Pain sucks.
If there’s one thing I’ve learned over the past year, it’s that being in constant pain absolutely sucks.
It’s not an original thought, I know, but there it is.
What should have been a minor soft-tissue inflammation issue turned into a year-long medical saga which has been vastly complicated by the COVID pandemic.
It was about this time last year that I began to experience pain in my left knee. This is the same knee which was injured when I was knocked off my bike by a hit-and-run driver back in 2003 and it’s been iffy ever since, but I’ve learned to live with it. This was different. This wasn’t the “it’s been a long hike so I’d better get some ice on it” pain, this was a “keep me awake all night with the throbbing” sort of pain. And it just didn’t stop. Some days were better, some worse, but the pain was always, always there.
By October I was learning firsthand how overwhelmed the medical system is at the best of times. Because of the pandemic our (now-former) family physician was not seeing patients in person unless it was an emergency and low grade, constant pain didn’t fit the criteria. After a number of phone conversations with him and his staff, we started a merry-go-round of painkillers and anti-inflammatory drugs on the assumption that it was the same kind of inflammation that had done the original post-accident damage. I learned a lot about drug interactions, idiosyncratic side-effects, and why they put those little “take with food” labels on gut-rotting, liver-shredding, kidney-killing medications.
Once again, nothing original there. Anyone who’s lived through (or is currently living through) any kind of hard-to-diagnose condition gets used to the routine of “let’s try this for a couple of months and see if it helps.” Long story short, nothing did.
Also a quick aside – my apologies to everyone who had to deal with me during the month of April; that was the month that we learned prednisone apparently triggers an idiosyncratic reaction that makes me extremely manic and irritable to the point of irrationality. (My spouse is an absolute saint.)
As the winter progressed the pain continued to get worse and worse, to the point that climbing stairs became a carefully rationed activity because every step was like driving a red-hot railroad spike into the joint. I’d gone from impulsively taking five-mile hikes to treating the staircase like it was an Everest expedition.
And then, for whatever reason, I began to have trouble with our family physician. Perhaps it was just frustration on their part, but by mid-February we began to have communications troubles… by which I mean the Doctor stopped talking directly to me and everything got routed through his staff, who in turn would take as much as a week before returning a call. I don’t know what was going on with their end of things, but it was definitely an additional level of complications that we didn’t need. Eventually, after quite a bit of begging and pleading, our physician agreed that we needed some medical imaging to determine a better plan. I was referred to a private clinic for X-rays with the distinct impression that I was being fobbed off, but at that point I’d come to believe any progress counted as good progress.
I was also, thankfully, referred to another doctor who specialized in orthopaedic surgery (although that came with its own issues when their office had to be closed for a COVID outbreak among their staff.)
In any case, the X-rays revealed that there was nothing wrong with the bones of the knee, and since the word “osteosarcoma” had entered my vocabulary that month that was a considerable relief. But since the X-rays didn’t pinpoint the problem I was eventually referred to the regional medical system for an MRI to examine the soft tissues.
Which started a whole other thing. My original appointment was cancelled with less than forty-eight hours notice when Ontario went into another province-wide shutdown in early April and all non-essential medical procedures were put on hold. It would be weeks until they could reschedule me – and even then I’d end up waiting until the end of May before they could get me a spot at the imaging clinic in Niagara Falls. At three in the morning.
I seized the appointment with gratitude.
All of this, mark you, while hobbling around with every step a spike of fire and, as I mentioned above, I had a drug reaction that made me manic… and when I’m manic among other irrational behaviours I also pace compulsively which is not particularly helpful when you have an undiagnosed inflammation in your left knee. Between the pandemic and the mobility issues, I had effectively become a shut-in. Worse, between the drugs and the pain I couldn’t concentrate on anything more complicated than videogames and David Weber novels. I’m sure anyone who reads this blog realizes that my writing dropped off dramatically last autumn and stopped entirely in early February… right around the time I started thinking of the stairs as a personal enemy.
By mid-May I had lost almost fifty pounds because I had no appetite – although I forced myself to eat breakfast and dinner every day in order to cushion the meds – and my clothes were hanging off my body. It was around this point that, in response to an inquiry about the side-effects of yet another drug, that our family physician relayed the message to me through his staff that I ought to lose weight and see if that helps, which is doctor-speak for “I’ve given up, fuck off.”
I’d been begging this guy for a face-to-face appointment for eight months. He’d been working from my file, which was three years old and did not reflect the current state of my health or my weight. I couldn’t even get this guy on a Zoom call.
So there we were, in the middle of a major medical issue looking for a new family doctor. We’ve been lucky enough to find one who’s taking this seriously and the orthopaedic surgeon has been super-helpful… although my breaking down in frustrated tears during my intake interview at the orthopaedic clinic might have built up a store of sympathy there, too. In any case, within a few days of the MRI results coming back, I was officially diagnosed with severe “patellofemoral pain syndrome”.
That’s doctor-speak for “His knee hurts and we don’t know why.”
The good news is that with an official diagnosis, we could do something a little more radical than just giving me more pills. Which is how I found myself back at the orthopaedic clinic on June 30th wearing nothing but a hospital gown and my last pair of halfway presentable underpants, waiting for the local anaesthetic to kick and in trying not to contemplate the size of the needles and probes and such that were about to be inserted deep into my knee joint.
Less than forty-eight hours later I was – literally – back on my feet. I’m astonished how well the procedure worked – the pain that was my constant distraction for nearly ten months was just… gone. A big part of that was the epic amount of cortisone they injected, but it’s amazing – and somewhat frustrating – that after months of throwing all manner of random shit at it all it took to fix the problem was a forty-five minute outpatient procedure. Arthroscopic surgery is some Star Trek level witchcraft.
Six weeks later I’m off anything stronger than ibuprofen, doing my physiotherapy religiously and puttering around in the garden, and it occurred to me this morning – for the first time in months – that what I really wanted to do was write.
So I guess that means I’m on the mend. According to the orthopaedic surgeon I can probably look forward to cortisone shots in my knee a couple-three times a year for the rest of my life (we’re still dialing in the frequency) but I’m doing better, going up and down the stairs with comparative ease, and working on getting back to normal.
None of this is unique, of course. My experience is pretty typical of serious illness in our medical system, with the happy addition that we seem to have actually overcome the problem in the end.
I’m grateful to everyone who put up with me. I’m especially grateful to my spouse who had to put up with me and help me navigate the healthcare system during a pandemic and who, I believe I have mentioned before, is an absolute saint. If you absolutely have to deal with a serious health problem, get someone in your corner who can advocate on your behalf when you’re exhausted or loopy or even unconscious.
Pain sucks. Not being in pain is amazing. I wish I could say that I have something more profound to add to that, but that’s what I’ve got.
