As I mentioned, I was jogging three solid miles every other day and commuting so unabatedly by motorcycle that I’d put my beautiful black, but largely unused Mazda RX3 up for sale, when suddenly, and without warning, I had to stop jogging. I tried several times over a week long period but every time I’d go out my left knee would start feeling like it was held in place by increasingly loose rubber bands.

Slam, snap, slap!

It’d go.

Slam, snap, slap!

I couldn’t even run fifty feet without the pain becoming unbearable and the looseness become, well, looser. So I did what any smart as(s) shit introverted software engineering autistic person would do, I spent days researching exercise induced injuries, specifically knee related injuries associated with jogging, and put together three or four pages of appropriate physical therapy which I began in earnest. Fine. I wouldn’t be jogging for a couple of weeks, maybe a month, I’d be able to get back to leisurely walk-jog-runs, work my way back up to three miles again.

So I stopped running. I started my own home grown version of physical therapy including hot and cold packs, over the counter inflammatories, etc. And I tried to at least engage in a mile or so long walk every other day to keep my strength up. But as the weeks slowly passed my knee was starting to cause difficulties during my walks, so I started curtailing those. After about a month the burning pain had spread to my left ankle and was red hot, even when I’d been doing absolutely nothing all day.

You’re not a doctor, I admitted to myself, time to check in with an expert.

So I set up an appointment with an orthopedic sports specialist down the road and, as was typical back in the 2000’s, was able to see him within a week of making the phone call. I went in, fairly confident he’d do an examination and, after listening fully to my well mapped out fitness improvement plan, order and x-ray as well as send me to a professional sports therapist. Straight forward, easy peasy right?

Here’s what really happened.

As I laid on my back, explaining all my symptoms and what I’d been doing to try and help heal whatever damage I might have done, he examined my leg and knee, manipulating things this way and that, all the while nodding as I talked, asking few questions, but not entirely engaged. After a couple of minutes he said there was nothing out of the ordinary going on. I asked about physical therapy and he said, no, he didn’t think that was necessary, but he’d provide me a pamphlet of stretches and exercises to engage in over the next month. Still in that “I trust doctors, they’re smart and they care and I can trust them” phase of my life I shrugged and said, “Okay.” He wished me well and a few minutes later a nurse came to escort me out. On the way to the front desk she pulled a handful of papers off the photo copier and handed them to me. “Here are the things the doctor wants you to do,” she said. I flipped through the badly photocopied sheets (that had obviously been copied from previous copies so many times the originals must have been from the early 1980’s) ready to ask questions about any exercises that didn’t make sense (nobody there seemed at all interested in walking me through them) when I realized that every single thing on those blotchy, unjustified copies was something I had already been doing for over four weeks now. I say this again: I had already been doing every stretch and exercise on these ancient photo copies religiously! So I stopped in my tracks and told the nurse, “I’ve already been doing these religiously for the last four weeks and I keep getting worse. I think I need to see a physical therapist and get an x-ray.” “Well,” she answered with a shrug, obviously too busy to bother the doctor with this, “Just try it for another month, see how it goes.”

So I did. And I continued to get steadily worse. Went in after another month. This time the doctor ordered an X-ray. Nothing on that. I got worse. He ordered an MRI. Nothing. I got worse. Still no physical therapist. Finally, my primary, seeing how bad I was getting, and seemingly more interested in a patient that didn’t need obvious surgery, sent me to a physical therapist (as a side note, I’ve often encountered doctors who will pooh pooh symptoms because they’ve seen worse—run from these doctors as fast as your legs will take you!). I did that religiously—on and off for years—but never got better. And nobody—absolutely nobody—seemed to ask the question, “Maybe something worse is going on with your body, something that doesn’t show up in the standard blood tests, maybe this is serious, and maybe, just maybe, we should figure out what it is before it becomes serious if not life threatening.”

Seven or eight years later I started to notice that my left kneecap wasn’t “right” when my knee was bent. The outline, when viewed from the top, was sharp, pointed. Having lived in my body for over 30 years I was pretty intimate with its details so I mentioned this to my primary hoping she’d recognize that whatever was going on had caused gross damage (and was slowly but surely doing this to other joints). She shrugged, said some bullshit about bodies not being perfectly symmetrical (without explaining why it had been for 30+ years but suddenly wasn’t), so I did what any smart as(s) shit introvert software engineering autistic person who’d been been treated like an annoyance or hypochondriac by the medical system would do, I called up a new orthopedic doctor, this time using the now blossoming tool of internet reviews to choose a hopefully good one, he did an x-ray, and guess what? Permanent, obvious, damage to my knee! Who would have guessed?! Whatever had been ravaging my body for about a decade at this point had been slowly causing permanent damage, something I’d suspected and warned doctor after doctor, specialist after specialist, for years and years. I was no longer someone they could throw meaningless labels like “chronic fatigue syndrome” or “fibromyalgia” at without any supportive scientific evidence. There it was, on that black and white x-ray film, the smoking gun that whatever was ravaging my body was causing visible damage to my body. It was time someone started taking me seriously.

But no one did—well, at least not for another three or four years—but that’s another story where something as simple as a doctor who listened, cared, knew what they were talking about, and was willing prescribed a couple common antibiotics, had me able to jog again.

Moral of today’s story?

If a doctor prescribes a treatment, and it’s one you’re already on, one you’ve already been trying for weeks, months, or years, but you’ve experience little to no improvement, refuse to leave their office until they’ve provided additional or alternate treatments or do more testing. If they don’t have any to offer, ask them to refer you to someone who is better able to serve your needs. Don’t put up with their lazy bullshit or the often implied message that you somehow failed to follow your previous prescribed treatment(s) correctly. You deserve to be treated with respect, validated, heard, and provided a treatment plan that makes logical, factual, and scientific sense. If your doctor can’t do that you need to walk away and find someone who’ll at the very least do their goddamn job.

My closing thoughts for the day.

G’nite,

Aslynn