Part 1 of 2
All right, my last update was October 08. This post assumes youve read that one (theres even foreshadowing). #109.
Anyway. So as Ive mentioned, there has been quite a lot of change since I wrote that. This is the *setup* to the post about all my cool new tech. In other words, theres more to come.
As I noted in my last update, I was not nearly as happy with the permanent unit as I was with the test. Everything just felt a little
off. I never got past that initial desire to keep to one program because the others were too difficult to use without inflicting further pain. Each of these programs seemed to require sitting at a very precise angle to get the damn thing to work at all, and if I moved even the tiniest fraction of a degree, it would almost invariably send a massive jolt through my entire body. It didnt take me long to figure out that something had to be wrong
but it took a hell of a long time to convince everyone else. Dr. Stacey, my pain doctor at that time (and the guy who put in the implant) refused to believe anything was wrong. We did x-ray after x-ray and everything LOOKS fine, so it must be working fine, right? Right
Heres something that has always bothered me, though. We had agreed on a very specific place to implant the leads via the test run. However, during surgery Dr. Stacey felt I was reacting to painful sensation more in another area. I was awake during the surgery but I mean
not really, ya know? Im not sure it counts if they give you so many drugs you cant remember how many fingers you have. It has always bothered me that he did this, despite the fact that there really wasnt much of anything that could be done once it was in there. And I think that alteration *may* be what caused all of my problems with the device.
That one program still helped, though it had its own problems. For instance, it didnt hit the whole area it was supposed to affect
and for another thing, its difficult to have one program running all the time. Its basically impossible, at least in my particular case, to restrict the sensation to the painful area; it will often run down my legs and make it very difficult to walk if I have it set too high. Not to mention, the muscles that are affected get tired of it, so Id have to turn it off for a couple days a week (I would have preferred to use it every day, practically all the time, as I do now).
This was all extremely hard for my wife and I to take. We gradually became more and more disappointed with the initial promise of the device. She agreed it was probably malfunctioning but it was a hell of a lot harder to convince that pain doc or the folks at Medtronic, each assuming that I either didnt have the right programs yet, or I wasnt trying hard enough to make them work. This, despite my jumping three feet up and yelping any time the experts were setting up a new program. They out-and-out *refused* to believe that anything could be wrong
especially Dr. Stacey. They took several x-rays, but were unable to see anything wrong. Eventually I gave up.
At this point I started abusing my fentanyl patches not just using more at once than I should, but actually extracting the gel to smoke. In my defense, at this point we really felt like wed tried everything; even my wife didnt object too strongly to this behavior. I swore profusely that I knew what I was doing, and frankly smoking those little globs of fentanyl cleared my pain up better than ever, before or since. I cant even express how awesome it feels to turn at the waist without pain after years of not being able to do so. I quickly became addicted to the process, not so much for the high as for the pain relief. There is actual terminology for this among pain doctors, though I cant remember what it is.
You can probably see where this is going.
On a particularly bad night in November, I squeezed a little more gel out of a pack than I was used to, disregarding the fact that even the tiniest drop of fentanyl contains a massive amount of opiate; it is 80 times stronger than morphine. I knew, looking at it, that it was more than I usually did, but I didnt care. I wanted to be done with that particular attack.
Fifteen minutes later, I woke up on the floor of my living room, surrounded by the large silhouettes of six large men, who turned out to be EMTs. I could barely see, and my arm was drenched with blood. I was vaguely aware of my daughter screaming, somewhere. I had no idea what happened, and frankly the story is so horrible that I am reluctant to re-tell it. My daughter, Mia (at the time, a year and a half old) had been in the tub, and had wandered out in the living room ahead of me. My wife heard her saying my name, louder and louder, as she cleaned up the bath mess. She thought I was playing a game with her, but as the urgency in her voice grew, she knew something was wrong. She found me slumped over my chair, my little fentanyl bong still in my lap, blue from head to toe.
Dont play with fentayl kids. It WILL kill you. The guy who taught me how to do it died mere weeks after my own overdose. Unfortunately for him, he lived alone.
I insisted I was fine (theres a shot they can give you that counteracts all opiates), but THEY insisted I go to the ER, and I didnt appear to have any say in the matter. They wheeled me outside, my wife clinging to my still-naked daughter, both in tears. Our driveway was filled with flashing lights; the fire department had arrived first. I tried to keep a brave face on for my family as they wheeled me away, but completely collapsed in the ambulance. I could not believe what I had put my family through. I will carry the memory of that night for the rest of my life. I take complete responsibility.
The next day, I called my pain docs office to let them know what had happened. I knew they would find out eventually, and I felt it best that I come clean before they heard it elsewhere. They insisted I come in immediately to discuss it. The situation was pretty grim: even though they nearly took my life, I still needed some sort of painkiller. Its not as though my pain had gone away overnight! Dr. Stacey disagreed; recall that I never convinced him that my stimulator was malfunctioning. He reminded me that we had implanted the stim with the intent of getting off narcotic painkillers in the first place, so we might as well stop their use immediately. In an instant, I went from .75/hr fentanyl patches and 180 short-acting percocets per month to nothing whatsoever. Suffice to say, the withdrawal was unpleasant.
I believe that Dr. Staceys decision here was based entirely on protecting his practice. In many cases, pain patients who abuse drugs (80% of us do to some degree) can be taught to use them properly; switching to a different long-acting painkiller and allowing my wife to manage them or even requiring that I switch to a weekly or daily prescription are great alternatives many pain doctors use frequently. Despite the fact that I did not fit the profile of a true addict (something I had researched extensively before the appointment), I was completely stripped of the only painkilling tool that was truly effective. I did not believe Dr. Staceys reasons were just, and the fact that he still insisted that my stim was working fine and was therefore a suitable replacement for such a massive quantity of powerful painkillers was infuriating. Our relationship began to fracture. Something had to change, and fast.
I never really smoked pot as a kid twice, and on one of those occasions I didnt even inhale properly. While Oregon has a great medical marijuana program, there are no dispensaries, which can create problems for those who go into the program in a state of complete ignorance, as I did. Lucky for me that a friend of a friend knew a grower, someone who would be willing to grow for me if I could get him a card to keep it legal. In the meantime, I had a connection who I could buy from while I waited
and I did.
I knew so little about marijuana that my friend had to teach me how to pack a bowl and how to use a glass pipe. I know this, though: it rocks for pain. It is just as powerful as fentanyl, just a different sort of sensation. Its superiority lies in the fact that
you cant die from an overdose! I could take as much painkiller as I needed to whenever I wanted to. It is the perfect drug for chronic pain patients. It was, potentially, a dream come true.
I educated myself as much as I could, reading everything I could find about it, and I cannot believe how much blatantly false information about pot the government is putting out there. I went from being mostly apathetic towards marijuana to a huge supporter of not just medical marijuana, but decriminalization as well. It isnt nearly as bad as alcohol (I can attest to this, as I spent much of the first year of pain guzzling as much liquor as I could afford), and it presents virtually no risk to the health of the occasional smoker. It is about time the federal government approved medical marijuana across the board, at the very least; not everyone is quite as lucky as I am.
I started using pot as a painkiller the day after Dr. Stacey completely revoked my opiate license. Initially, I used it because I knew I was in for one hell of a withdrawal, but as the week went on it became clear that I now had a safer, equally potent painkiller. I started the long process of getting a card, and contacted Mothers Against Misuse & Abuse (MAMA), a pro-medical marijuana program complete with doctors willing to sign off on cards. It was months before I actually got an appointment; in the meantime I continued to buy. Once all of my medical records had been gathered, MAMA granted me an appointment
again, months away. I dont think anything teaches you patience quite as well as chronic pain does; your condition is not terminal. Sometimes, it feels like being on the bottom of a massive totem pole.
It is a poorly kept secret that medical marijuana cards are usually easy to acquire, even if you dont have a legitimate condition. So, you can imagine how easy it was in my case, given the six-inch thick file I came in with. He took one look at that thing, one look at my best pain face (the long wait to see him hadnt exactly been comfortable), and immediately signed off on my card. We exchanged few words.
At this time, Dr. Stacey had become my primary care doctor, despite the fact that he was a specialist. I had recently parted ways with my normal doctor, and I was reluctant to pursue another, as it can take weeks to convince him/her that my condition is authentic, which is usually followed by brief, ego-driven passion: These other doctors may not have been able to fix it, but I can! Trust me, Im the one you were looking for. This is followed by a period of odd resentment
and then we can finally start building a good relationship. It takes a big chunk of my daily energy budget to do something like that, so I tend to put them off for as long as possible.
As he was now handling all of my prescriptions, I thought Dr. Stacey should know that I was a medical marijuana user. He became visibly upset; he still felt the stim should be sufficient for pain, and he didnt like how cannabis interacts with people who have painful conditions like mine. He warned me that I would completely lose all motivation to do anything, that I would not be able to get better while I was using pot (this, despite having gone through about four physical therapists who had let me go, typically after the first session, fearing they were doing more harm than good). No, he would much rather I continue to spend days at a time in a horizontal position while he continued not offering any solutions beyond willing the stimulator to start working properly.
I was furious. Here was the man who had not only ramped me up from vicodin to fentanyl in the space of less than a year, something I now know is incredibly dangerous and stupid (more on that in my next post). Here was the man who had installed my stimulator differently than what I had originally agreed to, while I was under heavy anesthesia , unable to stop him. Here was the man who still believed my stim was working perfectly fine, despite the fact that I was now practically begging for additional surgery to reposition the leads. He had taken away my primary pain relief, refused to fix my only other major pain relief, and now he was standing in front of me, bitching about my decision to turn to alternative medicine.
I wanted to punch him in the face
but I didnt. I stood up, walked out, and never came back. I needed to put together a new team of doctors who would support my choices and maybe, hopefully, LISTEN to me, something Dr. Stacey did less and less as time went on. But I needed them fast; with Dr. Stacey out of the picture I had no one to turn to. More than anything, I needed a primary care doctor. I needed a damn good one, too.
NEXT: New doctors, new tech.