Sharps Box

Yesterday I was due for my second COVID vaccine but I couldn’t get it because I’ve got a sinus infection.

I’m on antibiotics for a sinus infection, which have plagued me my entire adult life — I’ve undergone two sinus surgeries, experienced more infections than I can ever count, and was gifted with very small sinus openings (according to the surgeon who reamed my sinuses and removed chunks of diseased bone in 2014). My father also fought sinus problems, and swore by Sinutab, a wonder drug that may not even be made any longer. It worked, even as those blister packs took extreme patience to open.

Being on antibiotics means that I can’t take the biologic drug prescribed for my ankylosing spondylitis. There’s a risk of liver toxicity, and probably other interactions that aren’t good for my already inudated-by-drugs body.  So while I treat the sinus infection, I can’t treat the effects of AS, and I’m feeling that, acutely. 

One of the primary markers for this autoimmune condition is low back pain. Millions of people suffer from low back pain, particularly in the L4 and L5 vertebrae. As you can imagine, the base of the spine takes a fair amount of abuse and neglect. But in my case, because of the extreme inflammation in my system, my body saw the wear and tear on those vertebrae as something to be fought, and so it mounted a response, which led to it building a ring of immoveable calcium around my spine. 

Let me try to tell you what that feels like.

It’s not muscular, nor it doesn’t follow a pattern of spasm, release, spasm. It doesn’t burn, at least not in my back (my hands are another story). It feels like how the worst menstrual cramps felt, minus the abdominal discomfort. It feels like an ache that extends to the core of my earth. There’s a specific triangle of pain, an old hand plow, that Vs into my sacrum and radiates outward. I’ve awoken with this pain for the better part of 12 years, though it varies in intensity and in the time it takes for me to shake out once I’m moving. In the last two years, it’s taken longer and longer for that ache to calm and for me to walk without looking like I’m about to fall over. 

If only that was the primary symptom, but systemic inflammation doesn’t work that way. Each day that passes without my AS medication flowing through my bloodstream, my joints grow more and more painful. My neck, shoulders and wrists are the worst. I’ve been doing stretches for my neck, and they seem to help some, but this tension in my lumbar spine is doing a number on my neck muscles. I understand better now that this is part of how the disease progresses, but the neck issue is disturbing. It feels so…critical.

There’s this turn on 6^th Avenue here in Denver, a sharp right-hand curve at Colorado Boulevard, that requires one to swivel one’s head way over the left shoulder. The last time I was going to an appointment in that area, I hit the curve like I’d done so many times before and this time, I couldn’t look over my shoulder. I couldn’t even get halfway. My neck popped and cracked like mad. That’s been an unnerving development – my neck never used to make any noise. 

And then there’s the lethargy. It’s like the flu, comes on fast. Faster at times. Can be out of the blue or creep in, a dark fog rolling in from the depths of Heavy. 

I have too many moments when I think: My God, what is happening to my body? What have I done to invite this? I took what I was dealt and did my best to survive. No use denying that my agents of survival were not always wise or supported good health outcomes, but…really?

When I was on Humira, something happened to my body that was akin to anemia, yet blood tests revealed normal iron levels. I had dark circles under my eyes, peed way too often, got dizzy at odd times, could not think clearly and got lost easily. (Getting lost is not something I do. I inherited my father’s innate sense of direction, as well as his love of maps. The real ones.) I switched to Enbrel, which meant I was injecting one a week as opposed to biweekly. Not ideal. This also explains why I had to stop a week-long course of antibiotics instead of threading the needle between shots.

Measure approximately two inches to the right or left of your belly button. Clean the area thoroughly with alcohol swab. Pinch or stretch the skin. Place injector at 90 degrees and push down the top button. Watch the medicine pass into your body via the window on the side of the injector. You will see a yellow stripe. Wait 15 seconds. Release. Discard injector in sharps box. 

Sharps box. I have a sharps box in my house now.

What surprises me is that I don’t know anyone else who has ankylosing spondylitis. Or maybe I do, and I’m not aware of it. I’ve done my best to stay away from the interwebs and the horror stories there. Like most auto-immune diseases, AS varies in intensity – some people have nary a symptom save for some occasional back pain and random bouts of iritis, whereas others are wearing back braces and ordering wheelchairs.

I don’t know what the future holds, so I take to heart the advice of my friend Joel, a Buddhist-centered therapist, and I “keep writing about it.”  It’s the only thing I know that can temper the fear that this disease is a beast whose sole desire is to inflame me dead. I’m far from a place of acceptance, but I also know that speaking it, releasing it via the written word, is the only way through.