Folks, I gotta admit something. I'm pretty scared right now. I wish I could go back to a week or so ago, when all I had to be scared about were the emotional troubles of someone very close to me, the physical troubles of two people I care about very much, the ongoing problems experienced by someone incredibly important to me, and our financial difficulties. However, the universe is rarely that kind. We don't get to deal with one thing, wait a while to recover, deal with the next thing, and so on, like a children's video game. So it goes, so it goes.
So what's got me agitated? This x-ray.
Now, that doesn't look good, does it? For five days, before the report came in today, I studied this and mulled over it, coming to the conclusion (in combination with my symptoms) that I probably need surgery. Now, I don't like to freak out about things, and I'm an excellent amateur researcher, so of course I referred to photos of normal scans, photos of scans of various types of arthritic damage, photos of implants, and so on. I read scholarly papers and patient testimonials and teaching materials for orthopedics students, and I've learned a great deal. I eagerly awaited the report, anxious to compare my conclusions with those of the radiology tech who examined them. Now that it's here, I find that it says "discopathy and arthritis". Well, I can see that! Sheesh.
The report came in about an hour after the window during which I can call to make a doctor's appointment, so I'll have to do that tomorrow. Everything I read suggests a rehab doctor wouldn't be able to do much with this before somebody else goes poking around in there with a scalpel.. obviously, I hope to find I'm wrong about that. I also hope I can get a neck brace for meanwhile; this hurts. I'll keep you posted.
Now how, one might ask, could I have been so irresponsible as to let things get this far before going to the doctor? Well, I didn't. Three years ago, increasing tingling and numbness in my right arm, a tendency to stumble to the left, a stiff and sore neck, and a shoulder that was always sore and tended to lock up, all of which I had been reporting to the doctor as time went on, got me sent to the wrong specialist. A rheumatologist. I have nothing against rheumatologists, they do extremely important work and their expertise is invaluable. The problem is, it's pretty clear now that I should have seen an orthopedist instead, and also this rheumatologist was not a good person. Oh well.
She came at me already judging right out of the gate. Many years before, a different rheumatologist had suggested that "some" of my complaints "shared some characteristics" with fibromyalgia, and apparently this was somewhere in my notes. Because I was presenting this time primarily concerned about the locking shoulder, painful ankle, sore knees and general fatigue, she only looked at those, poking and prodding. When she didn't find "anything wrong", she started lecturing me about how she didn't understand why I was "resistant" to the idea of having fibromyalgia (which hadn't even been mentioned by either of us up to this point). I needed to "stop fighting" the "diagnosis" and "listen". It was obvious she'd decided I was wasting her time — not on purpose, mind you; she clearly assumed that I "didn't like" the idea of having fibromyalgia because there's no clear treatment protocol, medication, or other "easy fix", and I was looking for her to provide one. What made this so bizarre from my end was how out of left field it was. Fibromyalgia hadn't even been presented to me as a diagnosis in the first place, only mentioned years before as an idea of something that might possibly be playing a role. Nonetheless, here was this rheumatologist acting like I'd been told in no uncertain terms that it was definitely the situation, and had run immediately to a different doctor, looking for a different answer, one I liked better. Once I made it clear that I actually was open to the idea that I could have this "disorder", a catch-all term for a specific collection of not-yet-fully-understood symptoms, she relaxed a little bit and suggested that I could benefit from a rehab program at the hospital.
She did mention that my spinal hernias — neck and lower back — mentioned in my dossier do exist, but that it was her opinion they weren't bad enough to be causing the majority of my pain, and therefore a program of education and strengthening would be a good idea. This made sense to me. I did ask her why my right arm goes numb when I look to the right, and why my neck increasingly makes truly horrific crunching noises, and she said, irritated now, "you're not getting any younger, you need to start getting used to the fibromyalgia, you're just getting older".
It is worth mentioning in her defense that the really collapsed disc on this x-ray was nowhere near that flattened out three years ago when she drew that conclusion, so I don't blame her for that part. However, her dismissive attitude and general irritation also gave me a "why bother" complex about trying to get help when things continued to get worse; what was the point if I wasn't going to be taken seriously? It's only after a dramatic increase in my symptoms/decrease in my abilities, which I now blame on having dealt with the Brick Pile in the garden last spring and summer, that I decided that it was definitely coming from my neck after all and absolutely getting worse. Still, even though editing photos is agonizing for my shoulder and it's hard to find a position to get any sleep in, I didn't go in – there's a pandemic on, and I don't like to waste people's time when all they can do is send me to physiotherapy when I don't have enough physiotherapy appointments available in a year anyway to see properly to any one thing, I'm used to pain, I still assumed there wasn't really anything anybody could do anything about it, blah blah blah. Yeah, I'm a dumbass, I know. Only in the last couple of months, with increasing weakness and pain all through my arm and absolutely constant neck and shoulder pain, have I considered going in, but I was busy with my left hand, with its arthritic thumb, and didn't want to keep piling things onto myself. However, my ergotherapist announced recently that we couldn't keep doing strengthening exercises for my left arm until my neck was looked at and something done about it. Thus, this x-ray.
I don't know where things are going from here, but I'm scared and I'm sad. I'm scared not so much about surgery itself, if I need it, which I think I do. I've read enough about the different types by now to know that it's usually successful, the complication rate is relatively low, all that good stuff. But the recovery period... I don't like being weak, I don't like being vulnerable, I really, really hate the idea that a big dog could come bounding happily up to me and I would have to be afraid of sustaining damage by cuddling its good self. How sucky would that be? I don't like the idea of weeks to months of healing before I can hang out laundry on the regular, hold my camera up to track a bird, manipulate photos for hours, garden. Even now I got cocky a few days ago and thought maybe I could still finish lifting the flagstones; I was wrong, and the days of muscle spasms in my neck taught me a lesson I didn't want to learn. And the garden still looks like crap.
And that's where we get to the sad part. I'm a strong person. I work, I do manual labor in the garden or intensive building projects and whatnot, it makes me feel good. I had honestly hoped to be able to get that back; now I know I won't, and that is a keen loss. Traditionally, when I can't work like that, I walk. I walk with a will, I walk briskly. I walk city streets, duneland paths, parks, everywhere, taking pictures as I go. This has been increasingly hard for me — even on a day when I start out feeling what for these days counts as pretty good, it could turn out that an hour or two of rambling around chasing down photo ops and petting dogs is a good day and I can do some housework afterward, edit the photos, feed the fam, all the good stuff, but on other days, I set out with my handy rolley trolley to the shops only 15 minutes away for cat food or vitamins and before I'm even there I'm limping badly and can barely drag my feet forward. All that time, I believed fibromyalgia-lady and tried to take her advice and learn to accept that this is just how it is now, no matter how odious such a thought might be. She had told me, after all, that my problem lies in not "accepting" and "getting used to" having fibromyalgia. Oh, and in being fat – more in a minute.
This brings us to my one ray of light: no matter what treatment is decided on for my neck, most if not all of this bullshit is definitely coming from there, and from the hernias in my lower back, even though I probably do also actually have fibromyalgia. Maybe. Why is that a glimmer of hope, you ask? Because the walking, at least, I might be able to get back. Even if it's a year, even if I'm limited in how high or how long I can hold up my camera, even if I have to start small, if they can treat this neck, I can probably walk again the way I need to.
Another element of the appointment with the rheumatologist that has sat poorly with me ever since was our bizarre and humiliating discussion about my weight. I was very heavy at the time, and I'm still overweight now, although nowhere near as big. I'm active though, as I've pointed out; back then, three years ago, I was still able to regularly do heavy yard work for hours at a time, hike into the woods with my kid and build a shelter out of branches, carry home a bookshelf and a bench from some moving-out pile a few blocks from my home… All of this was not only in my file, open in front of her to the relevant page, but I had just told it to her. The rheumatologist pointed out, correctly, that when people have problems with fatigue and pain, particularly in the joints, losing weight can be very beneficial. I repeated to her, while pointing at the relevant paperwork, that I had been trying to lose weight for quite a few years, intensively. I described some of the diets I tried, my three visits to dietitians and the subsequent programs I followed with them, my work with my general practitioner regarding weight loss, and I re-emphasized my active lifestyle, pointing out that I hadn't even lost any weight during the years I commuted several times a week between cities on my bicycle for a total of 2 1/2 hours intensive cycling each of those days. She replied by suggesting I might try going to a dietitian. After a little bit of back-and-forth with me repeatedly tapping the words in front of her referencing the several visits to dietitians which I just told her about, I finally said fine, I will go to a dietitian a fourth time, emphasizing the word "fourth". She said she was glad I was going to take it seriously now.
Then, despite everything I had just described, she started in on me about exercise. She said — get this — that I should try to get some. I once again repeated the list of my usual activities. When I was done, she suggested that because it's difficult for people of my weight to get started, I might try getting going with 20 minutes of walking, every other day, and work up from there. I did try again to tell her about myself, but it was clear she was convinced I was lying. Finally she snapped, "Well then, I have no idea what's going on, because if you really did all that, you would lose weight." Now interestingly, somewhat over a year ago I developed microscopic colitis and had to stop taking ibuprofen, which I had been taking every day for decades, and six months later — congruent with the amount of time one sees online as needed for the gut to recover from chronic NSAID use — hey presto, I started losing weight. It's not going quickly, but it is still happening. Might be something in that. I do really miss ibuprofen though.
Thus it was, while I took part in an extremely valuable rehab program focused on my back hernias, during a period of time when I was also suffering from clinical burnout, that I assumed she was correct — I mean, she IS a medical specialist, after all — and that the increasing soft tissue pain in my arm, neck, and shoulder, combined with weakness in my right bicep, were fibromyalgia just like she said, and I needed to suck it up and get used to it. In the last six months, though, things have become so bad that just holding my head up is exhausting, I've lost around 30% function in my right arm, if I don't focus on my posture and force myself into a military pose constantly I crumple up to the right, and so on.
I stopped being stupid about things and went to see my GP last Wednesday. She ordered the x-rays of my neck for obvious reasons, but also of my left ankle because it's never fully recovered from a bad sprain several years ago (x-ray normal), my right knee because it's never been pain free since a few accidents back in the past (x-ray normal), and my left knee because it's started being even more painful than the right one sometimes and making interesting crunchy noises (x-ray normal). Although those problems are still extant and will need to be looked into, it looks to me like we'd better sort my neck out first. Or concurrently, I suppose, but I have a lot of other stuff on my plate and don't have time for any of this in the first place. Oh well, so it goes.
Well, my good folks, this has got a bit long for a basic intro to my current banal woes, so I'll drop it here. You stay safe out there, okay? You stay well and look out for yourselves and each other. I'll keep you posted about this — who knows what kind of adventure this will make of itself, or where this road will lead?
Enjoy a few photos.
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