Legally Blind #12 – The Hunchback of White Sulphur

I’m not staring at your boobs.

Well… yeah, okay, I kind of am, but it’s not on purpose. Please don’t slap me. It’s a disease, and not some sexually perverse one. It’s called ankylosing spondylitis.

Before you ask, no, it’s not really tied to my eyes at all, but my diagnosis did actually come about as a result to a visit with my amazing eye specialist Dr. Patricia Cosgrove (who will warrant an entire blog dedicated to her and the fine folks at Medical Eye Specialists in Bozeman, MT, with whom I’ve been a client for about two decades).

About eight years ago, I started to develop chronic pain in my left shoulder, which was initially diagnosed as complications from a torn muscle thanks to a sedentary lifestyle. I lost most of the range of motion in that arm, and despite working out and trying to rehab it through the years, it’s still only at about 80% of its normal range of motion. Not great, but initially just irritating.

About three or four years ago, I started to develop an irritating constant crick in my upper back and neck, which developed slowly into constantly tensed shoulder muscles and a slight stoop to the angle of my neck. I literally could not relax my back muscles – still can’t, by and large. If you want to try to emulate this, do a sit up, hands reaching for your toes as far as they can go. Feel that stretch in your muscle when you hit about the three-quarters mark? That’s the way I feel on a minute-to-minute basis. Not fun.

But that wasn’t the end of it. About two years ago, when I laid down at night, my back would remain tense until I felt an odd little shuffle in my spine, a sort of forced relaxation of the bones there that would leave me gritting my teeth and practically shouting from the sudden jab of pain. If you’ve ever fallen and felt your spine accordion, that’s what it felt like every night when I went to bed, along with a distinct pop of some of my vertebrae. Now that was worrying.

And here’s something I didn’t realize was wrong with me until I was treated – I was tired. Not your average, every-day fatigue, but bone tired. I slept at least ten hours a day, something I’d done since my sophomore year of college, and I still felt sleepy almost every day. More on this in a second.

Me being an idiot, though, I figured it was just a posture thing. After all, I’m a fat man with a sedentary lifestyle, so hey, of course I’m going to suffer a bit of back pain, right? No need to get it seriously looked at. I had a couple of x-rays here locally, got a prescription for some mild painkillers and a muscle relaxant, and figured the problem would work itself out.

A few weeks or months on, and I go to visit Dr. Cosgrove for a regular eye appointment (well, regular for me – I’m guessing most of you don’t have to endure the dilation and half-an-hour of lights shining in your eyes to make sure your lattice structure isn’t shredding like toilet paper after a Taco Tuesday). Dr. Cosgrove read over my recent updates to my case history, and saw the discomfort when I had to put my chin in the Mickey Mouse contraption she uses to shine her eyeball cooker of a flashlight into my retinas.

We went over the history of my back pain, and I expected her to say what me and every other medically trained individual thought – live a healthier lifestyle. Instead, she asked if I’d been to see a rheumatologist, which aside from sounding like something only an elderly person would need to see, is extremely hard to spell. It’s the “a” instead of the “o” that gets me. Anyways, I kind of laughed her off and told her I’d just lose some weight and it wouldn’t be a problem anymore, but she told me if I had what she thought I might be diagnosed with, that it could severely affect my eyes somewhere down the line, either through infection or inflammation (or something similar – I’m not great at the medical science part of this).

I wasn’t laughing so much anymore. We scheduled something with Dr. John McCahan out of Bozeman Health, who took a long look at my back, my posture, and my case history, and agreed it was worth testing for.

I’d been in some pain for a while, but getting those tests done by the lab in Bozeman is maybe only third in terms of pain to some of the worst of my migraines and my infrequent fights with bursitis in my hips (which may have been related to an unnamed hip disease I found out I had at the same time as ankylosing spondylitis was diagnosed).

Getting my blood drawn wasn’t really the problem, but if you’re an aspiring lab tech and your future patients tell you it’s going to be easier to draw blood from their hand instead of the crook of their elbow, please do them a favor and listen. Don’t look at it as some personal challenge. The guy must have jabbed me eight times in the arm before deciding I knew what the hell I was talking about.

The real pain came from the X-rays I had to take – and I had to take a bunch of them. Holy shit, even the memory is making me want to break out sweating. There were a few that could be taken standing, which was fine, except the x-ray tech kept telling me to stand up straighter, which – spoilers! – isn’t possible for me anymore. I kept trying to tell her I can’t, but she was new and, more dangerously, obstinate, mostly because she’d never had to deal with a case like mine. Story of my fucking life when it comes to doctors.

The real, unsweetened pain came when she told me to lie down on the x-ray table. I treid to tell her I needed something to prop up my head, but she said that would taint the x-rays. Couldn’t be done, she said. I tried. I laid there shaking like a leaf, sweat from the muscle spasms rocking my body forming little lakes under my head and rolling down to my bare ass hanging out of the two-sizes too small “one size fits all” hospital gown.

Also, screw hospital gowns. Give your big patients sheets, or big beach towels, or something less humiliating than that crap.

Anyways, there I was, trying to bite back a scream when spasm after spasm was hitting me like ocean waves, and all the while this baby-fresh x-ray tech is telling me, N”no, no, you have to lay down straighter, you have to try harder to hold still.” I’m biting my tongue, because not only am I in just miserable amounts of pain, but Creed comes on the goddamn radio. Creed. As if my misery wasn’t complete enough.

Finally, the x-ray tech sighs in annoyance and calls down her supervisor from an extended lunch I’m guessing took place in Vietnam, considering how frigging long it took her to show up. She sees the distress I’m in, calmly tells me to try it one more time (which turned into another three or four times), and then they finally realize, oh, hey! This guy in pain might know that he’s actually in pain and needs a pillow to brace his head if they want to get an x-ray. Shocker!

I came out of there something like two hours after I went in, white as a ghost and having sweat so badly I could have drank a gallon of water. And probably did – I drink water like a camel even under the best of circumstances. But the tests were done, and I was called back by McCahan’s office to tell me a few weeks later I sure did have this funky disease called ankylosing spondylitis.

So… that aside, what is AS? It’s basically an inflammatory disease. My dumbass healthy cells got confused somewhere along the way and started attacking my spine’s healthy cells, confusing them for outside invaders. Sort of fitting – I’ve been playing video games my whole life, and now my white blood cells are playing their own game of Space Invaders inside my body as some sort of gross fit of karma coming back to bite me in the ass – or spine.

That’s a very basic definition, though, and the reality is a bit weirder than that. The AS has actually caused spinal growths on my vertebrae, leaving me with an upper spine as stiff as a board from the base of my shoulder blades to my neck. I have a limited range of vertical movement in my neck, which fluctuates a little, but not by much. It’s not something that will heal, at least not with modern medicine. Maybe someday they’ll implant me with some sort of Terminator spine, but I’m not counting my breath.

The treatment is basically a means of creating a holding pattern in my body – I can’t improve, but they’ve essentially halted the disease in its tracks through treatments. This treatment unfortunately has one big drawback – my immune system is now, effectively, as useless as a condom with a hole poked in it. Sure, it’s there, but it sure isn’t doing a whole lot.

That said, the effects have been astounding. As I mentioned before, I didn’t realize how tired I used to be until I was diagnosed and treated. Where I was sleeping ten to twelve hours a day, I’m now sleeping maybe six or seven, tops (with an occasional nap thrown in). I’m up every day by about eight o’clock at the latest, no matter how much I might want to sleep in. I’ve got a fire in me now that I just didn’t have before, and I feel the need to go, go, go.

Better sleep and more energy has put me in a better mood, too. Though I’ve slipped on losing weight, I still feel like I’m energized spiritually to do it, to get out on the track and push myself.

And in the most visible sign of improvement, I wrote. And wrote. And wrote. From June of 2016 to May-ish of 2017, I produced five novels averaging about 110k words apiece. Counting rough drafts and synopses, in the last year and a half, I’ve produced well over 1.5 million words. I’m not bragging about this – I could and will do better, because I’ve been graced with all the free time a person could ask for and very few responsibilities except to myself and my dogs. Given that amount of free time, i should be producing a book nearly every other month, if not faster.

But it’s a hell of a start considering I spent the last six years prior to 2016 doing little more than shitting, eating, sleeping, and consuming media.

I write all this especially to those of you males in your late twenties who might be suffering from chronic back pain. Get yourself checked out. Don’t be satisfied until you have a solution for your problem, and I’m not just talking painkillers or muscle relaxants here. Find out if there’s real treatment before it leaves you staring at chest level the rest of your life – which, believe me, leaves you pretty wanting in the dating department.

And to those of you with boobs, boy, am I sorry.

Author: therealcamlowe

Writer, occasional victim of pug crop-dusting.

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