The Antidote #16: mask ban update, viral persistence, and chronic Lyme
Plus, my disability hearing, racism abounds, and yay for gay! (marriage)
Welcome to The Antidote, the biweekly roundup post from The Tonic that is filled to the brim with goodies.
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
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My government disability (SSDI) hearing
Last week I wrote about my upcoming disability hearing, which was this past Monday. It went (I think) very well, except that it started 30 minutes late and then it lasted an hour, and that’s a long time for me to be on edge and then “on.” The social security staff as well as the judge were both very apologetic about being late, which was frankly refreshing coming from a government organization.
Also refreshing: the judge was very pleasant and respectful. He asked me many questions about my work history, the types of responsibilities I had, what my illness was like in the beginning and then now, and what happened in the past when I tried working through all the symptoms. He also asked me about my physical and cognitive limitations. I was sure to give very specific examples of what I can and can’t do, as my attorney advised me to do - things like, “it’s hard for me most days to bend down to scoop the litter box because my heart races and I get dizzy,” and “I do curbside grocery pickup; I tried shopping on my own one week about two months ago and I crashed for days after.” My attorney then was able to ask me questions and she asked things she felt he missed as far as my limitations. All good.
Toward the end, when my testimony was done, he then asked the vocational specialist if there were at least three jobs in the national economy that I could perform, based on the (extensive) evidence in my file and on my testimony. She told him there were only two, but then she asked for a moment because she needed to look up something about one of those jobs. When she came back, she said, “I’m sorry, your honor - there’s only one. Surveillance systems coordinator.”
Mind you, I have no idea what that is - maybe someone who sits and watches security cameras to detect threats?
The judge revised the characterization of my limitations and she said a claimant with those limitations would still be able to do this job. Then my attorney asked the vocational specialist if there were any jobs in the national economy that would allow a claimant to lay down to rest 2-3 times a day, as I stated I needed in my testimony. The answer was no - no jobs specifically allow this. So the number of jobs I would be able to do in the national economy:
(Mind you, my last boss was incredibly accommodating and allowed me to work from home and lay down whenever I needed to. But my health still got worse, because the cognitive effort, stress, and physical demands of the job were all more than I could manage even with flat rest).
And that was the end. The judge thanked me for my time, said he’d issue a ruling within 30 days, and wished for my healing. Very nice. My attorney called me right after the hearing ended and said she thought it went very well and that she’s almost certain he’ll award me the benefits, though she has seen judges hang their hat on that one job (out of a data bank of 3800 jobs) that the vocational specialist said a claimant like me could do. So we shall see.
For the rest of the day after the hearing, my brain was in a scramble. It’s like the stress and concentration required of me, and the length of the hearing, was all too much and my cognition was glitchy. I went outside to walk in my driveway a bit and left my keys on the stone wall…overnight 🤦🏻♀️. Baldy found them there in the morning when he left for work. It’s a good thing no one stole my car or (gasp!) our cats. The crazy thing is, as soon as I placed the keys on that wall, I said to myself, “your brain is so fried right now that are going to forget these here.” And sure enough. I never, ever did things like this in the before times. Thank you, COVID.
Methinks it’s time for links.
COVID, Long COVID, and ME/CFS
😷 If you read last week’s post, you know that North Carolina was trying to pass a fascist mask ban that would have included folks masking for medical purposes. This week the House put a pause on it to try to negotiate revisions that would not penalize these folks for protecting themselves or their loved ones. And here’s another piece about doctors in NC railing against the ban. Stay tuned…
🦠 There’s been a lot of talk of viral persistence in long COVID. This article discusses the latest research on that (which found COVID fragments in up to 25% of the samples it tested from folks who had COVID). Note: free MedPage Today account required to read article.
☠️ COVID Still Deadlier Than the Flu -- But the Gap Is Narrowing
🩸 I have long been wondering if I should avoid donating blood while I have Long COVID. Great reporting here by The Sick Times tells me for now I probably should avoid it: Should people with Long Covid be donating blood?
📚 And while we’re on The Sick Times, I’m so appreciative that they included The Long COVID Reader on their list of ten new books about Long Covid, chronic illness, and disability, and that they specifically shouted me out as one of the contributors. If you haven’t picked up your copy of this very compelling, humanizing anthology of life with Long COVID (I know I’m biased, but I read the whole thing and every essay/poem is beautifully written), you can go here or here.
🤒 Have you been reading my newsletter and wondering what ME/CFS is? Here’s a great Instagram post by Long COVID Justice that lays it out. No need to be on Instagram to view it:
♿ How to Weigh the Risks of Disclosing a Disability focuses primarily on Long COVID, but could be about any condition. (And stay tuned for more on this by Substacker
of ).📰 Check out this post with many great links by
. There are especially great “receipts” on the efficacy of masking:
❤️🩹 And here’s
, a new Substacker on the scene sharing her own Long COVID recovery info. She and I have vowed to compare notes:
Webinars/conferences/podcasts/videos
👩🏾⚕️ The Racist and Capitalist Failure in Our Unity. Boosting this here, written by my friend Chimére Smith, about the unacceptable lack of Black representation among the researchers, doctors, or patients invited to be a part of the recent Unite the Fight global conference on Long COVID (despite the conference’s mission to create an “inclusive” space). The responses she got from the conference organizers fell very short. Take a read.
🧘🏽 Join my favorite yoga teacher, Shannon Williams of Nourish Therapeutic Yoga, as she gives a “very modified movement class” on May 30th at 2pm EST. Sponsored by #MEAction and totally free. If you’ve been wanting to check Shannon out, now’s the time. Register here.
🕊️ Madelleine Müller of
with a beautiful meditation for nourishing your heart.Health miscellany
🦌 Long COVID awareness and research is drawing some much-needed attention to conditions like chronic Lyme. Read all about it in Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment.
🌈 And this week in DUH…20 Years of Same-Sex Marriage Has Been a Boon to Health.
⭕ In Seeing Myself as a Whole, Angie Ebba writes about how her mind and body are one, and thus the medical system dissecting us into parts does us a great disservice.
💊 More on the potential benefits of metformin: A cheap drug may slow down aging. A study will determine if it works.
🫁 In case anyone out there still doesn’t understand that racism is still baked into our health policies, research, and medical care: Removing race adjustment from lung test could mean higher disability payments for Black vets.
🤕 Are migraines getting worse? There are no upsides to climate change.
👁️ Here’s
again on the first time she felt cared for in the medical sense (hint: it was only recently). Teri’s a hoot and a helluva writer:
💊 Two years into my Long COVID, I was found to be pre-diabetic; a few months after that, I had high cholesterol and LDL. Neither of these were diet-related, but a phenomenon that my infectious disease doc said was happening to long haulers a few years out from their COVID infections. Wacky shit. Anyway,
here with an excellent piece on statins and diabetes risk. He answered many questions I didn’t even know I had:
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
⚾ MLB to address uniforms after player complaints. You Seinfeld fans out there will know where I’m going with this one 🤣😂 (can’t embed, so clickety click here: The Cotton Uniforms - Seinfeld - YouTube).
🤓 RIP Daniel Dennett, philosopher and one of the “four horsemen” of new atheism.
🏃🏻♂️ This man broke the Guinness World Record for running the fastest marathon dressed as a scientist (in full PPE). Sounds…hot and gross.
🚗 Sure am glad I drive a Subaru (although I do miss my Hyundai Santa Fe): Kia and Hyundai Top 2023's Most Stolen Vehicles List.
🤦🏻 Buffoon of the week: this woman, who decided to climb into the overhead bin on a Southwest Airline flight for a nap. Why does it seem like Southwest is home to some of the dumbest air travel shit to ever happen?? Here’s the latest of several SNL skits about the airline.
🏆 Winner of the week: It’s Dorothy Jean Tillman II, who just completed her doctoral degree in integrated behavioral health at age 17. I’m sorry - Dr. Tillman. What an incredible accomplishment. (I just hope she had enough of a childhood?)
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Fritzy sleeps edition.
I’m glad you persisted through the disability hearing-sending good vibes for a positive outcome. Love and miss you!! 🥰
There’s so much good information in this post, Amy. I was very interested to hear about your SSDI hearing - I’m sure you were a great advocate for yourself! I was also interested in the info about Metformin and the statin/diabetes article. My doctor recently added Ozempic to treat my diabetes, while still continuing the Metformin. So far, my A1C has gone down and I’ve lost a few pounds. We’ll see how it goes. Looking forward to your next post! 😊