My husband has spent the better (actually the worst) part of many years living with a wife who was a ghost (I played the part of the ghost). Luckily for me, he wasn’t afraid to call a junkie a junkie and dragged me against my will somehow back to myself and away from the empty shell the ridiculously high amounts of Oxycontin prescribed after 5 spinal fusions made me; some surgeries successful, some outright disasters that left me full of floating rods and hooks and so much titanium and so many bones missing for grafts and a body full of scars as a roadmap of the violations. I feel like a human museum of scars; and my collection is AWESOME! Now, if I could just find a sideshow...
After so much pissing and moaning and complaints and ugly epithets hurled in my face like spit, I came to the realization that my husband wasn’t an asshole; he was trying desperately to save me except I was in the middle of it and I couldn’t see it or touch it or believe it so I denied it and he was the one who had to be wrong. He wasn’t. I began to gradually, carefully, very tentatively wean myself off the drug milligram by milligram; I was terrified of withdrawal. He sacrificed his sanity and his serenity, I was always ready to weep and blame it all on him because I was not addicted; the real problem was that he was just a mean asshole. No, I was positive that the 180 mgs of Oxycontin I was prescribed were NOT obliterating my personality and my wit. He was sure it was, and he was right. He loved me in the deepest sense of the word because he fought like hell to get me back from the meds and the screaming pain in my right leg that tormented me for 10 years and that, when I fell last week and collapsed a lung, just…stopped. I fell, and whatever was inflaming or pressing on the nerves near my right sacral joint moved, just a little. I still feel the anger welling up in my hip and leg in the evening after I've done too much, but I listen to it carefully and get off my feet. I am not messing with that angry nerve, no siree.
Everybody around here has heard all this and experienced so much of it with me; the process of writing it down, though, is totally different and feels more serious and less whiny than it feels to be in it or talking about it. By the time I was in the hospital with that collapsed lung caused by a fall I had taken in the house, I had already weaned myself down to 40 mgs of Oxycontin per day after a 10-year all-time high (no, no high, not at all) of a prescribed 180 mgs a day by legitimate doctors who offer a smorgasbord of painkillers and stimulants to fight the opiate effects, and antidepressants and anti-anxiety pills to people like me who battle chronic pain from that scoliosis and those five back operations. They prescribe because the only treatment they have is the prescription pad. I was lucky to find one pain doc who specialized in caudal epidurals done under fluoroscope; those shots gave a little relief, but they always wore off, and back came the neuropathetic pain down my right leg into my foot that felt like gasoline on fire. That gave me a little hope, at least, that there might be another answer for me out there other than the morphine pump (which I feared because they can malfunction and kill you with an overdose), an epidural pump (not an option for me my spine is fused from C-4 to C6, then T-4 to L-4 so there's no space between my vertebrae, thus no way to deliver the medication in a non-systemic way.
I had an epiphany last week in the hospital with that collapsed lung, though: it occurred to me that the pain meds schedule some doctor in the hospital had set up for me was this: 8am, 40 mgs. Oxycontin; 10am, two Percocet; noon, a Dilaudid pill; 2pm, back to 40 mgs. Oxycontin and so forth in a cycle that I think could easily have killed me because I was a patient with a chest tube and compromised respiration. I refused most of the painkillers except the Dilaudid because let me tell you, that chest tube and lung thing HURT! But I took no Oxycontin, which was good for my mental health, even though I knew it wasn't over. It left me with the question: what kind of doctor would set up a schedule like that?
One important lesson I have learned over the years from the successful surgeries and the broken ones and all the time in hospitals, in total body jackets and Philadelphia neck braces, and the entire surgical site discovered to be completely infected with Staph A, etc. is this: if your internal bullshit detector tells you a doctor is an asshole, don't let him touch you! Yeah, yeah, I know - you don't have to marry the guy. But if the guy is an asshole, that may wind up putting your life in jeopardy because he truly, deeply does not give a shit.
It is imperative that the person operating on you give a shit; otherwise, you may wind up with substandard aftercare and vaguely written prescriptions for physical therapy after a big back operation, which may find you in the hands of therapists who are not at all trained for your kind of problem, but they will go ahead anyway with the "no pain, no gain" mentality which was in vogue then, and they will try to create "more flexibility in the thoracic spine" of a patient with a soft, unhealed graft in her thoracic spine; this ends unhappily when they instead destroy the surgery completely, replete with fractured vertebrae, popped hooks, and a titanium rod migrating away from my spine causing a lump the size of an orange at my waist. This left me in pain, with an unhealed fusion, and totally screwed.
I have learned to be an advocate for my own body; it is perfectly fine to run like hell in the opposite direction if you have come across an asshole and he's got a 10 blade in his hand. In my case, the surgeon who performed what was the first two operations on my scoliosis (first an anterior discectomy and rib harvest, the second the full midline from neck to ass replete with instrumentation, application of bone graft from both that rib they took and the iliac crest from one of my hips, was a very well respected doctor with a big title at a big hospital who was one of the few doing this surgery on adults (it's most often done on children). However, as you will agree if you have encountered many surgeons in your life like I have that surgeons are very good technicians; they deal best with patients who are unconscious. The one who wake up yapping about pain and wanting to walk better is like a housefly you can't smash with your newspaper. So instead he writes a vague physical therapy prescription that merely reads, "Gait Training." That surgeon was a good technician (the jury's still out on that in my mind because with a huge spinal fusion from T-4 to L-4, I should have been fitted for a plastic body jacket that would have restricted the movement of my spine and therefore minimize the opportunity for damage), but he was an amazingly bad doctor. I was not braced after those two surgeries, and common sense would dictate that I should have been.
Later on, as I looked for a way out of the rubble left by crappy care, I was lucky to find two other surgeons who were not only brave enough to go in and try to sort out the mess the other had left; these two were both great surgeons and wonderful doctors. One surgeon dealt with my spine from T-4 down, and the other with my cervical spine. It is not impossible to find the combination of good technician and good doctor; keep looking and you will find a surgeon who is also a good doctor. However, let me reiterate: you are not a child (as we sometimes feel reduced to when we are in the presence of these learned men). Educate yourself about your condition (knowledge is power, after all), and don't ever, ever, ever let an asshole operate on you!
Now that my head is clear since I’ve been able to divest myself of all but 30 mgs of Oxycontin and eliminated bunches of other "trial and error" medications that I was taking all at the same time over the years of my sojourn into the rabbit hole, like the 1200 mgs of Neurontin, the Lyrica, and others that turned my brain to creamed corn but they didn’t work anyway; it’s been my experience that Oxycontin is useless in the treatment of neuropathetic, or radiating pain. Here’s the way these docs and their medications look to me: they write the prescription, I take the Oxycontin (to which I become addicted; it’s not difficult to recognize the deep yawning, sweats, and overall “icky” feeling you get when you’re ready for a dose), but I never say a word to the prescribing doctor because I live in fear that he will cut me off from the drug that is ruining me. I feared withdrawal more than the drug itself.
You need real, intense motivation to kick it. Maybe, like me, you’ll find your motivation in your family; maybe you have a husband or wife who is watching you have a car accident in slow motion and will do anything to stop you, or maybe you have a son like mine, a brilliant, handsome, angry, hilarious, hurt, insightful 19-year old who was saddled with an addled mother who taught him the joy of burping then went away only she didn’t die or leave the house, because she was living on painkillers fighting nerve pain after all the damage from operation after operation after operation.
A sick mother is a big pain in the ass; an invisible one is much worse.
And I must say that I have never, ever heard of Buprenorphine, which I read about in the diary, A Cure for Opiate Addiction in Afflicted Doctors, Lawyers and Bankers by 4CasandChlo, and I am a painkiller veteran. This medication was never suggested by any doctor treating me. Why not? What if it could have helped my pain and left my thinking alone? I believe the answer is really very simple, and carries with it a very ugly truth: drug companies are in business to make money. If the drug is inexpensive and off patent, which it probably is, there’s a battle going on somewhere over it. Remember: drug companies have been busted for bribing doctors to promote their products to patients. Fuck those sick people! Why sell ‘em pain relief for cheap when you can rake in the $1000 a month people like me have to pay if they have no health insurance just for the Oxycontin (that doesn’t include the rest of the meds I was on). I couldn’t live without that Oxycontin, because the drug was designed that way by the company that makes it. It puts all of us who suffer in the “I don’t know whether to shit or go blind” category. It is my opinion that drug companies and cigarette makers are birds of a feather; only they are vultures.
So we SUFFER; legitimate chronic pain patients are in trouble and need help, yet we endure the stigma and “sidelong glances” associated with these medications as docs and pharmacists try to peg you as an addict who goes from doc to hospital to another hospital to get some painkillers, any painkillers.
The drug companies have as much feeling for sick people in pain as they do for the bag of kitties they probably have just drowned. They don’t care. And they will tie up Buprenorphine for as long as it takes until the drug goes away altogether because it’s cheap and doctors have a hard time prescribing it, so it’s just too much trouble and then they can tout the benefits of another drug that may turn us into zombies that is much better for their bottom line.
I understand the cynicism and the worry about the “Then What?” aspects of pain management. If you don’t feel like you are able to wean yourself gradually out of this death grip, get help. There are qualified facilities out there who know more about your “Then What?” than I do. And they can help you without destroying you. Please remember that this is my story, it’s not anyone else’s but mine. Each person addicted to narcotics has their own, personal pain.
My point? I am 95 lbs. of scrawny, living testimony to the fact that if you are brave/strong/desperate enough to wean yourself off this poison, begin slowly - and with hope, you will be free.