Of Lavender and Flaming Swords (Book 2 of Our Epic Saga)
They are sleeping beauties for now but we will find a way to wake them up and bring them back to life
I have not seen patients in my office since March 12th, 2020. It sits quiet and empty and sad, The walls are sad. I can tell. I painted them a pale lavender a million years ago when I first opened in Verona. Lavender is calming. I wanted my patients to feel calm and doctor's offices tend to make people nervous. So I painted them a pretty, pale lavender. I covered them in gold stars and hung up pictures and some lines from Sleeping Beauty and a quote from a blog entry I once wrote comparing surviving PANDAS to that fairy tale. I used fairy tales to help me through those years fighting my kids' PANDAS. I called it The Bear and I was determined to hunt it down and kill it. And I did. I tore through its belly with my axe, sewed its stomach full of stones and tossed it in the creek.
But ya know how in a horror movie right when you think the bad guy is dead for good, he somehow manages to come back?
Bear, meet Coronavirus. Reinforcements have arrived.
It started Sunday March 22nd. A week into the Aftertimes and two days before my 41st birthday. Auggie came into my room and woke me up with an awful barking cough. I felt him. He was burning up. And then I realized I was burning up too. It may sound odd, and it definitely sounded odd to people at the time, but I immediately knew it was COVID. It was early, I didn't know anyone with it and no one I knew knew anyone with it. But, I could tell. And when people were shocked I always thought, well it is a pandemic, people, I mean, someone's gotta get it. In fact, a lotta people gotta get it. Otherwise it's not a pandemic.
Over the next few days my other three kids got sick too. At first I was glad to see us all with fevers because it used to be that their immune systems were so misdirected they weren't capable of mounting a fever response. But as days went into weeks went into months, it got old. After a little less than 10 weeks, our fever ended and our other symptoms with it. Auggie and Lena immediately launched into a bad PANS flare. I set them up for IVIG and they ended up having the worst side effects from it I've ever seen them get. They've had a lot of rounds of it at this point in their little lives and they no longer get any side effects, actually. But this IVIG was like the first one all over again. Headache and nausea and vomiting, wailing and gnashing of teeth. It took me off guard. Why was their immune system reacting as though this was their first time getting IVIG? What is this virus, I thought. Did it go after their immune systems directly? Undo all their progress? How smart is it?
Within a couple weeks we were feeling like our old selves. But something kept nagging at me. I would text my friend every now and then and say, I feel like it's still here, still in us. I couldn't completely say why. It was a weird feeling. And every now and then we'd get a random symptom for a day and then it would go and I would say, okay it must have been some other random virus causing it or something we ate. But I'd think and none of us had eaten the same thing that day (yes we have that many specialized diets in our house that its not unusual for us to have all 5 eaten completely different food all day). And it was always all of us on the same day. And even though COVID symptoms cover just about everything, they have a certain feel to them. A low grade fever for twenty minutes here and there. A bout of not quite typical diarrhea.
Looking back on it, we weren't as back to normal as I was telling myself. We were tired. I told myself it was because quarantine life is boring and depressing. Told myself the kids will perk up once they can see their friends again. Told myself single moms running medical practices are supposed to be tired and blah. Thought, maybe I'm just not strong enough to make it as a single mom physician in a pandemic. I had trouble finding words but I told myself I was just being paranoid, that it was normal. I would start hiking and working out again for a week and then crash but I told myself it was just that I was being lazy and needed o get back in the swing of things.
And then on another Sunday, October 4th, six months after the one in March, the fever came back. Not low grade. 102. Me. Auggie, Mies, And eventually Max and Lena too. We went back into full isolation and got tested. I thought that if we had it again, if we were sick and in isolation again for nine weeks, I would lose my mind. The test came back negative a few days later and we entered back into the land of the living. Everyone's fever was gone except Auggie. His lingered a few more days.
Mies and Auggie had been having GI issues that I was fearing might be COVID related. I was about to do a stool study but now I knew it was the COVID. Living in our collective familial gut. And in our brains. Mies had been having cognitive problems since early September and I'd been trying to figure out why. I was tweaking his biomedical autism supplement routine and considering getting.a few tests. He'd also been saying he was really tired but having trouble sleeping at night so I'd been adjusting his medications for sleep and trying to figure out why it was out of whack. Now I knew. It was COVID.
Auggie's daycare teacher told me he wasn't learning anything anymore and couldn't seem to remember long enough to follow the simplest directions. He'd started getting hives for seemingly no reason. COVID.
I now have exhaustion, joint pain, insomnia, brain fog (thats such a cute term for severe cognitive impairment) and some dysautonomia too boot. More importantly, I have a new enemy. Why must these creatures keep picking fights with me? Do I have a rep?
There is no established treatment for post COVID syndrome. There's not even an actual official name for it. So, here we go. I am operating under the theory that this thing works a lot like PANS and treating it as such. I just need to know what to call it. It is not a bear, after all. She is something much trickier than that. She hasn't just stolen away some of our children when we weren't looking. She's put the entire world under her spell. We are all sleeping beauties for now. Until we break the spell of the wicked fay. So here's my plan: I will drive my flaming sword through her throat, make her apologize before she dies, and return to my pretty lavender office. Because lavender is calming, you know. And we will all need a little of that. Once she's dead.