Hi. My name is John, and I’m a COVID Longhauler.
Six tiny white pills are piled here on the desk next to me this morning, and I’m going to take them.
These pills and their brethren in the safety-capped orange bottle next to them represent what very well might be my last hope to fix a mouth that has been in rebellion since November 2020, five long months ago.
Every single day since then, my mouth has felt … disgusting.
Hi. My name is John, and I’m a COVID Longhauler. It was jarring to be back in a doctor’s office waiting room today, to hand over my insurance card and driver’s license to be copied, to fill out the paperwork answering questions that were just going to be asked again by a nurse and then…
Hi. My name is John, and I’m a COVID Longhauler. I have never wanted so badly to have a cavity. Or an impacted wisdom tooth (whatever that is). Or need a root canal. No sane person ever wants these things. Longhaul COVID has a way of chipping away at a person’s sanity. As I recently…
HI. My name is John, and I’m a COVID Longhauler. The most powerful force on the planet has nothing to do with gravity, the ever-changing magnetic poles, love or faith in a deity. Not even close. Rather, the most powerful force on the planet is your tongue’s need to probe any place in your mouth…
Every day, I hope things are going to be different. And, randomly, sometimes they are … for part of the day. That nasty taste isn’t quite so nasty, not quite so metallic or acidic or putrid… I still can’t find the right word or words to describe it. My tongue doesn’t feel so leathery or fuzzy or numb… I still can’t find the right word or words to describe it.
But it always comes back. Every. Single. Day.
The thing is, there’s nothing there. Multiple doctors have looked into my mouth and they don’t see anything unusual — despite what I feel.
The thing is, I’ve gotten used to it. I don’t remember what “normal” feels like. This is normal. So I brush my teeth over and over and over, and I swish mouthwash around over and over and over, and I single-handedly keep the Tic-Tac industry afloat, all to address a situation that does not physically manifest itself.
I went to an Ear, Nose and Throat doctor recently. It was a Hail-Mary after my primary care physician and the doctor who sees me at the Longhaul Clinic run by Washington University essentially said, “I got nuthin’” when it comes to my mouth.
The ENT said it might be my chorda tympia nerve, and I’m always happy to learn about a new part of my body. This nerve runs from your brain, through your ear, around your face, over the hill and through the woods before meandering past your tongue. A damaged chorda tympia nerve can seriously mess up your sense of taste.
So she ordered an MRI, and on Monday I found myself inside a tube with a cage over my face, a pre-warmed blanket over my body and headphones playing 1990s alternative rock over my ears while this machine made random BANG BANG BANGS and BEEP BOOP BEEP BOOPS for 45 minutes and my brain said, “With all the medical advancements we’ve made, no one has found a way to make an MRI machine a little more quiet?” followed by “What if this is ‘a little more quiet?’”
“You’ll get the results in a day or two,” the technician told me, and she was right.
It was perhaps the least shocking thing to hear the voice on the other end of the line tell me that the MRI was completely normal, that the chorda tympia nerve was not inflamed. I have toured the medical community in the Greater St. Louis Area in search of at least one answer to the variety of hellish symptoms Longhaul COVID has delivered to me and, aside from accidentally learning I was dying 53 times an hour every night, well, to paraphrase-quote my primary care physician… “I got nuthin’.”
Hi. My name is John, and I’m a COVID Longhauler. So before we begin, let me set the scene a bit by saying this: Toxic optimism is annoying. Christian toxic optimism is even worse. I have suffered for extended periods of time under more than a few clouds without a lining of any remotely precious…
Despite the lack of an evidence that anything is going wrong with anything inside my face aside from the fact that my brain constantly receives messages of “Someone took a dump in your mouth, son,” the doctor wanted to put me on a regiment of steroids … a high dose of steroids over the course of 18 days with the goal of reducing inflammation in a nerve that the MRI showed wasn’t inflamed.
I balked. I messaged the doctor late Wednesday and said, “Why? Why are we doing this? The side-effects of these steroids seem to suck. Why should I go through that? Why?”
She called me back at 7:27 a.m. Thursday as I was driving to work. I appreciated the prompt attention. We had a long back-and-forth discussion. It was nice to be talked with and not to. It’s not always that way with members of the medical community.
During our initial visit, she told me that we were firmly in the realm of the experimental. There was not playbook for Longhaul COVID, and neither she nor any other doctor she knew had seen my exact symptoms. Further, there was no literature on the topic. Nothing. Zip. Zilch. Nada.
She had seen people with messed-up taste and she had seen people with hearing loss and both are caused by nerve inflammation that was successfully treated with high-dose, short-term steroids so it was possible to extrapolate that what I was experiencing would be alleviated by high-dose, short-term steroids.
“Listen,” she said. “I didn’t really expect to see much on your MRI. That’s not a fail-safe diagnostic tool.” No matter, I thought. I was appreciative of the time to lay down for a bit and spend a few moments with Eddie Vedder in my ears. “Let me tell you the odds.”
The concept of “odds” is great in betting horse races or football games or presidential elections. It sucks when you’re talking about your health.
“When we treat patients with hearing loss with steroids, about a third of them recover completely,” she said. Great. Good start. “About a third have some degree of improvement.” OK. Cool. “And about a third show no improvement at all. So, what do we know about COVID? COVID causes inflammation. Randomly. Everywhere. Hearing loss that is treated by steroids is caused by inflammation. So if you play that out, there is a two-thirds chance that your situation might be improved by steroids.”
So I’m going to take these pills. Six today, tomorrow and Sunday. Five for the three days after that. Four for the three days after that. You get the picture. I might have anxiety, nausea, restlessness, sleeplessness (hello darkness, my old friend), sexual dysfunction, acne blah blah blah. But it’s short term. I’ll be OK. I’m not going to die.
I’m going to take them because, when I asked her what the alternative was, she said there was no alternative, that based on the symptoms I described, this was the thing she would do to address it. And if these steroids don’t work? Let me paraphrase her: “I got nuthin’.”
Which doesn’t mean there’s nuthin’ to be got. Oh no. I’m sure I could go to another doctor who will have another test that will show another set of nuthin’ that we’ll then treat with something else that has some sort of odds of working. Or not.
But I’m tired of all this.
I’m tired of the appointments and forms (the endless freaking forms! Can’t we can come up with one form all medical people can access that has everything important they need to know like my address and Social Security number and emergency contact and drugs of choice, regardless of what provider group it is, so I don’t have to write the same crap over and over and over and over?) and waiting rooms and general hopelessness out there when it comes to Longhaul COVID treatment and the medical community.
So I’ll swallow the pills and keep a Positive Attitude about what they might do.
Who knows? It just might work. And then I’ll have made a contribution to the pool of knowledge used to help others.
Down the hatch…