95%: a big whoop
Plus, the Antidote #43: ME/CFS genetics study, health promoting behaviors, and overcoming life's waves
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.
If you are new here and curious about the tools that have been helping me in my long COVID recovery, please check out the Recovery Tools series tab on my Substack site. (Please start with part one, as it includes an important disclaimer about how highly individualized recovery tools can be with a heterogenous illness like long COVID).
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Thank you for the feedback
Several of you responded to the request in my last post So…what brings you here? by letting me know…well, what brings you here. Most of you dabble in the links and many of you said you enjoyed hearing my updates, about recovery or otherwise, or just enjoyed the humor I try to bring. This was really helpful; it basically let me know to stop overthinking the content here.
One of you specifically said you are now also here for updates on ODR (Operation Domesticate Ripley - our feral garage kitty we’re working hard to bring inside with the privileged pair). That also made me smile. Progress is slow, but this girl keeps charming us with her sweet meow.
We recently went away for about a week to visit my in-laws, and our good-for-very-little cat sitter didn’t engage with Ripley much at all (oh, and she also didn’t change the water in her bowl - I KNOW! She will not be asked back). Baldy has a Ripley-cam in the garage, and while we were away, he could see that without our interactions with her throughout the day, she was going in her little hut as early as late afternoon and staying there all night. We both surmised that she was feeling blue without us around, and that made us a bit sad.
But the day she realized we were back, she followed Baldy all around the yard as he did his morning rounds, and she meowed up to us in the house for much of the morning. She still won’t let us pet her or and she doesn’t come into the basement much; we think she just wants us to hang around with her outside all day. <Sigh>…for now though, all is right with our little homestead again.
August had me rolling
For the past two summers, I have been more focused on planning a bunch of fun events or outings that, by summer’s end, will make me feel like I made the most of the season within my spoonage. This summer threw me two curveballs - the first was the terrible cold I had in late June/early July that forced me to miss outdoor Shakespeare.
I stayed calm through the illness and rested a lot and was grateful to have fully recovered within a few weeks. (I did not, as many in CFS Recovery said I would, “level up” in my recovery after the cold. Apparently, that’s a thing that can happen. All I wanted was to get back to my pre-cold baseline, and that’s what happened).
The second curveball was even more of a doozy than the first. It went like this: during the second-worst day of the aforementioned cold, I had an appointment scheduled with a new primary care physician and after calling their office, I was advised that although I was sick, I should wear a mask and keep the appointment, since new patient slots are hard to come by. I also took my second at-home COVID test before the appointment, which was negative. I did not want to be responsible for giving my new doc the covids.
I had a good visit and really liked the new doctor; she was warm, funny, smart, and treated me like a partner in my own healthcare. This largely involved her turning her screen toward me and sitting next to me while we discussed the myriad of meds I’m on, most of which are long COVID-adjacent.
One of these meds is hydroxyzine, prescribed to me three years ago by my then functional medicine doc. It has been part of my MCAS (mast cell activation syndrome) arsenal. I had mentioned to my new doc that I wanted to start coming off of some of these meds now that I am pretty close to fully recovered. She agreed this was a worthwhile endeavor and felt strongly that hydroxyzine be the first one I come off of, since she said some studies indicated that it could contribute to dementia if an older person stays on it too long. She explained it is not meant to be something that one is on for more than a short time, and certainly three years was way longer than that. (I didn’t ask her if I was now considered an “older person” at 50. All I know is that if I hadn’t married a Baldy that’s 14 years older than me and thus become eligible for AARP membership at age 36, I would now at 50 be eligible on my own).
Being firmly planted in the “I’d love to skip right over dementia, please and thank you” category, I agreed that I wanted off of this med. I asked her if this was a med I needed to titrate down from, and she sort of nonchalantly said, “yeah, you could cut them in half for a bit.” I took her vagueness and nonchalance as a signal that getting off this drug was, in medical terms, no big whoop.
On the drive away from the doc, I was also feeling disappointed that my functional medicine doctor never told me I shouldn’t be on hydroxyzine for so long (and in fact, his office kept sending in refills). He prescribed it for the dual purpose of MCAS management and sleep enhancement. I think this is a big problem in modern medicine - even quality, well-meaning doctors aren’t keeping their eye on medication management the way they should. And I trusted him and never looked further into it. I should probably have known better, but you know.
Back to me cutting pills. I took half a 25mg hydroxyzine each night and felt a little bit itchy, but that was all. After two weeks of that and in line with the “no big whoop” theory, I thought, “that’s probably good enough,” and I stopped taking the half pills entirely.
Big whoop…big, big whoop
Within two days, the dumpster fire of virtually every major long COVID symptom came raging back. Intractable fatigue, buzzing/tingling neuropathy, brain fog so severe that I literally thought maybe I had had a stroke. Oh, and the ITCHING. By the third or fourth day, I was on the couch in a state of constantly scalp scratching and periodically scratching elsewhere. It was intensely uncomfortable, though I had read online to expect this, since stopping hydroxyzine causes the body to start releasing histamines again.
It was the long COVID stuff I couldn’t really bear. It felt like all of my recovery gains were gone in an instant. I was grateful to be in CFS Recovery during this shitshow, since I posted something in the community asking for guidance/support, and so many told me that I had not gone back to square one and that quite possibly I needed to have titrated down more slowly. Thank goodness for these people, because I really calmed down a lot after reading their comments.
Several messages to new doc in the patient portal and a visit to a new allergist later, and I was back on track. I went back on the half pills and resolved to stay at that dose for at least a full month, before I will attempt to cut the halves into quarters and stay there for at least a month too.
Within two days being back on the half pills, my long COVID symptoms began dissipating. Thank goodness, because the last two weeks of August held some of my most anticipated summer-fun plans.
I drove myself 2.5 hours each way to visit my college bestie, her family, and another of our college friends. I got to spend time with my bestie’s grown kids who I adore, including her youngest who is my godson (and who recently left for college at - get this - our alma mater! Where he’ll play on the volleyball team, like we did when we were there). I even played pickleball twice when I was there. We had a blast! And I did just fine.
And then a few days later, Baldy and I left to head to South Carolina to visit my in-laws. This trip was a very big deal to me, since the last time I was able to travel there for a visit was April 2022. Not seeing your beloved in-laws for 3.5 years when they’re in their 80’s is a big bummer. My MIL and I cried when we first hugged again and then yet again when we left.
The trip was great. I handled the very long car rides to and from quite well. We went for walks each morning, spent time at the beach, did a little shopping, ate out each night (with cocktails!), and played cards into the night. I had zero symptoms the entire time - no unusual fatigue, no neuropathy, no brain fog. No heat intolerance issues (and it is SO g.d. humid down there). No dysregulated nervous system from all the stimulation (loud TV, music in the background at restaurants, constant conversation, bickering in-laws (hey, they’ve been married for 65 years!)).
I’ve been saying that I am about 90% recovered these days, though that’s hard to pin down obviously. Did I always feel 100% even in the “before times”? Surely not. But this trip and the lack of any kind of blowback from the long car ride, the heat, and all the activity have me feeling like I might actually be closer to 95%. I’m almost afraid to say that out loud!
Yesterday morning, I had a 90-day check-in call with a coach in CFS Recovery (though I’ve actually been in the program over 120 days). Coach Jon is one of the newer coaches and thus he has reached full recovery more recently than some of the other coaches. (Here’s a link to his interview earlier this year with Raelan Agle).
My conversation with him was enormously helpful, as I asked him so many questions about being this far along in recovery and if it was really real. He told me our minds think we are fully recovered before our bodies do, and so while we feel we are pretty much there, our body may throw some lingering symptoms our way. It’s our nervous system’s way of just poking you toward the end and saying, “are you really going to keep listening to us now? Take the breaks you need? Stop zooming through life in a dysregulated way? Will you, will you??”
After feeling great on these last two trips I took and having this reassuring conversation with Coach Jon, I feel I am mostly there. The 95% holds up. What was also helpful is that he said full recovery is not some finish line we cross where balloons and confetti drop down and a marching band comes through.
He said that I should get the 100% number out of my mind, that it’s more like you return to living your life fully and eventually the remaining symptoms just fade away, in some cases without you even noticing.
This day is coming for me. I’m ready for it.
COVID, Long COVID, and ME/CFS
🧬 Big ME/CFS genetics study: a 15k person study that points unequivocally to ME/CFS genetic ‘signals’, providing validation for patients and researchers worldwide. Here’s a second article on it from Science, since this was big news. (See below for a Jarred Younger video describing the outcomes of this study, if videos are more your jam).
🫸🏼 Social distancing: six feet ain’t gonna cut it, according to this study.
👩🏻⚕️ Manual for docs: the Cohen Center for Recovery from Complex Chronic Illness (CoRE) at the Icahn School of Medicine at Mount Sinai created this provider manual on infection-associated chronic illnesses.
😵💫 The advocates are TIRED: Helen, who writes Live, Laugh, Long Covid, with this spot-on post Advocacy: The World’s Worst Wellness Plan.
💉 Vaccine update: Ryan McCormick, M.D. breaks down the dumbfounding and perplexing COVID-19 vaccine recommendations and availability. Also, here’s a Politico piece on how the fall trip to the pharmacy for a Covid shot may be strewn with obstacles.
🩸 COVID and vascular aging: Eric Topol gives us the goods in his post COVID and Our Arteries. P.S. this if for anyone who has had COVID, not just long COVID.
🤔 Defining long COVID: Differing Definitions of Long COVID Cloud True Prevalence (free MedPage Today account required).
🤧 Kids and COVID-19: rhinovirus infection may actually lower kids’ risk of getting a COVID infection (free MedPage Today account required).
😣 New fibromyalgia treatment: Tonmya is FDA Approved to Treat Fibromyalgia: CEO Seth Lederman Talks.
Webinars/conferences/podcasts/videos/resources
👩🏼💻 SSDI webinar: a recording of the recent webinar by Pandemic Patients. Fun fact: a webinar on applying for disability gave me useful strategies that helped me win my disability appeals.
🧘🏻 Taking charge of stress: if you don’t already subscribe to Mardi Crane-Godreau, PhD’s Substack, get over there, stat. She’s an expert in so many things (including long COVID recovery) and her posts are a fantastic source of accessible information. In this post about stress, she shares a short video she recently worked on.
🧬 Genetics study: here’s Jarred Younger’s video explainer of the aforementioned ME/CFS genetics study.
Health miscellany
🍴 Famine in Gaza: What does it take to make this pronouncement? I also listened to a podcast panelist talk about this and I learned that it actually takes quite a lot to declare this. And, it’s a war crime in this case. Also, here’s an eye-opening piece on how the U.S. is quite okay with starving children, both here and abroad.
💩 Race as biology BS: an opinion piece on the fallacy by a physician who says that race-based medical practices often worsen outcomes for the people they're meant to protect (free MedPage Today account required).
❤️🩹 Health promoting behaviors: another gem by Ryan McCormick, M.D. - his top 100 list of things we can do to help improve our health outcomes.
🍸 Alcohol: speaking of health promoting behaviors, US alcohol consumption at record low as health concerns rise, survey finds.
🚶🏽♂️ 10,000 steps debunked: Menopause Nutrition with a great post on how many steps you actually need to support your health.
🏳️⚧️ Trans folks: How Many Adults and Youth Identify as Transgender in the United States? Trans care is healthcare, period. That’s why this link is here.
💪🏾 High-protein snacks: worth the hype? I do admit I’ve fallen prey to this situation (is it a craze? I dunno).
🤬 Government fuckery: this subcategory isn’t going anywhere anytime soon, it seems. RFK Jr. is getting personal authority over who to kick off medicaid and the hidden costs of cutting Medicaid and looming Medicaid cuts could hurt Black children, advocates warn. Oh, and drowning prevention program comes to a halt at the CDC. And this week in voter disenfranchisement, Trump’s promise to end vote-by-mail is yet another attack on disabled voters. And we’ll just keep shitting on those who serve our country with veterans could lose work requirement exemption under 'big, beautiful' spending law. Oh, and with climate change worsening, FEMA staffers accuse Trump of weakening disaster programs.
😶🌫️ Preventing dementia: even if it runs in your family.
🦠 The gut: and its role in histamine intolerance and MCAS (mast cell activation syndrome).
🧪 Preventive tests: try this when your doctor says ‘yes’ but insurance says ‘no’
🩸 Menopause: an opinion piece on why it’s not a disability and why this sets a dangerous precedent (free MedPage Today account required).
🪲 Invasive ticks: scientists warn of invasive long-horned tick carrying debilitating Ehrlichiosis infection.
🤓 Bye bye, bifocals?: new eye drops can fix farsightedness. I’d love to save money by not having to buy progressive lenses anymore!
Inspiration & Recovery
🌹 The rose that survived Hurricane Katrina: an inspiring lesson in resilience!
🦸🏽♀️ Sleeping superhero: Man Wearing Batman Pajamas Leaps from Bed to Detain Burglary Suspect. Choose your nightwear wisely!
🌊 Overcoming Life’s Waves: how to keep going when challenges hit, by Dr. Eleanor Stein (a longtime ME/CFS doc who herself recovered from the illness recently after 33 years).
📚 Put down your phone and read a book.
💪🏾 Also, the recent launch of the National Association of Black Bookstores.
🍫 Why chocolate tastes so good: microbes that fine-tune its flavor.
🐻 Bear makes surprise appearance at California ice cream shop. Chooses strawberry. I approve!
💔 Welcome to the 'menodivorce': Why women aren't sweating marriage in a sea of hot flashes. (Don’t worry, Baldy; I’m in it to win it). Loved this line though:
“Life is too long. Not too short. I’ve got time left in me and I don’t want to spend it with someone that I don’t respect who doesn’t love me.”
🤯 121 random fun facts that will blow your mind. Most fun: Laughing came before language. Least fun: Chainsaws were first invented for childbirth.
🏙️ This New York skyscraper had a 1-in-16 chance of collapse. Only one man knew. At once terrifying and fascinating.
🤦🏻 Buffoons of the week: RFK, Jr. and Pete Hegseth faced off in a ridiculous fitness challenge that neither of them achieved. Of course, this Fox News link called it “impressive.” So I guess we really have three buffoons this week.
🏆 Winner of the week: 10-year-old prodigy Bodhana Sivanandan became the youngest female to defeat a chess grandmaster. I just love how utterly bored she looks here as she’s whipping old white men’s asses.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Fritzy goes outside edition. A few links first:
Stray Kitten Wanders Into Packed N.Y.C. Subway Car in Viral Clip and Finds a Mom in the Crowd. A little calico! Click on the link to see the video.
Are Scented Candles Safe around Your Cat? I’ve all but stopped burning them here. Turns out they’re not great for us, either.
I’ve been dabbling in harnessing Fritzy and taking him out on the deck for some fresh air. He has been loving it (see him patiently waiting for me to get out of the bathroom on top left).
At first, he had no idea how to walk with a leash, so all he would do is plop down (like he is here on the top right). But over a few months, he got the hang of the leash. We decided to treat him and Birdie with flea/tick meds so I could take him on the grass, which he was dying to do. That finally happened this week.
BUT, about five minutes after the bottom right pic, something freaked him out (I think it was Baldy), and he houdinied his was right out of the harness. And then when I tried to grab him, he hissed at me and ran into the flower bed against the house. I was so freaked out at the idea of him running off for real, that it made me panicky at first. Then I realized he was responding to my panic. So I sat in the grass and spoke sweet words to him. Baldy got me a towel so when I did grab him, I could hold him tight and protect my skin. And eventually, I sweet talked him into a rescue grab. PHEW!
Yesterday I ordered the Houdini™️Escape-Proof Cat harness from Amazon. Most cats in the reviews have not escaped from this, though a few have. I guess we’ll see what happens.
Reading that you are 95% recovered brought tears to my eyes! I am so beyond happy for you!!!! I said “nooooooooo” out loud when I read you just stopped taking the second half of the hydroxyzine instead of quarter down haha, but I’m so glad you had the supports to get things back on track to tapper down and the symptoms dissipated. Yay to the trip and that you handled the entire experience without any negative effects! I wish we lived closer because everyone in our orbit calls my wife the cat whisperer. She takes excellent care of many a cats when friends go away. Not leaving water or engaging with the baby outside is unacceptable!
I really like how coach Jon said to not focus on the 100% number and just live your life—I agree that when you focus less on this imaginary arbitrary number, symptoms will gradually improve. Love the Simpson’s meme backing into the bush to visualize this 😂 I’ve definitely tried to put a number on my progress too and this has made me reframe how I see recovery!
When you said there’s no finish line with balloons when you hit 100% it kind of reminded me of a phrase my friend says that ‘life is not a Disney movie.’ There are times in life that may not look like a movie perfect moment but they are still beautiful!