Screenshot: Patient Portal
Today is officially six full months since I first got COVID. I haven’t posted here since day 101 of this journey. I am really sorry that my blog has turned into nothing but #LongCovid updates, but I just am doing everything I can to get through my projects and meetings with work, and blogging is extra. All the tech goodies will come back, some day. I’m still collecting them!
My doctors all insist that I had COVID and that we just missed the window of opportunity for testing. I get messages from my primary care doctor with the subject line: “COVID Long Hauler.” That’s actually pretty validating. This has been a long, loooong roller coaster ride, getting better, crashing, starting over. Currently, the best guess we have is viral post-COVID dysautonomia, and this is functioning as diagnosis for the purpose of requesting therapy. My doc did some research, talked with other docs, and had some good ideas. Insurance won’t cover them all, so I’m starting with what insurance will cover: physical therapy.
The past week has been better than I’ve been in a long time. I had 3-4 days where I was able to work, make food, and actually do a tiny bit of household chores. Then, of course, there were 3-4 days where I had a crash, but was able to crash and get back up, even if I wasn’t able to do everything I wanted to get done. But just two weeks ago … well, this is my Facebook post from then.
AUGUST 30, 2020 (Day 170)
DS: Are you SURE you don’t have COVID anymore?
Me: I test negative.
DS: I know. But are you SURE you don’t have it right now? Are you SURE sure?
I’m guessing that some of my friends here probably have dysautonomia, but I’m new to this. It’s part of whatever COVID did to my body, and evidently most of what I’ve been thinking of as relapses has actually been this new damage to my body asserting itself, in unpredictable ways, at unpredictable times. Sometimes my heart goes too slow, sometimes too fast. Sometimes I can’t catch my breath, but my oxygenation levels are fine. Sometimes my oxygenation levels are not so great, but I feel fine. Sometimes I feel like I have a fever, sometimes I chill. My balance is rotten. Sometimes I have a sense of pressure in my head, usually (but not always) with brain fog or headache. When I tried going to the grocery store on the bus with my son a couple weeks back, the pressure in my head lasted for a week and a half. Don’t worry, they’ve done tests, everything seems normal. They don’t know what’s causing it, but that sense of pressure in your head is reported by a lot of the COVID long haulers. So, normal for us, I guess. Yay?
This morning, my hands were shaking so bad I couldn’t type. When it kept going on, I decided to walk the dog with my son. I made it about an eighth of a block before my lack of balance made it clear that walking was going to be a challenge today. I don’t know how I’ll ever get better if I can’t walk, tho, so I held onto my son’s arm, and kept going. When we got home, my son ordered me to the couch, and I laid down.
After about a half hour I started chilling, and this was chilling like when the COVID was bad. I knew the temp outside was in the 70s, and I was on the couch by an open window. It wasn’t that cold. I finally asked my son to help me cover up. He came over and checked how I felt, temperature-wise. He says my hands were like ice. They were so cold it scared him. That’s why he was asking if I was sick again.
He covered me up with two blankets. Folded them double. At my request, added another. At my further request, he added two more over my chest. I ended up with six layers over my legs, and eight over my chest and arms. After an hour, I felt warm-ish to me, normal to him. He felt blazing hot to me, which is … the usual 98.6, you know?
I had a lot of plans for things I was going to get done this weekend.
Emerging Technologies Librarian 