Insults on Injuries: on why we don't always know what's what or why and why we shouldn't need to in order to survive
From 2021 sh*tshow to 2025 extraction, was it C19 or the vax that broke my ankle and/or gave me Long COVID? And why should that even matter?
PLEASE before you read or share this, if you can please donate to fight the PURPOSEFUL, US-SUPPORTED FAMINE and GENOCIDE IN GAZA: here is one way to do so:
Thank you. please keep fighting.
)))))((((((((
some of you have heard this story.
and now more of you will.
feels like a no-caps for starting sentences kind of story. as if I am just a speck in the mote of capitalism’s eye or the eyes of fate if fate has eyes.
anyway… it’s about C19, both acute and long C, and it’s about vaccines and it’s about care and fate and luck and lack of it and privilege and struggle. which is to say, COMPLEXITY.
I thought of it because of this important article about vaccine-related LC or whatever you want to call it, they call it “Post-COVID Vaccine Syndrome”, that The Sick Times just put out,. and it reminded me that I don’t really know if I have LC and/or vax triggered chronic woes…
…. and also because today I got outpatient surgery to get the metal hardware out of my ankle I broke in Feb 2021, during my second run-in with C19 which is the one that led to the most chronic impacts. and that 2021 experience was why I can’t tell if I have LC and/or vax injury.
(the metal was aching inside me last winter and off and one in other seasons, and C rates are pretty low right now so felt like a good time to get this done before the healthcare system potentially collapses and it either becomes impossible or dangerous or complicated.)
anyway here’s the tale:
Insults on Injuries
when the C vaccines were just coming out in early 2021, I righteously said “o no I can wait, I just stay at home and my kid’s in remote school and my nesting partner aka my health-insurance-spouse is a remote teacher, let others get it who are out working and at higher risk…” but let me be honest, I got caught up in the fear and also the reality of having a bunch of chronic illnesses and having dodged the bullet with my first C infection in March 2020 that seemingly resolved fully after about 6 wks but that I knew could come into my household again despite precautions…
… so like so many of my white-people-of-privilege I refreshed refreshed refreshed on the NYC vax registration page and got a slot for a time when my kid would be with her co-parent in late Fed or mid March 2021 as I figured I’d have side effects/need time to recover. and then there was an earlier slot that I found on one day’s notice for Tues Feb 23 - here it is on my google calendar:
as you can see, right after that appointment, I was supposed to be in a discussion for the much-ignored, but really pretty damn good Chronic Injustice report I coordinated/wrote… but I’m guessing I pushed it back because by the time I was driving home from the vax location — which was in a makeshift storefront combo testing site/vax site/urgent care about an hour drive away — I was already starting to have side effects.
(I also later got a speeding ticket from the trip home from a camera, which felt like literal insult upon literal injury, read on…)
so I came home and felt sicker and sicker, and overnight had what people talked about as a temporary jaunt to hell as far as feeling realllyyy bad all night and then woke up and the hell broke or maybe it was just a fever and I felt ok.
but the next night as I was going to bed I felt queasy woozy. I went to sleep and woke up around 2:30 am feeling REALLY queasy woozy, we’re now taking 36 hours or so post-vax.
I got out of bed and walked up the relatively long-for-NYC hallway to the kitchen to get an ondansetron pill which is the miracle drug of my life that kills queasiness before it kills me.
and then as I was walking down the hallway back to bed the hallway started pitching and shifting like I was on the deck of a ship in roiling waters, I bounced side to side, hitting the walls and and and the next thing I knew I woke up 6 feet further down the hallway in terrible pain, and my right ankle was already swelling like there was a spare tire around it, a spare tire made of pain…
I screamed for my partner, help help help, and they raced out of bed and helped me somehow get back to bed, and that was the first time in this episode that we called the EMTs and they came and looked at it and said IT’S PROBABLY JUST A SPRAIN and if it’s still bad in the morning go get an x-ray. They actually said that given the size of the hallway and the angle I would have fallen there was no way I could have broken my ankle. geometrical analysis or whatnot. no.
and maybe I got some sleep? if I didn’t move at all it somehow didn’t hurt at all so maybe that’s what happened.
the next day I texted a picture to my heroic provider Zil Goldstein and she said THAT LOOKS BROKEN and I was like ok I better go get X-rays but how the hell do I do that? I am on the second floor of apartment and I can’t walk and I tried to scoot down the stairs on my ass but it was too scary/hurt too much so I called the EMTs again.
they came back and said IT’S PROBABLY JUST A SPRAIN BUT WE WILL TAKE YOU TO HOSPITAL and they took me to NYU Brooklyn to the ER. when I got to the ER the intake nurse said IT’S PROBABLY JUST A SPRAIN but she put me in a bed next to a very elderly and delirious man who could not wear a mask.
the nurse who came by during the first shift said “I didn’t get the vaccine I don’t think it’s safe, but it’s ok because this side of the ER is not the C19 side, that’s the other side behind that wall” and I thought to myself wow that’s bananaz because you didn’t test me, how would you know if I have C or not, or for that matter, this guy or you, but I was pretty fucking out of it and I didn’t say anything. but seriously, what the fuck.
and I also saw a young woman in terrible pain on a gurney and the dr lecturing her saying I told you last time you can never use weed again, every time you are going to have this awful vomiting and pain and that’s how I learned about Cannabinoid Hyperemesis Syndrome that still no one is really talking about but now I think I have a very very mild version of it: a year ago or so I started doing nightly edibles because the Fitbit I got from the RECOVER Initiative showed I got more deep sleep when I was high, but then I was queasy every day and had to take that miracle drug ondansetron or I would throw up — but more about that in another post (soon I hope!)
I was waiting and waiting and waiting for the x-rays that everyone told me was going to show IT’S JUST A SPRAIN and finally in hour 9 or so these young guys came over and said IT LOOKS LIKE A SPRAIN and finally took me for an X-ray.
and then immediately it was like YOU HAVE A BADLY BROKEN ANKLE and YOU ARE GOING TO NEED SURGERY and YOU NEED TO GET THIS MORPHINE INFUSION NOW BECAUSE WE ARE GOING TO FORCE YOUR LEG BACK TOGETHER IN A CAST AND IT’S GOING TO HURT LIKE HELL and then finally my friend Drew got to take me home, thank goodness he is a night owl.
by this time it is Friday so I spent the weekend somehow passing the time, I have no fucking idea, and first thing in the morning I called Hospital for Special Surgery (HSS) because it’s NYC and I have pretty damn good city worker insurance and so does/did Kelli Dunham and if she went there for knee surgery and recommends it that’s definitely where I’m going for broken ankle and they said COME IN TOMORROW so I did.
meanwhile how am I getting to this place which is 25 min away in car if there’s no traffic which there never is, so it’s usually an hour and I can’t walk? mind you it is March 2021 and I’m this super isolating illder and don’t know what to do and am afraid of everything. so I put out word to queers online and some very nice transmasc person gave me a ride once and Drew did again too, he is my neighbor and saves my ass many times in many ways, and sometimes I just used car service which was a lot of $$.
I met with the ankle surgeon and since it’s NYC and I have relatively good insurance, he’s a handsome charismatic foot-and-leg man to the athletic stars and his banter is very entertaining and informative. I KNOW WHAT YOU ARE THINKING, he would say, and then launch into the next stage of his succinct yet comprehensive description of what he was going to do to fix me. his name is David Levine and he is a charming man.
that very day they did the pre-surgery tests that everyone needs to get and it’s a super fancy well-funded hospital which tbh I am not really used to but could become very fond of, it was nice and IT’S WHAT EVERYONE DESERVES. very soon after I got home. my phone rang and it was the charming Dr. Levine and I had a feeling of dread and then he said WELL GUESS WHAT, YOU HAVE COVID.
he said EVEN THOUGH YOU HAVE COVID, THIS IS NON-ELECTIVE SURGERY SO YOU SHOULD STILL COME IN ON THURSDAY [in 2 days], WE HAVE PROTOCOLS FOR THIS.
Interlude: Just now an alert came on the screen saying
CVS: Order Issue
Jd, Rx MOD is being filled but is not covered by your insurance.
Prescription details: (LINK)
YES I KNOW, this is my stimulant modafinil that allows me to work parent cook exist function and insurance decided 3 years ago not to pay for it anymore so I get a GoodRx coupon and have to go to this specific pharmacy chain, which I specifically avoid in my neighborhood because it is also like descending in to hell and is survival of the fittest as far as the multicultural line of desperate people stretching down the aisle of unpacked boxes and locked up products waiting hours to get our shit and scheming how to gently fuck each other over to get past the ones in front of us so we can get the hell out someone faster.
We Have Protocols for This
so, two days later, the nice transmasc person picks me up at very early hour to take me to HSS where I get the super concierge treatment to keep me away from everyone due to my C status.
they put me in lil private exam room and the charming Dr. L comes in in his spacesuit and says, wow look at this, there’s a list of things I have to do in order, like 30 things, first I put on these gloves and then a few steps later I take them off to put in biohazard and so on. remember this is back when people thought/hoped you wouldn’t get C if you were vaccinated and all the docs/medical staff were at that point but few others, so he was hella chill but maybe he would have been anyway, so charming.
tbh I love passing out on anesthesia, I was so ready to be knocked the hell out so I was happily off to dreamless sleep and woke up as if no time had passed and I was in the recovery room. that was the easy part...
… because then I was home and had C and couldn’t walk and couldn’t take care of myself and no one really could either without being pretty damn scared and my nesting partner has type 1 diabetes which was #1 condition associated with C19 death.
2 wonderful JFREJ comrades worked to try to find me home care help but there’s was/is a shortage and finally I realized I just needed someone without specialized homecare skills who could just bring me some food and tidy a bit so I reached out to mutual aid groups to see who needed some coin and a nice woman helped me for a few weeks till I was over C or a bit longer.
2 friends had come over to help out after broken ankle and before C diagnosis. it was hard to tell them, guess what, I have C. one had also been super isolating and she said it felt like holding out as a virgin and getting pregnant the first time you have sex. neither of them got it. but one of them who I really loved and really miss died of LC last fall. I haven’t really been able to write about it yet.
also my kid was with me during and after the surgery for the first days and I’m not going to get into why but that really sucked too because we all had to isolate and somehow take care of one another despite me not being able to walk and having C.
(but fortunately, I was either C asymptomatic or not super symptomatic. it may just be that between having had surgery and being on painkillers and whatnot, and/or my ongoing chronic shit, I just couldn’t tell.) BUT REMEMBER the first time I had C, I had temporary remission of some of my chronic symptoms like sinus congestion and some types of fatigue, even though I had other symptoms of acute COVID like intermittent fever and other kinds of fatigue. So who knows what the hell was happening, really. shitshows are confusing.
Once I got past the C19 infectiousness period, I spent 2 months in bed and I’ll be honest with ya - it wasn’t all that bad. I had a reprieve from fatigue to a measure I had not previously experienced because I WAS DOING THE REST of STOP REST PACE!
I did crossword puzzles! I wrote poems and sent them to my friends and beloveds! Here’s one:
Broken Ankle Poem
For Sully
The length of the hallway is
longer than my loneliness and perhaps
Is multiplied by a percentage of percocet recently
downed, a bit later than yesterday.
Toes above nose, they say, and the pillowed ramp complies
But oh how I miss your eyes.
And the social media is good company
Until it’s not.
And then
It really isn’t.
And another:
Dusty Canyons
For Mark
The time I went to
the Mayo Clinic,
It was in Scottsdale, Arizona.
Not Rochester, MN.
Rented a car (the speeding ticket came, months later, in the mail).
Stayed in a motel.
Called my kid, then a toddler, who was with the sitters.
She just wanted to sing:
Old MacDonald had a farm, e i e i o.
And on that farm, over and over, he had a horse.
Behind the motel,
Went for a walk, of sorts.
Not often I’d had a chance
To be in desert scrub. Each unfamiliar pastel bush
Set apart by dust and sparse ground cover, pebbles
With hills behind.
and I (eventually) finished that Chronic Injustice report, and worked with one of my HIV movement mentors on a strategic plan for a key national anti-criminalization organization.
The broken ankle healed! like a healthy person’s! and I had practical step-by-step (literally) goals I did in physical therapy! It felt really rewarding.
also one of the times I went to the fancy HSS for an appointment, on crutches, I dropped my wallet (I call it a wallet, but you may call it some cards and cash in a rubber band) and I called security and this AMAZING PERSON reviewed the camera recordings and saw me drop it and realized IT HAS BEEN SWEPT UP INTO A DUMPSTER and HE SEARCHED THE DUMPSTER AND FOUND MY WALLET.
above and beyond, truly. reader, it was a time of miracles.
also, I had a hot C-safe person from Manhattan I was dating who I had found on Lex (???), the site legendary for NOT hooking up, and they would come over and have sex with me while my leg was up on a lil velvety ramp and it was sweet and also this is around the time when my nesting partner was starting to help me become a hot pain slut bottom… so the time passed.
Something Unleashed
but also, dear reader, in the end of February and/or beginning of March, the shitshow of vaccine/passing out/broken ankle/covid triggered or unmasked or unleashed… something.
post-covid vaccine syndrome? long covid? both?
I could have already had C when I got vaccinated. I could have gotten it at the vax site — it was crowded and stuffy and mixed together people who had a reason to try to get C testing with a reason to try to get vaccinated. Or I could have gotten it at the long, people-not-fully-masked “not-the-COVID-side” emergency room stretch.
At some point in the week after the surgery, my nesting partner tested both negative and positive. we don’t know which was correct, but there’s a chance they had it and gave it to me. the testing system was sorta melting down at the time. for the first time, they had a terrible headache that lasted days that was probably a migraine, and now they still get them, so maybe that’s their post-covid vaccine syndrome and/or long covid because they had gotten the first mRNA shot a few weeks before I did.
that time, which I think is the second time I had C19 and the first time verified by testing, is when I got lasting and more disabling symptoms. I was still a patient of Susan Levine, one of the nation’s only ME specialists and the only one with more affordable out-of-pocket fees though it’s still a stretch and out of reach of far too many. she believed that my having passing out was idiopathic, that is to say we don’t know why but hoped it wouldn’t happen again.
but nonetheless I went on and remain on I went on a beta blocker to regularize my heart rate. it tends to be helpful for people with ME/CFS anyway and it helped me sleep and feel less anxious and finally stopped the remaining though infrequent racing heart feelings i’d had since C19 bout one in 2020.
but weird bad stuff started happening, or happening more severely or more often:
I started feeling like I got an instant sinus infection most every time I ate, and my acid reflux and indigestion and related woes got a lot worse and more frequent.
my skin got itchy burning with no rash, until I scratched to the point of rashy scabs. old long-healed tattoos became raised like welts.
I came to find out this is Mast Cell Activation Syndrome (MCAS) and unlike most people I was not gaslit about it. In fact, I gaslit myself for a while because I thought it was only a thing when it was severe, anaphylactic shock or close to it… but with support from my new chronic doctor Lee Hinnant, I gradually started a whole bunch of things: H1 and H2 antihistamines, mast cell stabilizers like oral and nasal cromolyn sodium and compounded pill and eyedrop ketotifen, low-histamine probiotics, DAO enzymes with meal. it got a lot better though not all the way. I also ate a low histamine diet and ate as much super fresh food as possible and bought a chest freezer so I could freeze leftovers instead of refrigerating them, and it all really helped but then as I got better I got worn out of it all and did less of this and got worse again, it’s a vicious cycle.
my brain fog got worse to the point that I didn’t know how I would be able to keep working (even at my super-fortunate, super flexible part time consulting-from-home pace.) I made some really, really dangerous mistakes in my work that came from not thinking clearly.
and words were not my friend as much anymore, and were often getting stuck or lost between my brain and vocal cords and the outside world. when it happened, it felt not only mentally and emotionally devastating, it felt like a physical ache. This and the brain fog have gotten so much better thanks to Low Dose Naltrexone (LDN) but still crops up when I am fatigued, tired, PEMming, heartbroken or under extra stress).
I want all of this to not matter.
I want research to look at all of us with any or all constellations of symptoms to find out and provide what helps us, without getting caught up in what triggered it.
I want providers to listen to everyone and really hear what is fucking up our quality of life and our present and our futures, and help us.
I want everyone who needs it to get FOR FREE the dozen or more treatments that helped me dampen down the MCAS, brain fog and word-finding problems enough so I could still work.
And that needs to include the super expensive stuff like XOLAIR® (omalizumab), which I was able to get this year when the other MCAS stuff stopped working as well, and the sky-high expensive SCIG (subcutaneous immunoglobulins) that I was able to then add on when I FINALLY got a diagnosis of lifelong selective IgA deficiency. (SCIG and its sister treatment IVIG were the #1 most effective treatments for ME/CFS and Long COVID in the massive Open Medicine Foundation self-report treatment study, though very, very few are able to access it as it is literally over $10,000 per infusion. )
I want us to be able to to talk openly about what happened to us when/after we were vaccinated, without worrying we are playing into the hands of eugenic Nazis who are well on their way to killing million of people worldwide.
I want everyone to have access to Centers of Excellence for Complex Care where diagnoses open doors not slam them shut, and where people who DON’T EVEN THINK COVID IS REAL OR WHO WOULD BE SHUNNED IF THEY ADMIT IT can get compassionate, effective care because THAT IS HEALTH EQUITY and that may just be the way we get care for the rest of us.
I’m back in bed. I’m not supposed to put weight on this foot for most of 2 weeks so the incision can heal.
But the bone is stronger than before the break. my body healed by growing extra bone mass that makes me strong. May we somehow become stronger in this crisis, strong enough to not just survive but to “kick the shit out of [these diseases so] we're all going to be alive to kick the shit out of this system, so that this never happens again.”
Thanks for writing about this. I've just had an early positive on my PlusLife Machine, I don't even want to write what number infection it is. I'm already so so sick with ME/CFS and LC and take so many precautions but if my ND kid wants to live well, live a full life I can't shield to the extent I would if I wasn't a parent. Again the sick and disabled carry the burden for a society that doesn't see precautions as necessary anymore. The grief and rage is so real.
Hope your ankle continues to heal.
Appreciate hearing of your sinus troubles and MCAS. Nasal Cromolyn is on my list to request from my GP today, I never had sinus issues before covid and hope it'll help the mast cell related sinus troubles.
In solidarity from the c trenches.