, yet I had no memory of doing so, and it wasn’t even what I wanted. “Oh, well,” I said to myself (it’s good to stay relaxed at such times because the other option is to feel as if a malevolent force had yanked your brain right out of your head and buried it) as I poured honey on Peggy’s oats, forgetting that Peggy doesn’t like honey on her oats. 

These are extreme examples, but they point to the nature of marijuana-induced forgetfulness. What I usually find is that when I want to concentrate, I can (sometimes better than normal), but when I’m doing mindless chores, my thoughts are more likely to be somewhere other than on the task at hand. This is good in that it makes boring work agreeable, but it also means that I can’t hold myself to quite so high a performance standard because I’m really not “all there.” As for work that requires concentration, I can conduct business, balance the checkbook, use power tools, and figure out how to get back into my Blog when Google locks me out. I’m high as I write this blogpost, so you can see that the drug doesn’t make me altogether stupid. In fact, it can make me smarter, at least in understanding my own perceptions, thoughts, and feelings. Sometimes, I won’t even know I’m mentally or emotionally stuck until I use marijuana, and I feel as if I’m standing in a room dimly-lit by the setting sun on a gray day, when suddenly a huge bank of fluorescent lights come on. 

Being high on a relatively innocuous drug is hardly the worst of the possibilities when my desperation to do real work (meaning physical work) has resulted in my inability to do so much as drink coffee without pain. If the choice is between being high versus being in more pain than need be and despondent to-boot, I’ll choose being high. It’s a strange way to live, but with luck, my shoulders will recover somewhat, and I can become active again. If not, I’ll probably become active again anyway because I don’t do well with sitting around.

For those who live with pain

I take the following for pain: Neurontin, Ambien, oxycodone, marijuana, and Cymbalta (an SNRI—selective serotonin and norepinephrine reuptake inhibitor). These drugs are what’s left of the 25 or 30 I’ve used, a list that includes every legal narcotic I know of, a half dozen sleeping pills, various anti-inflammatories, and, for good measure, Elavil. Cymbalta (see photo) has helped most, but, due to insurance changes, my cost for my next prescription will be $607 for a 90-day supply. While looking online for substitutes, I learned that Effexor (another SNRI) is equally good for pain and, because it has been around since 1994, comes in a generic form for $12.32. 

The high cost of Cymbalta is why, if you live in America, you are barraged with Cymbalta commercials, whereas you never see Effexor advertised. Along with price, other disadvantages to the latest “miracle drugs” is that their long-term downsides are unknown and they are rarely more efficacious than older drugs. So, why did my doctor prescribe an expensive medication before trying me on a dirt-cheap drug that is likely to be just as effective? Hell if I know, although I’ve noticed that doctors don’t usually know how much drugs cost. They also used to get kickbacks from pharmaceutical companies, although my understanding is that the government put an end to this.

It’s good to remember that you’re probably in a better position than your doctor to know which drugs might help you. For instance, if you suffer from ongoing pain, your medication options are limited, and with a little effort, you can learn what they are and stay abreast of the latest research. Of the drugs I’ve tried for chronic pain, I would say that narcotics are both the most heralded and one of the least effective. I mention this because some of you have trouble getting narcotics, and, as a consequence, appear to hold them in higher regard than they deserve. The reason for their relative ineffectiveness is that you quickly build up a tolerance, so if your starting dose is 5-10 mgs, you might be taking six times that amount (and incurring six times the risks) after a few weeks and still not get as good a result as you had with your initial dose. It is for this reason that I try to limit my narcotic intake to twice a week, but even then the tolerance problem remains. 

No doctor ever told me to take more than 20 mgs of oxycodone or Dilaudid at a time. This used to leave me in the troubling situation of thinking that, my god, I’m taking this strong narcotic that people rob pharmacies at gunpoint for, and I’m still in terrible pain—my condition must be hopeless. When I increasingly turned to the Internet for drug information, I learned about narcotic tolerance, and realized that my doctors simply weren’t taking tolerance into account, so I started increasing my own dosage, but no matter how much I took, I soon needed more. (If you should ever consider increasing drug dosage without your doctor’s consent, bear in mind the following statement from the American Centers for Disease Control and Prevention: “In 2008, more than 36,000 people died from drug overdoses, and most of these deaths were caused by prescription drugs.”)

Rather than the prescribed strength being too weak, I’ve also seen it go the other way. For instance, if I had used that 100-microgram Fentanyl patch that one doctor gave me, I’m pretty sure I would be dead. After another doctor started me on a triple dose of Demerol, I could hardly get out my chair for three days. Such overkill (ha) is another reason that you should do you own research.

Because of my positive experience with Cymbalta, I’ve become very interested in anti-depressants for pain relief. Some of you might know that the old tricyclic antidepressants (Norpramin, Tofranil, and Elavil, to name a few) have long been given for pain. Then came the SSRIs (Prozac, Lexapro, and Zoloft are three that I’ve taken), which weren’t good for pain by themselves but were good in combination with a tricyclic. The next advance was the SNRIs (Cymbalta, Effexor, Pristiq), which are effective for the pain of arthritis, fibromyalgia, and neuropathy, along with depression, panic disorder, social phobia, and obsessive-compulsive disorder.

As you can imagine, any drug that can do all that can also kick your ass, as I discovered when I stopped taking Cymbalta cold turkey last November and felt utterly exhausted, experienced excessive scalp sweating, had symptoms approximating the early stages of a horrendous cold, and wanted to rage one minute and cry the next, symptoms that continued for nearly two months. Since I had stopped taking narcotics at the same time, I assumed I was suffering from narcotic withdrawal and so did my doctor. When I finally went online, it didn’t take me any time to become convinced that it wasn’t the narcotics, it was the Cymbalta. Why didn’t my doctor know this? Maybe he didn’t sleep well the night before, or maybe he was thinking about his last patient or the fight he had with his wife that morning. I have no idea, but I do know that one should never go to any doctor with the assumption that everything that can be done will be done, and that it will be done right. I’ve experienced situations in which so many mistakes were made by so many people in so short a time that I imagined myself trapped in a Monty Python skit.

I’ve gone into some detail about anti-depressants for pain control because Cymbalta has worked fairly well for me without severe side-effects or a tolerance problem. It’s important to remember that chronic pain causes anxiety and depression, problems that worsen the pain, and that anti-depressants have the advantage of treating these along with pain. The worse downside to Cymbalta—so far, anyway—is that, having been through drug withdrawal a few times by now, I worry more about drugs that cause withdrawal than I do about drugs that I can easily stop. Whenever I start to focus on such concerns, I remind myself that living with pain and depression pose their own serious health risks. For example, chronic pain makes a person more prone to accidents; depression impedes his immune system; and the two of them together make it impossible to get adequate sleep. I, like so many of you, can no longer imagine a drug-free life despite the fact that I anticipate dying earlier because of it.

I have found living with pain—and the resultant disability—to be a major challenge to my desire to live at all. Many people experience this, and because of it, I have a great deal of sympathy for other sufferers. We share a problem that can be very hard to treat and that many people don’t understand (especially if you “look normal”) and often seem bored by. I do understand what pain sufferers are going through, at least somewhat, and I am far from bored by it. Just as some of you worry about me, so do I worry about you. I am hardly the worst-off of those in my blogging community, and I can thank many of you for helping me keep my head above water.

5 Things: none of them about religion

Ellie has lived next door for nine years, and is like a sister. In a few months, she will move 1,000 miles away, and Peggy and I are both very sad.

Walt came by last week. He was best friends to both Peggy and me for a lot of years, but hasn’t been our friend for about eight years, and it wasn’t an amiable parting. If I hadn’t sent him an occasional email during the past eight years to ask how he was, we wouldn’t have heard from him at all. He came by to tell us that he was diagnosed the day before with malignant melanoma, the tumor reaching two inches across before he saw a doctor. Peggy and I went to the hospital today to wish him luck as he went into a hastily arranged surgery. We arrived to find his wife berating him, and his father-in-law looking like he wanted to cry. I added to the ambiance by sitting in silence reading the obituaries (as with the tombstone in the picture, many of the deceased were my age) while feeling sick, sad, and distant. Only Peggy offered any real support. 

Six weeks ago, I had sudden onset fatigue so severe that I couldn’t stay out of bed for more than an hour or two at a time. I seriously thought I might die so, not knowing what the problem was, I immediately stopped taking oxycodone, Neurontin, Ambien, marijuana, and Cymbalta (I’m back on marijuana and Ambien). In the wink of an eye, I fell over an emotional cliff. Now, I still have the chronic pain problem for which I was taking all the drugs, plus I have fatigue, fever, sweaty scalp, depression, irritability, tremulousness, scratchy eyes and throat, and a tendency to drop things. All this, and I still don’t want to go a doctor because I get tired of the same shit happening. To whit, the first doctor sends me for various tests (some of which might be dangerous), and then I get tossed back and forth between specialists (and their tests) for anywhere from a few months to a few years. After shelling out $4,000 before insurance pays the first penny, having up to three surgeries, making countless calls to insurance companies and billing offices, and being put on even more drugs, I still have the problem. If I’m lucky, it’s just not as bad as it was. Of course, by not going, I could end up like Walt. I know that, but still I don’t go.

It’s winter in Oregon. Month after month of almost nothing but gray and drizzle, except for a couple of periods during which the sky clears for a few days, bringing with it wind, cold air, and a sun that stays too near the horizon to be really cheerful. Peggy enjoys life here and has no trouble with the weather. I like many things about Oregon, but it’s only her desire to be here and the presence of a few friends that keep me.

Peggy and I getting rid of a lot of things today, mostly keepsakes. I am very pleased about this because I am finding it increasingly difficult to clean house. We celebrated our 41st anniversary in December. She has been a good wife.

It was a Hitler kind of week

I unintentionally lost seven pounds in six days last week, my only other symptom of illness being fatigue so severe that it kept me in bed for much of the time. Because I regularly take pills for nerve pain, pills for arthritic pain, and pills for sleep, along with marijuana and strong narcotics, my first thought was liver or kidney failure, so I stopped taking everything. I knew I would be in more pain, but I had no idea how bad it would get. My shoulders, my back, my hips, the hand that I broke last summer, and my upper legs and knees, were all screaming at me, and I could do nothing for them. When I couldn’t sleep in bed, I moved to the recliner that served as my bed for eight months out of the twenty-four that I was having surgeries, but I couldn’t sleep there either.

I didn’t want to go to the doctor because there are a lot of bad colds going around, but when four days passed, and I was little improved, I decided that I had to go because I wasn't holding up well under the pain, and because I thought I might be so ill that my life would be jeopardized if I waited. He took some blood tests, and I went home to await the results, practice having made me fairly stoic about such things. Peggy came down with a cold that night. The tests came back yesterday, and to my very great surprise, they were normal. The doctor speculated that, whatever the initial problem had been, my later fatigue and weight loss had been due to narcotic withdrawal, so I’m back to taking pills and eating marijuana cookies (but no narcotics). If not for the pain and fatigue, I would have enjoyed seeing the universe without a haze around it. I hadn’t realized how absent from the external world I had become, even though it had been a welcome absence for the most part. I mean, between hurting bad and being loaded, which would you choose? Duh. 

When people talk about the redemptive power of suffering, I think they’re full of shit. They’re invariably people who have no firsthand experience of what they’re talking about, at least when it comes to bad chronic physical pain. Imagine that you have the worst toothache you’ve ever felt, that it’s untreatable, and that the only thing that will even reduce the pain by half might cause you to sicken and die. Is there anyone on earth who imagines that he would gain from that? If there is, bring him over, so I can slap some sense into him. My life is a war of attrition, and every year I lose more hope, feel more pain, and become more disabled, and I’ve yet to meet anyone in my situation who is doing any victory dances. 

I can’t say that pain hasn’t given me insights, but they’ve been insights about how really bad life can hurt, how little can be done about that, how little support anyone can give, and how utterly tedious it all becomes, both to the sufferer and to everyone he looks to for support. I never dreamed that my life would turn out like this. Quite the opposite. I thought I would be strong and capable almost until I died, and now I’m wondering how much longer I will able to clean house. It took me three days last time, and it’s not even a big house. 

I think it likely that the only thing that keeps me alive is Peggy (I’m grateful for this), but she is also the person who suffers the most because of me, and that alone is enough to bear. I can only justify my life by bringing good into hers, and I rarely feel that I do particularly well. I have observed little difference in whether pain is physically or emotionally based because either way, the struggle to overcome (or to at least adjust) is likely to be longterm, intense, and a pain in the ass of ones partner. I guess I can give myself credit for doing the best I can, but how would I really know?

P.S. Yes, I understand. I could be worse off, much worse off. I probably know that better than those few who try to remind me of it because living with pain has improved my ability to sense pain in others. It’s like if you bought a red Toyota Camry, and all of a sudden you notice how many red Toyota Camrys are on the road. But, more than that, you have become deeply interested in red Toyota Camrys. Rather than bore me, people who tell me about their pain fascinate and encourage me.

You who read this blog regularly will remember that I had a period last summer when my pain level dropped by 90%. It lasted for about three months, and since then, the pain has kept getting worse. Those three months were the first time in a few years that I had seriously dared to hope, and when the pain came back, they just made it the harder to bear.