The other side of opioids

Over the last eighteen months or so I’ve tried to get various publications interested in running a long form piece on the other side of the opioid epidemic: the side that tells the stories of just a few of the the vast numbers of people who are able to deal with what would in many cases be literally unbearable chronic pain because of these drugs. It may be of some significance that, contrary to my past experience in regard to pitching long form journalism pieces, I can’t get anyone interested in providing a forum for telling this particular story.

Here is a testimonial from a man who has been a friend for 20 years:

I’d love to take more time and tell the stories of people I’ve met during my pain journey, people way more fucked up than me, way more vulnerable than me. I’m a rich, white businessman, and I’ve been made to feel like a criminal or pill-seeker literally *dozens* of times by doctors, nurses and pharmacists – I cannot imagine what some of the people I’ve met along the way have experienced.

Anyway. I just had my 10 year anniversary of pain in February! I had some back pain on and off before that, but it was actually a trip Laura and I were on in Las Vegas in February 06 where it started to get constant.

I have two sources of pain (actually 3, with a herniated disc in my lower back, but it only flares up a couple times a year, so it’s barely worth mentioning).

My upper back pain started first, this weird softball shaped dull pain in the dead center of my shoulder blades. When it’s bad it radiates outward and feels like there are two steel rails of pain running down both my shoulder blades. That pain is duller than my neck pain, but the fucking *constant* nature of it is so incredibly debilitating. It just sucks out your life force over time.

My neck pain began in February 2008, so only 8 years of pain there. This is a much sharper pain. That one showed up very clearly on the MRI, a ruptured disc in my neck. Once that started I could not perform my full time job anymore. I struggled through the rest of 08, an almost daily torture chamber – the pain would really kick in about 1:00 and it took a miracle for me to last the day. The hours of 4 to 6 were almost unbearable. By February of 09, I couldn’t even work.

I was starting the prime of my career, the CFO of a small advertising and PR agency that I helped turn around, and I had to walk away. I spent the next 6 months sitting on my ass collecting disability checks (from our company’s private insurer – but I absolutely would have taken money from the government, and yeah , it fucking opened my eyes with regard to what it’s like to have no other options. We had savings, but I realized I was pretty fucking privileged in that regard, especially compared to the people I saw and talked to at the various pain clinics and doctors I went to. I also was blessed to be on COBRA and could maintain my health insurance, because otherwise I would’ve been fucked. I have no real opinion of Obamacare, except that if the current players are going to be given a handout and get even further entrenched in the system, then fuck them and I’m glad they have to take people with prior conditions. )

Anyway, during this period of misery – actually on Laura’s birthday in July 09 – I woke up with much worse neck pain than I’d ever had before. I couldn’t stand up straight. The MRI showed that the original disc was much worse, the one below it was now also ruptured, and another was in pretty bad shape. They rushed me through surgery within a month, and that surgery did save my life. The surgeon removed the two bad discs and replaced it with cadaver bone, and over the next 6 months, the whole cervical spinal column fused together.

It didn’t erase the neck pain, but I already understood by then that I would always have pain. But it helped ease the worst of the worst sharp pain. And even before that July event that *really* fucked me up, that sharp neck pain (combined with the dull but constant back pain) was devastating. I could barely function that spring/summer of 09. All I would do is lay on the couch and watch TV and stare at the clock to count down the hours-minutes-seconds before I could take my next pill. I was already on percocet for my back pain by the time my neck pain started, but that’s when I started taking higher and higher doses. I was on a long lasting morphine and short acting oxycodone (and various muscle relaxers and whatnot) – and it honestly still wasn’t enough. At least not enough to make the pain bearable. That’s a scary, desperate feeling, man – to have tried a zillion different treatments and drugs, and to end up taking a *massive* dose of opioids – and to still find the pain unbearable.

The doctors told me to do everything possible before surgery, and that made sense to me. I mean, you’re risking your spine, right? During that dark, dark period in 08-09, I tried fucking EVERYTHING, every single treatment and drug known to man. I’ve tried maybe 50+ drugs in my time with pain? (and only in the last 3 years have I found the right cocktail of 6 drugs that makes my life livable). I’ve done physical therapy dozens of times, I’ve done brutal regimens of exercise and stretching, I’ve had therapeutic massage, acupuncture, acupressure; I’ve been in traction for my neck pain, had tons of epidural steroid treatments, yoga, pilates, I’ve hired an ergonomics expert to set up my office. I’ve investigated possible causes and possible treatments with rheumatologists, endocrinologists, neurologists, chiropractors, I’ve worked with psychiatrists and psychologists who specialize in pain treatment to try to find non-pharmaceutical ways to deal with the pain. I meditate. I use a tens unit that sends an electic pulse along the nerve in order to crowd out the pain signal – and I’ve had a similar device implanted into my back that didn’t work out. I’ve tried many, many, many different therapies, from pills to injections to physical regimens to alternative medicine to ways to handle the pain. And I DO use many techniques and therapies today in addition to the opioids I use. But all those other therapies combined simply do not do the job the opioids do, period.

Where I am now:

My back pain is so constant in my life, almost literally there every second of every day, that when it’s not bad I can kinda tune it out. Which is the same as not feeling it at all, right? That’s my approach. But at other times , like I said above, the fucking constant nature of that pain, or when it gets especially bad, can be so brutal at times. It just slowly saps my strength, my energy, my enthusiasm for life. I’ve suffered through so many would-be great moments because of that fucking back pain. Times out with friends that I had to cancel on, date night with Laura, feeling just brutal fucking pain while visiting the Colosseum and Forum in Rome, a lifelong dream.

A lot of people suffering chronic pain have depression issues as well, and so have I. I take an antidepressant, but at times I feel like, “if you’re suffering constant pain, why *wouldn’t* you be depressed?” Is my brain chemistry actually affected? But I’ve definitely had some real low lows, some dark, dark periods. So I don’t fuck around with that.

Since the surgery my neck pain only flares up 4-5 times a year, for about a week per episode. And when that hits, goddamn I can barely function. The pain is so sharp, there’s no ignoring it like with the upper back pain. I really struggled with my job in Portland because of these flare ups. Since then I’ve been consulting here and there, and sometimes I have to beg off a project because of that pain.

I could easily go on permanent disability, and it’s certainly not my libertarian principles that stop me. It’s my libertarian *greed*, and my ability to make more money working than not! But sometimes it’s pretty fucking hard. And people say they understand, but I know damn well they don’t. Or don’t care. They feel like you’re not pulling your weight. Which is probably true. And so many bosses even now feel suspicious of someone “working from home” – even if that’s the difference for me between productivity and agony. Or needing to beg off at 4 instead of 6-7-8. Still so many close minded assholes who only know how to measure hours in the office and nothing more.

But I know the world isn’t going to change for me, so I have to figure out how to adapt with my issues. And I do everything I possibly can to make work and life easier on my back and neck. I immediately make my work station ergonomically correct. I set a timer app on my computer to remind me every 40 minutes to get up and do my stretching routine and walk around the office, get everything nice and loose . And outside the office I practice my stretching, my strength exercises, get my walk in, sleep in a very specific position that doesn’t aggravate my back or my neck. And I take my non-opioid drugs, my muscle relaxers, my nerve pain drug, my anti inflammatory, my over the counter pain reliever, my antidepressant that also works well for muscle pain – and yes, my opioid. Two pills twice a day. Ideally – from simply a pain perspective – it would be more. But the opioid brings a whole host of other problems. Constipation, low testosterone, potential liver issues, dry mouth (more annoying than it sounds), and a few others. I have to take other drugs to counteract the side effects of the opioid. But the opioid is the big gun. It’s the difference between a livable life and something horrific. I never seriously contemplated suicide, but only because of Laura. If I had been single, I might have come to a coldly rational decision that life isn’t livable with the pain I was in, and the amounts of opioids I was taking, higher and higher doses, more and more pills.

I even desperately tried to quit the opioids, for fear of something called hyperalgesia, where the opioids end up causing more pain than helping. I took buprenorphine – used for opioid addiction – to ween myself off the oxycodone. But the pain persisted. I felt pretty hopeless then.

Since then, the surgery helped, the nerve pain I’m on (gabapentin) has helped a lot, and sticking with buprenorphine as my maintenance opioid (an off label usage, and very difficult to find a doctor in a new city who’ll prescribe it that way) has been an enormous help, as I’ve maintained the dose I’m on for several years now – between that regimen and my physical routines, I’ve finally, finally, FUCKING finally managed to find something that works for me. After 10 years, dozens of doctors, dozens of pharmacies, dozens of insurance problems, dozens of drugs, dozens of other therapies – I found what works for me, and what allows me to live a fulfilling life.

I get absolutely no good feeling from the buprenorphine other than pain relief, although the dose I take would send you into a world of euphoria where Bo [Schembechler] is still destroying Woody [Hayes]. I’m still in pain much of the time. I still can’t play sports anymore, after a lifetime of it. I can’t walk a mile without hurting like hell. I have trouble walking and standing around in, say, a museum. I sleep like shit. I suffer from multiple side effects from the opioid. I’m probably torching my liver. I have to cancel plans with Laura and friends frequently. Work is often unbearable in the later afternoon.

And I still get treated like a *fucking criminal* with new doctors and new pharmacies. Woe to the pharmacy clerk who gives me the once over when I try to get my buprenorphine one fucking day earlier than I’m supposed to. I’ve literally brought several of these fucking lifestyle bigots to tears, including a couple times on someone else’s behalf. I’m spreading the word, one weeping clerk at a time, that some people legitimately need these fucking drugs to live their lives! And fuck the junkies. Fucking fuck them. They’re gonna find a way to get trashed anyway. I’d rather a thousand junkies get another hit that they’re gonna find one way or another anyway than one person suffering chronic pain not get the medicine they need.