I have a bit of a confession to make: since about last July, I have been having trouble my hands. It started out with some sore knuckles on my right hand. I didn’t think much about it; I just figured it would go away eventually. Was only really trouble if I needed to grip something hard, like if I were trying to open a jar or tighten a screw or something. As time went on it was getting worse, not better, but I didn’t really want to admit that.
Starting by about November, my hand would be so sore and stiff in the in the morning that I started having difficulty doing things like brushing my teeth or taking off my shirt. At this point I realized that I needed to see a doctor. I couldn’t really pretend that it was going to get better anymore, but I think I was still just a little bit in denial. I was also coming up on my 40th birthday, and (it sounds stupid in retrospect, but) I really just thought I was getting old. You get old your knuckles hurt, you know? I just kept thinking, “Man, getting old sure crept up on me.”
I called and made a doctor’s appointment, but of course it was a 3 month wait to get in to see her. In the meantime I really just stopped using my right hand for a lot of things; it was just easier (and less painful) to get by with my left hand. However, I remember the specific morning in January when I woke up with stiffness and pain, not only in my right hand, but also in my left hand (well, it doesn’t hurt that Ollie and I were sleeping on a WWII submarine that day, so it kind of sticks in the old memory).
I am not going to lie: that shook me. Bad.
For the first time I realized that something was really, really wrong, and getting worse. My hands were aching all the time and some of my knuckles were swelling or had developed lumps. I was having trouble buckling Alex into his carseat, and I was avoiding playing with the kids because even a small bump of my hands was really painful. I couldn’t even think of doing something like playing guitar.
The stiffness was lasting longer morning, too. Both hands were difficult to use for about an hour after I woke up: kind of like wearing big oven mitts. I couldn’t really bend my fingers, only kind of pinch with my thumb, like a crab. I started taking Aleve morning and night, and it came in a sad, “easy to open” top. The saddest part is, I was truly grateful for that “easy to open” top.
In fact, this is going to sound like toxic masculinity horseshit, and maybe it is? But here it is anyway: throughout this whole thing, there have been a few times when I have been unable to open something up, and I will ask Sara to do it, and she is easily able to open it, and it has made me cry. Not because I felt emasculated, but because opening up jars was my job. Your hands are your identity. Who am I if I can’t play guitar, or knit, or write in notebooks, or do my assigned duties around the house, like open jars?
It seemed pretty clearly like it was arthritis, but I was afraid to even google it. Sometimes I would make Sara google it, but if she tried to tell me about what she was reading I would get extreme anxiety, and I couldn’t even listen (and I definitely, definitely couldn’t look at pictures!)
(Weird, writerly side note: around that time I picked up a story I had partially written about 6 months before, and upon rereading it, I was pretty startled to find not one, not two, but three references to the sore knuckles of the (older) main character! I didn’t realize it had been on my mind so much, all the way back then. Wonder what other kind of subconscious stuff has shown up in my stories over the years!)
Finally, my doctor’s appointment came toward the end of January, and by that point I was really scared and basically counting down the hours. It seemed like it was just getting worse and worse, all the time, and I just…needed something. Some answers. Some help.
The doctor ran a bunch of blood tests, x-rays, etc. and I breathlessly waited for my results. Everything came back negative. The x-rays showed some “degenerative cysts” on my knuckles, but those are not definite enough for a diagnosis. The doctor was like “Great news! Everything is negative!” and I was like “Um, yeah, only not so great? Because wtf is even going on??”
Even though I know it wasn’t true, it just felt like they didn’t believe me. I just wanted to say, “This is really happening! I don’t know what’s wrong, and it’s getting worse!” but it felt like without a test result, I was just making it up you know? I am a man of science; sure X% of people don’t register as positive on this test or that one, but…I’ve never been lucky, you know? I just couldn’t believe I was in the X%. I loathed those test results.
This was a really low time for me. I felt very, very helpless, and depressed.
I really should say that this was not my doctor’s fault; she was fine. I do have a bit of a quibble with it taking 3 months to get an appointment at a time when I really needed one, but that’s more the medical establishment at large then my individual doctor. No, most of this was going on inside my head. And to be honest I wasn’t ready to talk to anybody about it (besides Sara of course, so shout out to her for dealing with me through all of this!), at least until I had a little something more to go on.
So after the ambiguous test results (or should I say un-ambiguous because they turned up a big fat nothing), my doctor referred me to rheumatology. Of course that appointment took ANOTHER 2 months, which took us into March.
By the time that appointment came along, I had mostly climbed out of my hole and moved pretty solidly over to acceptance. My hands hadn’t gotten better, but they had at least stopped getting worse. I was taking a bunch of Aleve and I had learned to work around them a bit. The morning was bad, but I could kind of shave with my razor balanced on my thumb. The only time it was really bad was if I unthinkingly tried to grab the blanket too fast in the morning, or if one of the kids accidentally smashed my hand. In other words, I just…got used to it I guess.
Rheumatology did another whole bevy of tests (which also all came back negative — seriously, you have never seen such perfect lab work in your life), but that’s not to say they learned nothing: it seems unlikely to be Rheumatoid or Osteo-arthritis. Turns out there’s a whole slew of other kinds of arthritis. Who knew?
My next step was taking a course of steroids, which MAJORLY, GLORIOUSLY worked! It took awhile to get going, but by the end of the 3rd-ish week, my hands were basically back to where they had been the previous summer. Not cured, exactly, but no pain or stiffness for an hour in the morning, no general aching throughout the day.
It was wonderful, but steroids are not a long term solution. Though we haven’t yet been able to identify precisely the type of arthritis, we know it’s an inflammatory arthritis caused by my immune system (incorrectly) attacking my joints, and it most likely will continue doing that for the rest of my life, potentially causing permanent damage if left untreated.
THANKS FOR NOTHING STUPID BODY, IT’S NOT LIKE THERE’S ANYTHING ELSE GOING ON LIKE A SUPER STRESSFUL GLOBAL PANDEMIC THAT’S FORCING ME TO SIMULTANEOUSLY HOMESCHOOL MY KIDS WHILE TRYING TO WORK FROM HOME OR ANYTHING.
Perhaps it’s best to focus on the silver lining here: guess who just started on a hydroxychloroquine prescription? You might have heard about it? It’s been in the news a lot lately? And if I’m understanding what people are saying – the best people really – I’m pretty sure they’re saying that I am TOTALLY IMMUNE TO COVID-19 NOW. And you know what that means!
(My doctor says I am not, in fact, immune to Covid-19, but he didn’t take a stance one way or the other on window-licking.)
The stiffness and aching have returned a bit since ending the steroids, and the hydroxychloroquine takes weeks to kick in. I’m currently at about 20 minutes or so of stiffness in the morning, and my right hand is starting to ache throughout the day again. I’m kind of getting back to the point where I’m starting to avoid doing things with my right hand again, or warning Alex to be careful of my hand. My two worst knuckles have remained about the same, in terms of swelling, even when I was on the steroids, so not much change there.
Mentally, however, I am in a much better place. Seeing how well the steroids worked makes me feel confident that we can find something that can work (whether it’s hydroxychloroquine or something else), and my hands can feel relatively normal again. I’m not going to have to give up guitar, or knitting, or playing piano, or lose my job because I can’t type anymore. It’s going to take some time, but so what? I still have the odd moment when I feel sorry for myself, or I find something that I have trouble doing that I don’t expect, but everybody has something, especially now.
2 thoughts on “Hey Shane, there’s not enough going on right now, how about we throw a chronic disease on top?”
Shane, I’m so sorry to hear about this. Man, what a crappy thing to have to deal with.
I’m really looking forward to when this whole pandemic is over. You and I need to sit down for some coffee/beer and catch up.
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