I lost a great doctor
Plus, the Tonic goes paid! And the Antidote #35: spoonie travel, dementia prevention, and pre-"diabeetus"
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).
Wish list shout out!
Many of you sexy birds have chosen to support my efforts here via the Amazon wish list (and now Throne, for those who are loath to support Amazon) in lieu of paid subscriptions. A big Tonic THANK YOU this week goes to whomever sent me birdseed (there was no note)!
You know the spiel: The Tonic is free to read - Amy is so happy you’re here!
So true! But wait…
Friends, after a close review of my various disability benefits guidelines and lots of contemplation, I’ve decided I will be turning on paid subscriptions (and probably also adding a buy me a coffee link, for those who can’t afford a full subscription).
This decision lays somewhere at the nexus of 1) my subscriber numbers growing, so a bigger pool of folks who value my work here and can maybe afford to pay, 2) both my recovery moving along and Baldy’s retirement age creeping ever-closer, thus increasing the need for me to lay down the tracks to making money again, and 3) getting to the place of acknowledging that my labor (of love, but still) is worth a damn (a damn = ability to pay my vet bills).
I have decided that I like the model I see here from other Substackers, where nothing will be paywalled. Sounds a little nutty, right? But my main goal is still to push information out to people who need it, and the people who arguably need it the most are the ones who may be either unemployed or underemployed due to long COVID or ME/CFS. Thus, everything will continue to be free. Paying for a subscription will be something folks can choose to do if they can afford it. Besides, the Substackers I see doing this have still managed to earn decent paid subscriber numbers, simply going off their charms, and a bit of faith and goodwill.
I will likely be turning on paid subscriptions by the end of April, if not sooner. Subscriptions will be $5/month or $50/year to start.
To the 24 of you beauties who have made pledges to pay for my work since I launched in July 2023, I will be reaching out to you individually to make sure that you’re still on board. Once I turn on paid subs, my understanding is that all pledges convert to paid, and you may have forgotten that you once thought The Tonic was worth cash to you. Or your circumstances may have changed. Or, THE TARIFFS. No hard feelings in any event. Be on the lookout for an email from me.
If you’ve got thoughts on this change, I’d welcome them.
But until I make this official…
If you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list or this Throne wish list (for those who are loath to support Amazon). There’s something for every budget and any help is appreciated. Anyone who does gets a 📢 in an upcoming post (be sure to include a note with your gift). Thank you!
Well, nuts.
I lost a great doctor.
The letter came this week, the return address from one of the medical practices I patronize.
I suppose at first, I was relieved it wasn’t a bill.
A quick scan told me the words “retiring from” and my sweet, newish immunologist’s name, and my entire spirit just…deflated.
I can laugh about it now (not really), but at the time, I was devastated.
Finding a doctor who knows anything about long COVID, let alone its shitty gift mast cell activation syndrome (why I was seeing her) is like finding a needle in a haystack if the haystack is a dog pile of every single doctor, anywhere in the world.
Long haulers and “MEeps” (thanks for that clever name, Kira Stoops) know exactly what I’m talking about. These docs are rare breeds. They should be declared extinct and be protected, if our government wasn’t all, “fuck morals and conservationists and endangered species AND long COVID, while we’re at it” (they said “fuck off” to ME/CFS decades ago - Republican AND Democratic administrations).
I found her by accident. My overworked and underpaid infectious disease doc who specializes in ME/CFS and now long COVID, after years of testing my blood and recommending various things, declared my MCAS still not under control and admitted she was at the end of her knowledge base.
The known MCAS experts in my area are private pay - but like, OBSCENELY paid. That was a no-go. So I was just tooling around Google for regular ol’ immunologists when I discovered that Montefiore Einstein had an Advanced Center for Immunology about 25 minutes from my house. That seemed like something.
I began browsing their docs when I came across the lovely Dr. M. While her bio did not list MCAS as a specialty, I noticed that she trained, not all that long ago, at Yale New Haven. My overconsumption-of-all-things-long-COVID brain lit up in several regions. I reasoned that she had to have worked somewhat adjacent to the world-famous immunobiologist, LC researcher, and overall gem of a human Akiko Iwasaki. So famous, she has her own Wikipedia page.
I made an appointment immediately. This was last summer. It was not a long wait until the appointment, which was a surprising relief.
When I met her, she was warm, friendly, and compassionate toward me when taking my LC history. While she didn’t work directly with Iwasaki, she was definitely aware of her from her days at Yale and knew a bit about her work around LC.
In the months since that first meeting, I’d seen Dr. M. three times. The main things she did for me were a) believed and supported me, b) educated me a bit on mast cells and MCAS, c) tested me for hereditary alpha tryptasemia, which came back positive and clued us into why it looked on tests as though my MCAS was raging, but my symptoms were pretty mild, and d) took over management of my MCAS prescriptions (montelukast and hydroxyzine; I also take store-brand, OTC Pepcid).
Beyond a through d, she made me feel seen. She also made me feel like this one particular LC gift was at the very least being managed. She gave me comfort and peace of mind.
Here’s what you often get from doctors when you have one of these spoonie conditions:
dismissiveness, gaslighting, minimization (find a new doc if you can)
believed, but no real knowledge base and no desire to learn more
3. believed, some knowledge base, no creativity/desire to learn more/outside-of-the-box thinking
To be fair, managed care leaves little room for docs to carve time out for learning, and continuing medical education (CME) courses, which are required, cover such a wide range of topics and do not focus much on LC or ME/CFS. However, I’ve found that it’s the docs who put in a little extra time to follow their own curiosity that seem to strike out on their own and become specialists in LC or ME/CFS in their own right.
Aside from that, I’ve had lovely, humble doctors tell me that I know more about LC at this point than they do. While this at least makes me feel valued for my use of Google rather than resented for it, it’s still not a great scene and certainly not what I would prefer (and it’s made downright painful when considering that I got a $50 co-pay zapped from my credit card on the way in; it’s like I’m paying for the privilege of my doctor not knowing what to do for me and then educating them, to boot).
I digress. I was fortunate to have worked with Dr. M. In her, I got:
believed, a decent knowledge base, creativity, support
I did find the language of the letter a bit odd: “retiring from” made it sound like she was going to hit the links or the early bird specials. I can’t swear she was even 40 years old yet. But maybe that’s just semantics. I do wish that docs could tell you where they were moving to so you could follow them. A Google search often takes months to catch up to them, I find.
I at least felt respected to have gotten a letter with the news. In the last few months, I lost my dermatology PA and my primary care doctor. The former I found out about when I got a message saying my annual visit with her this coming December had been rescheduled with a new person. The latter, not until I called to inquire if she was back from parental leave and ready to see patients.
I wasn’t crestfallen about either of those losses. They were nice people, believed me, and were generally sympathetic, but not major players in my care.
Still, it was bad form to find out about their departures the ways that I did. We patients certainly deserve better than that.
The letter included the names of three other allergists/immunologists in the practice. I googled them. None of them are Dr. M. though. It just made me feel defeated all over again.
For now, I’ve decided to go back to having my infectious disease doc prescribe my MCAS meds. Dr. M. didn’t change the prescriptions, so this is not big shift back for me. I figure I’ll avoid unnecessary co-pays as well as the always painful process of telling my whole story to a new doc again. I have to do that in early July with a new PCP, so I’ll save up those storytelling spoons for then.
Friends, I KNOW you have stories for me. Tell me about your doctor losses. Let’s meet up in the comments and commiserate.
And speaking of loss, check out my friend Chimére L. Sweeney’s recent post. So haunting, so relatable…
Lastly, if you’ve got a doc or two who really sees you, send them a handwritten note of thanks this week. I do this periodically. Doctors are human and facing enormous, unprecedented pressures due to all the corporate takeovers. Don’t dismiss this because you think your doc is normally not very emotive. In my experience, they are the ones who might need it most. In any event, every doc I’ve sent one to has mentioned it to me the next time I saw them. They always appreciate being appreciated.
Grieving’s done; now for some links.
The Antidote #31
COVID, Long COVID, and ME/CFS
🤧 Infection susceptibility: COVID-19 may put patients at risk for other infections for at least 1 year.
🦠 What COVID-19 does to the body: seventh edition. And not just what it does to long haulers, people!
😣 Coping with long COVID: ‘Shrinking my world really small’. Preach.
🧑🏻🤝🧑🏼 Two dudes and long COVID: The Doctor, the Biohacker, and the Quest to Treat Their Long Covid. This was a pretty thorough article with a creative format.
✈️ Spoonie travel: Beth with Preparing for Travel You Can’t Avoid (and her follow-up, What I do on the Plane when I have to be on a Plane and I Don't Want to be on the Plane).
😪 Post-Exertional Malaise: a very common feature of long COVID and ME/CFS. Here’s what to know.
🎭 COVID-conscious…Zionist?: M (is) Living with Long Covid with a thought-provoking hot take on why calling yourself this doesn’t work.
🧑🏽❤️🧑🏼 Long COVID caregiving: NiftyKeisha pulls back the shades on how messy and difficult this is. Honest, raw…loved it.
💓 Diagnosing POTS: The tilt table test could be risky for many people with Long COVID.
😵💫 Dysautonomia: the Dysautonomia Dietitian with the third in their very excellent Decoding Dysautonomia series, building a toolkit for recovery.
Webinars/conferences/podcasts/videos/resources
💊 Long COVID treatments: here’s the recording from the RTHM webinar a few weeks back, as well as the list of treatments mentioned during it. Keep in mind, there are no approved treatments yet; these are three LC docs’ best suggestions as to what could work. Dr. Galland (one of the panelists) has been my functional medicine doc for three years, and he might be the most well-read doc out there on LC.
🩸 Menopause webinar: Metabolic Health & Weight Gain, sponsored by Let’s Talk Menopause. April 17th from 1-2pm ET. More info and register here.
✊🏾 Long COVID and Disability Justice: check out Breathing for Justice, a free online event on April 23rd from 10am-3:30pm CT exploring the intersections between LC and Disability Justice. Register here.
🧫 Immune dysfunction: Solve M.E. hosts this webinar, Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID, on April 29th at 6pm ET. Register here.
🎥 Excluded: a helpful explainer on why most people can’t participate in clinical trials. This helped me get over recently being excluded from a Mt. Sinai study for two of their reasons (having had Hashimoto’s prior to long COVID, and being currently treated for EBV reactivation).
🗣️ Looking for a COVID-conscious therapist?: check out this resource directory. Covers the U.S., Canada, and many other countries. (P.S. even if you plan to see a therapist exclusively online, you may want one who understands CC and doesn’t judge).
🚂 Looking for a disability-conscious travel agent?: check out Accessible Escapes with Jenn.
Health miscellany
💉 Shingles vax and Alzheimer’s: maybe you’ve heard about this recent study, showing that being vaxxed for shingles lowers your risks of Alzheimer’s? Here’s Eric Topol’s helpful dive into the study and what it means.
⚖️ Balance: The Best Longevity Habit You're Not Thinking About. (Except I am. After a few falls UP concrete stairs in the last few years, I asked my niece for this balance board for Christmas and I use it a few times a week).
💥 This destructive administration: Trump’s DEI Undoing Undermines Hard-Won Accommodations for Disabled People and We Can't Scroll Past This Dark Hour for Medicine (free MedPage Today account required) and JD Davids @TheCrankyQueer tells us to read and share A Refusal to Abandon HIV Science (link is to JD’s post, which includes link to the main piece therein). Also, Sexual assault prevention division gutted amid HHS layoffs, because OF COURSE the Rapist-in-Chief would gut this program. And, let’s further demoralize Native communities while we’re at it: NIH leaders offered Indian Health Service jobs in Alaska, Montana, Dakotas.
🤦🏻 Trans “regret”: what it means to fund studies about it. Important quote: “Funneling money into "research" to find evidence of a predetermined belief will not result in any actual science, but rather disinformation disguised as science.” A-fucking-men.
🍫 Chocolate recall: Chocolate Bars Recalled Nationwide After Customers Find ‘Small Stones’ in Products. Tony’s Chocolonely! No wonder I find this chocolate hard to chew.
🥚 Liquid egg recall: Cargill Kitchen Solutions Recalls Liquid Egg Products Due to an Unapproved Substance.
🧈 Butter recall: over possible fecal contamination (eww).
🍍 What is pre-diabetes?: Dr. Lucy McBride tells us the answer. Raise your hand if you’re a long hauler who was diagnosed with pre-diabetes? I was, despite eating a healthy diet.
👅 Tongue-scraping: can it really cure bad breath? I do it every night. Very satisfying!
🧑🏻❤️🧑🏾 Dementia and marriage: the institution may not be as protective as once thought (free MedPage Today account required). Balls and chains and marbles…oh my.
🏋🏽♀️ Weekend warriors: fared just as well as regular exercisers, according to this study.
🍷 Red wine vs. white wine: how do they impact cancer risk?
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
📢 Last week’s protest: and what history suggests is next, and excellent post by Samuel James of Banned Histories of Race in America.
😄 Need some feel-good in your life during these end-times? You must subscribe to Anne Kadet, who writes CAFÉ ANNE. She’s a bit of delight in an otherwise heavy Substack inbox.
📚 Confession: I hate audiobooks. I was never entirely sure why, until EJ Johnson crawled into my brain and wrote the most perfect post about it, aptly titled I hate audiobooks. Thanks, EJ!
🦑 Octopi! While snorkeling in the Florida Keys, a marine biologist found an octopus in a discarded beer bottle. They are such smart creatures. If you haven’t seen the documentary My Octopus Teacher, definitely check it out. Bring tissues.
⁉️ Are you a hostile punctuator?? Good article in Time. Totally check it out!!!!
🤦🏻 Buffoons of the week: goes to Fox News, for managing to write about the COVID-19 virus without ever once mentioning it by name because they don’t “believe” in it. Read all about it in: 'Full House' star Dave Coulier was hospitalized with virus that could have killed him amid cancer battle. Gee, I wonder what recent virus causes ground glass opacities in the lungs and is dangerous for cancer patients with compromised immune systems to catch?! I guess we’ll never know.
🏆 Winner of the week: you know we love us some Simone Biles here at The Tonic. But we also love her protégé, Jordan Chiles, our winner of the week for bouncing back from Olympic medal fuckery to lead UCLA gymnastics to the NCAA championships. Never count her out. Not only is she crazy-talented, but she’s spunky as heck.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. No pics this week, just lynx (get it?)
DON’T FEED CATS RAW FOOD: Bird flu infections have been mounting in cats.
Darwin’s Cats: Cat owners asked to share pets’ quirks for genetic study.
Stray cat strut: He Turned His Garage Into a Cat Hotel But Other Creatures Noticed Too. You simply must see the video in that article - too cute.
A cat for guide dogs? Guide dog kennel cat rules the roost.
Fellow tongue scraper lmao
Thanks for the shout-out Amy, and congrats on turning on the paids!!