Because there has been so little written from the pain patient’s perspective on oral opioids (opioids), I thought I’d write something from my personal experience.
Before my 2010 introduction to pain killers, I’d been a lifelong athlete and competed in sports like mountain and road bike racing and an occasional long-distance run. I’d started early in sports like soccer and alpine skiing and had my first experience in skiing at the age of three. I got into the sport of cycling around twelve, long before riding a bike for speed and distance ever became a popular pass-time in the US. I also played the usual American team sports, including long stints on the basketball courts of my youth. We’d play for hours, year-round on the snowiest of winter days and the hottest, most humid summers north-central New York could throw at us. Our “home court” was a monolithic concrete slab that had been built atop the community water supply. I guess the developer designed our subdivision killing two birds with one stone wherever he could. The court was full-size, give or take, and austere, consisting of an 18-inch thick slab with a basketball hoop on each end. The slab’s abrupt edges served as “out of bounds” and the court had none of the usual painted demarcations, so without any lines, the rules were simple and the games were free-flowing like they were being played atop some kind of vast concrete ocean. We would run all afternoon listening to the latest rock tunes churning out of someone’s boom box. All of the area kids came to play on this home court of ours. We played a good game, and members of our high school team would come up to join in the festivities. This was the seventies and a great time to be young and alive.
Not unlike kids from everywhere, the same group of us would engage in baseball and football, rounding things out with swimming and diving, or even a bit of golf. If it was considered by us a viable sport (not like cards, for instance), we’d eventually get around to playing it. Some of us were good enough to play at the high school and college level. My best sport was soccer, so I played competitively in high school. I was a pretty gifted player, but it ended with playing a bit of club ball in college. I had a real jackass of a high school coach who would actually poke fun at my wheezing, right along with a few of his pet players. As was an artifact of the centuries-old myth that whatever passed for asthma back then was psychosomatic in derivation, he seemed to think I’d made it up as some sort of attention seeking ruse. He was an adult in his 40’s and should have known better, so I used it as fuel to elevate my game and would look over at him with a rebellious grin every time I made a good play or scored a goal.
I began feeling a fair amount of back pain and, by the ripe old age of twelve, I’d had my first visit with an orthopedist. The X-rays showed that I had signs of significant back trouble to come and that I had too much of an inward curve to my lumbar spine. His instructions amounted to ebbing the time spent playing concussive sports and to begin a daily regimen of situps to strengthen my core and make life easier on my spine. I added pushups and curls and would start each morning with a series of 200 situps, pushups, and curls regardless of what other activity I might be doing that day. This I would continue throughout the many years thereafter. After hearing the doctor, my mother was obviously concerned and decided to disallow me from playing organized football. But, to her way of thinking soccer and skiing were still fair game…as was, of all things. basketball. I suppose in any mother’s mind in those times, “concussive” meant “contact”. She knew that out of all of my sports, football would have been the most concussive. As for my dad, when told of our day at the doctor’s office, his reply would have been something like “Huh, what? Yeah, sounds good.” My dad was a young project engineer who had gotten his PE license and MPA (Master’s in Public Administration) and was working for the New York State DOT. He always had a lot on his mind but made time for us in joining my friends and I playing sports, namely basketball on our home concrete driveway (yes, more about concrete…there is no more unforgiving surface upon which to run, jump, twist, and turn…not what the doctor ordered for bad backs or knees). He also took me hunting and fishing and opened the natural world to me. He had been a strong skier himself before settling down to raise a family and would take me to several nearby ski areas in the Adirondacks. These excursions gave me the chance to see my grandparents and he his parents, aunts, uncles and cousins who all became my own same family relations as my dad had been an only child. My mother was from the next little town south, in the bosom the High Peaks region of the Adirondacks. She, too, went off to college and would ultimately land in banking, so my brother, sister and I had two working parents which was still a relatively new concept at the time. I was the oldest and tried to help my mother by being in charge of the others until she got home from work. As a family, we lived very busy lives. To this day, I don’t know how my mom managed her end of the bargain. She had an incredible work ethic and a strong set of Christian values, so I probably got my inner-drive from her.
Concurrent to the team sports I was into, I continued to develop a love affair with individual sports like skiing and cycling, only, in order to be satisfied with myself, I would begin the lifelong quest of being the best at both. This would mean riding until I had muscle cramps so bad that my dad would have to massage my legs and skiing so hard that I had difficulty walking the next morning. By now, I might have been all of fifteen or sixteen but these individual sports, and there would be many others as I grew older, take years to develop oneself into an accomplished, competitive level athlete and that choice needs to come at an early age. I didn’t have anyone pushing me, only myself, so, despite the limitations of having childhood asthma and a less than desirable spine, I elected to continue to pursue my dreams.
Before diving headlong into sports, I’d been diagnosed with severe asthma somewhere around the age of six. Though it was bad enough to put me in the hospital many times throughout my childhood, I wasn’t about to let it slow me down. Being bullied (it was seldom referred to as such back then as, boys and girls alike were expected to fight their own battles) by the older kids and made fun of by my own friends because of my constant wheezing, I’d only let that fuel me to play harder. While playing, my breathing would become so labored that I’d incur tremendous headaches and take on a bluey/ashen look. I’d be gasping before I’d quit for the day. This became my “normal” and I don’t remember ever complaining about it. But I finally had enough of being the center of mean-spirited tomfoolery and one day turned on my primary nemesis and beat the living daylights out of him. He was so embarrassed by his two black eyes and likely broken nose that he missed classes for a week. I was now a full-fledged scrapper and from then on the jokes subsided.
Though the asthma was challenging I don’t remember ever letting it “define me” and I played soccer and made my high school team as a freshman and ultimately lettered as a varsity team player, starting as a sophomore. But here’s the rub and where, from a scientific standpoint, things got interesting. During my young, rapid bone-growth (referred to as “green stick” by doctors) years I was on corticosteroids such as prednisone and cortisone. Though these drugs helped keep my asthmatic lungs clear I still made numerous trips to the hospital and an awaiting oxygen tent through elementary and early middle school. While a necessary evil, the years of steroid use turned out to be the root cause of early-onset arthritis in my lumbar spine. The sports had been compounding the problem. As mentioned earlier, I also had what was considered too much of a lumbar curve which put loads of undue pressure on my lower lumbar discs. So, you might say that between the two major aspects of my young life, asthma and sports, my back was already done for and everything I would do thereafter left me in increasing pain throughout my thirties and forties and my first major back surgery at fifty. By then, the pain began to corrode every aspect of my life, including my work as a senior project manager in the natural gas industry. My last job, where I’d risen to the level of regional director, had me sitting for fourteen hours a day, something my back was no longer prepared to do. Even driving to and from work had become so painful that we found a house just two miles from my office to ease the commute. Home was no longer a place out in the country like I’d always strived to have, but a place in suburban Pittsburgh. Having moved from fifty acres in Colorado to Pennsylvania when the economy bottomed out in the late 2000’s was bad enough. It was now 2010 and, after a life pursuing a career and mountain sports in Colorado, my life had bottomed-out and I found myself in insurmountable pain and missing my mountain existence like a wolf that had been captured and placed in a zoo. I was in so much pain that I felt like I couldn’t put off getting medical help any longer. I began the pain chapter in my life with a prescription for hydrocodone and saw a surgeon at the University of Pittsburgh for a laminectomy (a highly invasive form of back surgery).
I was no longer able to sit or stand in one place for more than ten minutes, so, effectively my career was over. My wife, who had worked as a systems engineering instructor at NASA in Clear Lake, Texas (the Johnson Space Center) for fourteen years before her moves to Colorado and Pennsylvania, got a good job working for BP at its North American headquarters near Houston. She was from just outside San Antonio and had family and friends in Texas, so we made the move from Pennsylvania to Cypress, Texas, roughly forty-five minutes from Houston. I was a complete mess after my Pennsylvania laminectomy, and continued on a downhill path trying hard to get my old body back while running around attempting to, yet again, establish myself with a decent pain specialist.
What started in PA began to haunt me. I was now fifty-one years old and had spent my entire life living clean and never involving myself with drugs or serious alcohol, yet I was being treated like a drug addict and profiled for “drug seeking behavior” at the doctor’s office, the pharmacy, and worse, the times I was dumb enough to go to the emergency room with the chief complaint of back pain. I’d arrive in huge pain only to be turned away, leaving in even more pain from the stress of the experience. I got a similar reaction virtually everywhere I sought help. I got “fired” from a pain clinician’s office on my first visit because I didn’t like the way I was being treated and told the attendant doctor as much. I learned that, being a “Commonwealth” state and one of the first states in the Union coupled with having an older-aged population meant that the state was a legislative machine and with the new opioid epidemic, it was among the first states to crack down on anything that had to do with this family of drugs. I’d been so busy working and just living with my pain in Colorado, I had no idea that certain places in the country were having serious problems with opioid over-prescribing and the resultant rampant illicit abuse of these medications. It seems that I’d unwittingly walked into a war that, to my way of thinking, had absolutely nothing to do with me. I didn’t use these drugs to get some kind of a high, I used them because my doctor had made them available to me to help curb the effects of mind numbing pain. For over a hundred and fifty years and the Civil War, that’s what these morphine derivatives were there for. But, after a few months of this kind of ugliness and being treated like I was part of the problem, I began to realize that, like it or not, I was caught-up in this war with no one but my wife as an ally.
While I was doing my level best to adjust to Texas and recover from my laminectomy, it began to sink in that that surgery in which the surgeon simply scraped-out my lumbar spinal canal, ridding it from several spinal stenoses and attending to a completely dessicated bulging disc, had not helped and, if anything, had exacerbated the pain. I had one more bulging disc above the most major problem area that received no attention at all. I realized the surgery had been a failure and began the diagnosis phase all over again. My back needed a lot more than a simple laminectomy but, hindsight being what it is, that surgeon didn’t sell spinal fusions because performing laminectomies was far simpler and he specialized in them, ostensibly banging out one after another. Having by now viewed plenty of images of my lumbar spine, it was clear, even to me as a lay-person, that my problems could never be solved by a standard laminectomy. The worst part at the time was in looking at how relatively primitive a laminectomy is (they can be downright medieval) and not having any pain medication after the one-week, post-surgery, prescription ran out. During our entire move from Pennsylvania to Texas and then for two months of trying to get an appointment with a pain clinician, I had nothing to curb the pain. My back had effectively been “roto-rootered” and the resultant pain from the surgery was enormous. I finally got in to see a practitioner and was given a prescription for Oxycodone and Amrix, a muscle relaxant. With these two meds helping to take the sting out of my situation, I was able to take the time necessary to locate the best spine surgeon I could find and try to put the laminectomy behind me. I had to think long and hard about the proposed “360 degree, tri-level, circumferential fusion”, which would take a full year from which to recover. I entrusted this doctor with my future well being and elected to have the surgery. I’d just turned 51 and was told that, aside from doing the surgery to mitigate the pain, I needed this surgery if I still wanted to be walking in a year’s time. This was the second time in a year that I’d heard this forecast and the words carried significant weight. I got it. My back was in serious need of repair so here I was looking at my second surgery in a year.
When it comes to severe chronic pain due to degenerative issues with the spine, most patients at some point in their pain journey are forced to undergo surgery to address the mechanical problems which are at the root of the problem. My back was so deteriorated that I needed a stainless steel cage to be built around three vertebrae and have some long-lost space built back into the where the discs once were. The procedure is called a fusion because after a year, or so, of having a stainless steel cage installed to add some much needed structure to the afflicted area, the void space which is created fills in with scar tissue and becomes calcified, making it a singular, well-constructed boney mass. A fusion. I was a bit nervous about it, but I didn’t have another viable option. This surgery would either give me some years back or could potentially be another disaster. That would depend on two things: just how talented this surgeon actually was and how well I managed my recovery process.
After the fusion surgery, I was directed to a new pain clinician to see that I received the kind of pain medication that would be vital during my recovery. At this point and, for a variety of reasons having mostly to do with constant pee-testing (I truly felt it was dehumanizing and demeaning), and the never-ending profiling (interrogation) by pain doctors I’d already been seeing for months, I was turning into a certified misanthrope. I was on my third or fourth pain doctor (not including all the appointments it took to find those four) and began to see the larger picture, with pain and its methods of treatment as big business. Driven by the behemoth-like insurance companies, an entire industry had been built around it. At this point, “pill mills” had already been under attack for several years and doctors were reacting in the opposite direction by putting on the brakes and making it very difficult to obtain medications that just two years before were fairly easy to acquire. Ne’r-do-wells were breaking into pharmacies and there were even a few shootings that made the evening news. The entire landscape surrounding these drugs had changed completely in a matter of just a couple of years. These doctors had transcended from their roles as “pill-pushers” with a big change in prioritizing the health of their practices over the health of their patients. Doctors were in widespread panic over prescribing what might be seen as too much and too often, so they began to prescribe very little. The default setting had seemingly become “treat everyone the same and assume that every one of these bedraggled people has the capacity to put your clinic in danger of extinction” by those who were put in place to monitor, and audit, this type of clinic. To me, the constant barrage of profiling had gotten more than old and I was always on-guard, afraid to say the wrong thing and somehow jeopardize my own situation. My wife and I even began to evaluate what I should wear to these appointments. Look too tan or athletic and they would never believe I was in the sort of pain I was describing. Too casual and overwrought in order to mesh with how I was feeling, no, then I might appear to be the enemy potentially using opioids in an attempt to get some sort of high, or worse, selling them on the street. An addict. I couldn’t win for losing. Even the way I typically addressed people in conversation, intelligently and professionally, might come across as threatening to a doctor who had already grown a chip (more like a block) on their shoulder. I became overly self-aware in attempting to dumb myself down and was piling the stress on an already stress-filled situation. But I truly felt that these behaviors of mine were a byproduct of trying to get my very serious needs met and attempting to do so by by being forced to “run the gauntlet”. I was at a loss and neither my very smart wife, nor I, knew what to do. The idea was to take myself down a few notches so these doctors might feel a bit more comfortable being dominant and superior. This was virtually impossible for me as I am a terrible actor who just happens to be articulate and, worse, I’m six-four and weigh two-hundred pounds. The point is that I was compelled to try anything I could as a means of acquiring something I needed as much as there air I breathed. But underneath these meanderings, I felt like I was selling my soul. Never for a minute did I believe I was “in a place of healing” or that this person, my pain clinician, couldn’t put me in a world of hurt by releasing me for any reason at all, no matter how contrived. How I was feeling inside began to manifest itself in ways that I could no longer control by calming myself. My blood pressure, which is typically low, somewhere around 115/75, would skyrocket to over 150 when checked in a pain doctor’s office. My pulse would go from around 55 to over 150 BPM. Once, I was even sent to the hospital after presenting vital signs indicating that I had gone tachycardic. Of course , by the time I rolled into the emergency room, my BP and pulse were back to normal and the EKG they gave me before I could leave revealed absolutely no traces of a problematic heart. These physical signs were a clear indication that I feared these people for what they could do to me and the excruciating power they held over my life. I had had so many bad experiences that when I was attempting to convey my situation in pain clinician’s office, my body would go into “fight or flight” mode. I had one clinician tell me that I’d failed a UI (urine analysis) because my pee was “too clear” and that I must have added tap water to it while in the bathroom peeing into a cup. Being into endurance sports, I had always lived in a way in which I maintained very good hydration. I was constantly drinking water such that my mantra was geared toward having urine which was “gin clear”. Any serious athlete can speak to this, yet I found myself extremely offended and upset with this doctor over making such a foolish, downright stupid accusation. Here’s the worst part. The lab assessment (test results) stated that I’d passed but that my urine was unusually clear. The doctor took it upon himself to extrapolate that into what could only be the worst light. I said “too clear…compared to what!”. “You obviously don’t know the first thing about health and fitness…my system is clean and should show no indications of over use of these medications or using them in a way that is not prescribed!”, along with a few other more choice words. But, the truth was that there was little I could do, particularly when I needed to turn that negative energy around and quickly find a new doctor. I left his office being pleased with myself for not completely unloading on him beause he could easily make some phone calls to some of his fellow clinicians in the area, making my chance of finding another clinician all the more bleak. But never in my life had I allowed anyone to intellectually assault me to such a degree that I didn’t make them second-guess themselves for attempting to do so. The flavor of pain that I was in in an uncontrolled, no medication scenario was untenable…even for someone accustomed to severe pain for long periods of time. I was crying when I got home and told my wife what had happened. We both went to work calling every pain clinic in the area (this was Houston, not Denver, so it seemed that everyone was in pain) and, after a week, or so, we were able to schedule an appointment. By the time I got in to see that particular doctor, I’d been out of medication for almost a month. I was forever being forced to come off of these drugs cold turkey. Each time was nothing short of torture and, that it was completely unnecessary made me hate the system all the more. It was ever-so-clearly inhumane. I only wished that the offending doctor could have seen me writhing in pain like a wounded animal. But, in retrospect, it probably would have pleased someone of of his obvious sociopathic tendencies.
What most people don’t realize is that, when it comes to mechanical pain, pain which is not due to some nefarious underlying illness like cancer, there are very few empathetic pain doctors out there, particularly during the period of time in question. Though things have settled down considerably, it was strictly business through the worst years of the opioid crisis. I remember wondering, why would anyone during the twenty year period from the mid-90’s to just a few years ago, want to be a doctor specializing in pain and endure how the general public saw them? They were viewed as a major part of the problem in “over-prescribing” pain drugs in the years preceding the “opioid epidemic”. Even their peers in other fields of medicine had turned a cold shoulder. From my vantage point, it seemed obvious, so I dug into it a bit. Many medical students chose pain management as their specialty because the path to become a medical doctor in this discipline isn’t academically all that challenging, but the average annual income for doctors practicing this brand of medicine is relatively high. Across the board within the pain industry, the standard of care is lower than in any other other field of medicine. It got so bad that with doctors and their staff, from PA’s and nurses to administrative employees and people running the check-in desk, there was a air of condescension aimed at those of us who were suffering from pain as if there were some kind of relationship between pain an intellect. I took serious exception to this kind of thinking and regularly taunted these people. It was my small way of getting back at them and I would be particularly miffed when I watched how they treated the elderly and people who were otherwise poorly prepared to defend themselves. People who were in so much pain that they couldn’t think straight. I fell into this category myself and am fortunate to have had my highly intelligent “rocket scientist” wife who is as patient as the wind come along to help me deal with these people so that I wouldn’t get “into trouble”. The downside was that this led to some conflict between us because I could never be allowed to be myself. Holding-in such repressed emotions can be extremely unhealthy and I felt like an anxiety-fueled missile about to be launched at any given moment. I’ve never handled rude behavior on the part of another person without letting them know what I thought of them. I reacted to such people in a way that by the time I walked away, they knew they’d just been bested. It is the combination of my own values and my competitive nature that would have me tactfully pull the rug out from under such people, particularly if there was blatant stupidity that I’d been forced to listen to while doing my best to stand quietly in line. I was in so much pain that standing in one place for more than a few minutes would put me in very real distress and I could feel the blood run out of my face and the beads of sweat accumulating on my forehead. I’d honestly rather have been water-boarded. But the part that I truly came to hate was when the doctor and his “associate” would walk into the patient holding room. Sometimes that associate might be a nurse or PA, but often these people looked suspiciously out of place in their lab frocks like they were moonlighting as doctor’s “assistants” during the day and reengaging in the evening with their regular jobs as bouncers from the closest drinking establishment. They were clearly there to protect these doctors from the elements of evil walking in from the streets. I was not only not part of that fraction of people seeking pain medications, but I viewed them as the enemy for making my life a living hell. Every bone in my body wanted to “mix it up with these “assistants” while the doctor spoke to me in the all too familiar “smartest person in the room” tone. I just couldn’t seem to sell myself out completely and this would draw the ire of my wife who was all womanliness and femininity, never understanding that part of me. I couldn’t win for losing and by the end of each appointment I felt like my person had been violated while having to endure a “talking-to” from my wife on the way home. It’s not that she was wrong, she was only trying to protect me from myself, but it was that I wasn’t wrong in wanting to defend myself from these people. I would feel like I had to throw-up. It was all I could do to fake my way through yet another life or death day, for without being handed my prescription, I would pay for my impatience and inability to be walked-on a thousand-fold. It felt a lot like watching some old movie where the story’s protagonist would take a hundred lashings and still not give up the goods or inform on his compatriots. No matter the form of torture, they simply weren’t going to submit. The one thing I tried desperately to hold onto was my spirit.
Just when I thought I could take no more of what Houston had to offer, my wife and I were able to move from the area (I am a country person from Colorado, not big on city dwelling, and she grew up on a farm) and landed on some property with a wonderful rural home in Central Texas. She works from home for a San Antonio engineering company and I am now retired. The downside to the move was that I once again had to find a pain clinician, which, fortunately I did without more than a couple of months passing. But, for the fourth time I came off opioids cold turkey until I could find that doctor and prepare for the potential nightmare in finding the experience unpalatable. For the first time, I got lucky and was able to string three years together with a compassionate doctor until that chain of clinics was acquired by another company. During those years, I was able to run, ride, go to the gym, work on my property, and lead a modicum of a happy, peaceful existence. I was getting my pain needs met. It seemed that I had left the war behind me but is was now 2018 and opioids were being taken off the table altogether while I was again without a doctor. That is, until I tracked this same doctor down some two months later. Based on ethical grounds (he didn’t like that the fact that things were quickly changing within that chain of clinics and he was now being told what he could and could not do with his long string of patients), he simply came up one day as missing, leaving the clinic with the burden of telling all of his patients that he had resigned from his post. He was a highly intelligent doctor who had spent his residency as a pain specialist treating cancer patients at well-known cancer hospitals in Philadelphia and Manhattan, and was far more credentialed than any of the eight board members who were the owners of that Austin chain. He was now making the long commute to a hospital-based clinic nearly 60 miles to the north. We reconnected and for two years I made the 120 mile round-trip just to see him. In the five years I’d known him, we’d forged a pretty strong doctor/patient relationship and he took me on until that clinic declared Chapter 11. He believed that my pain was on the order of some of his cancer patients and I finally had a doctor who agreed that severe mechanical pain could be every bit as pernicious as pain derived from having cancer. I believed that as long as I stuck with him things would be OK and I could finally concentrate on the other important aspects of my life. But he lost his job and I lost my doctor. I was completely heartbroken. He wrote me a two-month supply of meds and we shook hands and wished one another luck. Two months later and still without a doctor, I would once again be forced to come off opioid medications cold turkey.
The entire time we lived in Cypress, after my 2012 major fusion surgery, I’d made a long, painful, but successful recovery and was riding, running, going to the gym, and even won a big cycling event with over 2,000 entrants. I was back into “Colorado shape”. It was an incredible battle to dig out of the bottomless pit I was in for sooo long, but I’d made it. We’d made the move to Central Texas in 2015 and I continued working out at the same pace. But, my back was once again catching up with me and, by 2019, I needed another fusion, this time to join the next vertebra up from the original fusion in 2012. The way I looked at it, even with the trials and tribulations over the pain management side of my life, that Houston surgeon had given me seven mechanically good years where I could, with a lot of hard and painful work (and a breakfast and dinner of pain medications), continue with my previous athletic pursuits and have a modicum of happiness in my pain-riddled life. Though the 2019 surgery was a success from a mechanical perspective, my pain continued to get worse and I finally succumbed to all but giving up on cycling and running, the only two sports I had left after leaving Colorado and skiing, motocross, snowmobiling, archery elk hunting, mountain biking (I was an expert/elite class racer for eighteen years), fly fishing, and an entire way of life behind. It came down on me like a ton of bricks, as I would spend the next four years in excruciating pain and had some general health scares leaving me close to death in the hospital on three occasions. Thereafter, it felt very much like the end of my story was near. Oral opioids were no longer an option as government pressures clamped down on clinics everywhere, so I located a pain management doctor who specialized in alternatives like pain pumps (I’ve had one sitting inside me for five years now) and electronic stimulators (I had one of those installed in 2021, with zero success) and, ultimately, another fusion surgery, this time it was my SI joint, tow years ago come January. I’d spent half of 2021 and half of 2022 flat on my back, bed-bound while the doctors (an orthopedic surgeon, a neurosurgeon, and my pain management specialist) tried to figure out where all the “new” pain was coming from. At least I believed that my pain clinician was “one of the good guys” and I’m comfortable with his bedside manner and that he has my best interests at heart. I just don’t think he can imagine the kind of pain I’m in. To a certain extent, his hands are tied in terms of what he can do but I’ve grown to both like and trust him in that he is doing the best that he can while staying within standard industry guidelines. But my back is not standard and there is simply no way for me to convey precisely how bad my pain really is. There is still plenty of “freeboard” on the dosing that he can work with and still fly under the radar with me as his patient. I’ve done a lot of reading and spoken with several doctors on the subject and have found the relationship between steroid use as a young child with developing (doctors refer to them as “green-stick’) bones and early-onset spine problems to be true. I had this as a starting point to my pain and all the surgeries and procedures which followed forty years later, but no explanation as to why I seemingly and, so suddenly, was in a lot more pain than I was just a year before. Nothing of significance had changed except that I’d had one last trip to the Big Bend Region of West Texas to do some fairly strenuous hiking. It was on the way home from that trip in July of 2021 that I began to feel a new level of pain and I limped home only to spend much of the next year in bed while having all sorts of pain procedures done and every kind of imaging that might give my doctors an inkling as to what I’d done to myself during that last road trip. I’ve not been able to do anything even remotely like it since. The only thing that came up as a possibility was that my sacroiliac joint at the southernmost part of my spine was in very poor condition and that it is not unusual for that pain to report to one’s lumbar spine in the context of “referred pain, but I had that surgery performed in January of 2023 and, if anything, it increased my pain another notch. Nothing made any sense and it seems that I will be in untenable pain for the rest of my life. Currently, I’m lucky if I can walk half a mile and I sense that at the rate my back is deteriorating I may not be able to walk at all in a year’s time.
As you might imagine, after finally “beating asthma” and having it be a silent handicap until my mid-twenties, I was more than a little anxious to show the world what I could do. The doctor’s explanation was that I’d simply “outgrown it”. While I still needed to carry an albuterol inhaler every where I went (I now had what they refer to as “exercise-induced” asthma) and was likely using a lot more of it than what was prescribed, I came crashing out of the confines of being shackled by the disorder and began competing in my base sport of cycling and took in some trail running races in my home of Colorado…a long-time mecca for some of the best endurance and mountain athletes in the world. I immediately began to finish in the top five in my expert/elite category and age group. I did extremely well in the few long-distance trail running events I entered. As time went on, I’d find myself still at it almost twenty years later, maintaining a busy career all the while. Mountain bike racing was my specialty, though I was heavily involved in six other mountain sports. Interestingly, I was tested for various endurance exercise criteria at a renowned exercise physiology clinic in Boulder and found out quite a bit about myself as an athlete. For one thing, my VO2 Max was tested (a grueling procedure where the athlete gets to choose between being tested on a stationary bike or treadmill) wherein your ability to process oxygen at your highest levels of exertion is measured and compared against other high-level athletes from around the world. My score had me mixed-in with top cross country skiers, cyclists, and other endurance athletes at the time…”Olympic Caliber” it read. For me, this was the single most important test score I’d ever received in anything as it validated just who I was as an athlete. That I had a more than a full-time engineering career “on the side” was confirmation to me me that if I were a sponsored athlete getting all the right nutrients, the ideal training regimen, and plenty of rest, there was no end to where I could have gone had I not had asthma during some of my most formative and competitive years. I was already 31 years old when tested. When meeting with the center’s exercise physiologist a week later to review my results, when told of the severity of my asthma coupled with pursuing sports anyway, she quickly pointed out that there was a relationship between the size and function of my cardiovascular system and pushing through the asthma for so many years. It seems that my body had adapted to functioning at a high, but encumbered heartrate (because of the lack of oxygen present in my blood) and had trained itself to perform on relatively lesser amounts of available oxygen. Apparently, she had seen this with a few Olympic swimmers who had had childhood asthma, the famed Mark Spitz (winner of seven Olympic gold medals in the 1970’s) being the first to come to mind. In looking back, I remembered that the doctor who treated my asthma as a child had pointed me in the direction of swimming because the athlete is breathing slightly humidified and sterile air at the water’s surface and that swimming arenas tended to be devoid of the many allergens associated with outdoor sports. My mother had taken this information and enrolled me (I believe I was around nine or ten year’s old) in a local swim club that had competitive racing on the docket for its better swimmers. As I remember it, I competed in breast stroke and freestyle events for perhaps a season, but that’s as far as I would take it. The draw of doing all the sports that my friends were doing was just too great. I did, however, lifeguard my way through college and took to swimming laps for exercise during that period of time. I have also relied on swimming during my various post-surgery recoveries. Boy, how I wish that I’d stuck it out as a swimmer!
I had to do something to pay for this array of expensive interests, so I had three discrete careers: mining process development, forestry, and oil and gas where I was gainfully engaged in engineering and project management work. I finally made it to a level where I never intended to go as an executive manager for a large engineering company. This is where the gritty part of the story begins, as I was ultimately forced to leave my beloved adopted home state of Colorado and move to the Marcellus Shale natural gas play in Pennsylvania. I’d managed to spend the bulk of my engineering career being outdoors on the construction management aspect of my work roughly half-time, with the other half sitting behind a desk. I was never an “office engineer” until I took a regional director’s position in that new Pennsylvania endeavor. This new position turned out to be extremely high pressure (as most of my jobs were, but this was over-the-top) and I could be found working sixteen hour days either in the office, working at night from home, behind a desk, in a conference room, or on a plane to Houston to get beaten up by the company’s new CEO who knew nothing about midstream natural gas. I was hired as the company’s SME (subject matter expert). The company, while constructing many of the country’s interstate pipelines for sixty years had also acquired an offshore drilling engineering firm, but these were “downstream” activities – pipeline engineering, design, and construction. While related, midstream natural gas is about gathering and production while pipelining is about downstream transportation. I couldn’t stand the guy as he was expecting me to turn water into wine and bring forth regional revenues for my new office at a rate the industry simply couldn’t provide. For such a large company, the first red flag was that they hadn’t even conducted a market study for the Marcellus and that meant that there was no business plan (or map) as to how to go about the massive endeavor. They were shooting from the hip, something I’d never before seen in my career, and they were using me and my industry contacts as the barometer as to whether or not they were on track relative to sales forecasts never developed.
With all this sitting and not nearly the amount of exercise my body was accustomed to, my lower back got soft and began to hurt at a level previously unknown to me. I’d already come to know severe back pain but, until now, it hadn’t been a full-time job and I’d somehow managed it for thirty or more years. Until I hit PA, I’d only had a few cortisone injections but hadn’t yet been forced to turn to heavy duty pain medications for help. I figured that I’d better get on top of this with my employer, but that CEO didn’t like me any more than I liked him and I was still new to the company. I was promised a temporary replacement until I could have my first surgery, which I didn’t take lightly, but it turned out to be necessary if I wanted to continue being able to walk and even consider sitting behind a desk one minute longer. I found a reputable surgeon who advised that I undergo a laminectomy to take care of the narrowing of my spinal canal and eliminate several spinal stenoses and manage a bulging disc. After enduring three months of mind-bending pain, I still hadn’t seen my temporary replacement and was being pushed even harder to chase and entertain prospective clients and get that new office humming. I had one final conversation with the CEO and was forced to resign if I was to ever get that surgery. It was a terribly stress-filled decision, but one I had to make. It remains as the one thing that happened to me in the workplace from which I would never recover.
It took six months to come back from the laminectomy surgery while being in just as much pain as I was before I went “under the knife”. Ten months out and I began my quest to find the right surgeon for my now dangerously deteriorating back. This time, I “interviewed” three surgeons and chose one to perform a very invasive surgery in which he would build a stainless steel cage to fuse my lower three lumbar discs together. Again, I was told that, mechanically, my back needed this fusion or I’d soon end up in a wheelchair. The surgery was solid from a mechanical point of view and would keep me upright for the foreseeable future. By now, I was being prescribed some pretty substantial dosages of oral opioids. Without them, I have no doubt that my quality of life would have sunk lower than I could bear. I spent six hard months recovering from that surgery and a complication of my first surgery-related bout with pulmonary embolisms which brought me to death’s doorstep for the first of what would be three times over the course of the next ten years. But, between the mechanical benefits of the surgery, and the OxyContin script for pain, I was able to take control of my life and resume my cycling and running activities. I began hitting the gym twelve hours a week to bombproof my body in the hopes of getting so strong I’d never need another surgery and could begin competing again.
I’ve always been a pragmatist with a dollop of optimism on the side. It is the only way I know how to be. I am a perfectionist and take everything I do quite seriously. I’m not sure why I thought that I could have that kind of a comeback after having such an intensive and painful surgery in 2012, but I put my mind to it and provided myself with a goal which was to be in good enough shape to return to Colorado eight months after that surgery and take my wonderful dog, Kelpy, on one last great adventure to hunt elk for the September archery season. I put together a training program for myself and was ready to make the long drive by the end of August. The trip would find us camped up high (around 9,800 feet) off a forest service road forty miles into the high country from the town of Dolores, Colorado. I brought my running and cycling gear and racked my mountain bike for the 17 hour drive. Kelpy, my dog, remembered the plce from the last time we were camped in that area of the San Juan Mountains in the fall of 2009. We had an incredible four weeks together but I managed to come home empty-handed with my record-sized bull. I knew this might be my last time to hunt, so I wasn’t interested in anything other than a spectacularly built, mature bull. I elected to pass on taking one of two large bulls I’d called in, but they weren’t what I was after on this particular trip. Nonetheless, it was a great experience chock full of hunting adventure. I’d left for Colorado knowing my pain doctor wouldn’t be able to relate to such a trip and, as a result, went the last two weeks without pain medication, coming off oxycontin cold turkey just to be able to go on the trip.
When we got home, Kelpy and I were as fit as fit can be but, as anyone might guess, I was in tremendous pain. I immediately went in to see my doctor who was beside himself with anger because I’d not told him of the trip and was now back to get my prescription refilled. We couldn’t have been any different, that doctor and me. I knew that to him I represented some kind of enigma that he couldn’t wrap his head around. He’d never exercised in his entire life and was in more danger from poor health than I was. The most horrible thing I think we can have happen to us as human beings is to literally have our lives be in someone else’s hands. That is a baseline criteria for being someone in severe chronic pain. We need the help of someone we couldn’t possibly relate to in a hundred years and to have them be in a position to judge us and decide if they want to help or if they wish to hurt. Guys like this have always taken pleasure in making life difficult for guys like me.
After all I’ve been through, this next part will probably not come as a surprise, but five months ago, I was diagnosed with Stage 2 bladder cancer and about a month before that, an abdominal infection involving my liver had come back after putting me in the hospital, almost dead from sepsis (gangrene, blood poisoning) in March of 2023, just after my SI joint surgery and second round of resultant pulmonary embolisms (the first was right after my 2012 fusion surgery and that episode has brought me closer to death that anything I’ve since experienced). I was in the hospital for 34 days before the first three months of 2023 had gone by, 21 of those days from the abdominal infection. That, after coming back from all that came at me in 2023, I should have this sort of 2024 to deal with has tested my resolve and will to live to their very limits. It looks like I’m going to “beat” the cancer with the help of a very good urologist/oncologist/surgeon. My infectious disease doctor and I are still working on the liver abscess and will be for months yet, while I get to wear a fluid drain placed near my liver and a catheter to catch the daily effluent. In all of this, what I found validating was that as soon as I mentioned the word cancer to my pain clinician, he offered for the first time in four years to give me a “bump” on my pain pump medication that is literally pumping tiny amounts of morphine into a point he chose in the lumbar region of my spine. Is my pain worse since I was diagnosed with bladder cancer? Yes. Would I have gotten the “bump” if my pain had gotten worse for some additional mechanical problem like I already endure? Not likely. This is something I’d like to impress upon anyone reading this. Every day, cancer patients are spared the dehumanizing effects of being profiled for “drug seeking behavior” or performing a pee test in exchange for their medication. They have cancer, yes, they’re probably in a lot of pain. His spine is destroyed and he’s probably in a lot of pain. But does he have cancer? No. I hate to make such a comparison, but this is precisely the difference in care that I have received relative to a typical cancer patient. My point is quite simply that pain is pain, regardless of the root cause. It’s just not right to prequalify one group and give them ready access in mitigating their pain while effectively making it virtually impossible for another group of individuals, at least some of whom carry around that same level, or, potentially even more pain. Yes, they as a group are more than likely to be in pain, but my X-rays are shown below. Why don’t you tell me if you think I’m in pain? From everything I’ve written, does it sound like I’m a user of illicit pain medications who, for whatever reason, brought bad things upon myself? It’s all about context and perspective, which, when combined, form our perceptions. I’ve been dying a slow and excruciatingly painful death for thirteen years now. I have absolutely nothing to reach for when my pain is so severe that I curl into the fetal position, writhing and crying out in the dark of night. I just gut it.
It is our fear-based American culture that has made my world, and the many worlds like it, far more dark, lonely, and painful than it ought to have been. We did nothing to draw your ire, and, as a person who’s lived a highly productive life in spite of your actions, or inactions, I have every right to call-out the general public for what it allowed to happen to so many of its fellow countrymen. The government took its cues from the general public in determining how the “Opioid Epidemic” should be handled and the result was mass hysteria, with no dividing line between those of us who are simply in pain and those who posed a very real threat to greater society. As a matter of expedience, we were lumped together as if we were all part of the same bad seed. I was undeservedly caught-up in the war and am just one example of the collateral damage. It is nothing short of a miracle that I have had the resolve to have made it through to today, with nary a helping hand along the way. You would have to walk a mile in my shoes before you could even begin to relate to what I was so unnecessarily put through. It may be the first time you’re hearing anything that blows the lid off the pain industry but I believe that people should have required more definition on the subject before making such sweeping judgments that destroyed the lives of so many good people. I am only left to think that the world I live in now cannot be the same world I grew up in, playing my brand of asthmatic basketball until I would drop from exhaustion. There was something wonderful in my upbringing and the surrounding times that gave me the feeling that I was not working without a net. People today wouldn’t spend one minute thinking about what that kid might be made of, but people back then sure did.
It is my hope that I have revealed a perspective on the opioid crisis that captures things that go on as misunderstood, even today. Perhaps some of you are now more aware of the plight of those of us who are perfectly good people and solid citizens, but through no acts of antisocial behavior, we have been relegated to the bottom of the social ladder only to remain in severe pain until the day we die. Please reconsider your preconceived notions about people in pain and stop throwing perfectly good babies out with the bathwater.
X-rays are from 2012. Not shown are the laminectomy, or the 2019 or 2023 surgeries. There’s still time to make much needed changes in terms of how we choose to deal with people in severe chronic pain, but there first needs to be a much more empathetic public discourse on the subject. I may sound angry over what happened to me over the last thirteen years. I am, and I can no longer hide the way I feel about it. I think that I, and thousands of people who share my situation, have been treated like third-class citizens for a very long time now. We all look at things from our own perspective which includes our perception of ourselves. If we grow to become truly self-aware and introspective as we move through life, we become more capable of viewing things with a higher degree of objectivity. I would never knowingly lose my compassion for anyone in need and show them my back in lieu of extending my hand. That’s just not the way I’m built.
