One of the silver linings in Long Covid is this:
I am playing around with digital media from my bed.
Why not? Even if my hair is falling out a bit on the keyboard and I have the usual splitting headache, what the heck.
One of the silver linings in Long Covid is this:
I am playing around with digital media from my bed.
Why not? Even if my hair is falling out a bit on the keyboard and I have the usual splitting headache, what the heck.
One of the things I have gotten rather obsessed about is surveys and research studies on Long Covid.
There are many studies about Long Coivd taking place and many looking for volunteers. Who knew?
Welcome to my new world.
An Initiative Funded by the National Institutes of Health
https://nyumc.qualtrics.com/jfe/form/SV_bftG8HFabFKW5KK?mc_cid=9103f2226d&mc_eid=9189bce825
This is my treatment Center in NYC. I feel so very blessed to be here:
LINKS:
https://reports.mountsinai.org/article/pulm2021-08-center-for-post-covid-care
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"Covid Long Haulers, recovering patients whose symptoms persist after their coronavirus infections disappear, are a mix of younger people who never needed hospital care and older people with chronic conditions that predate Covid. Their symptoms trail the infection’s path through their lungs, hearts, muscles, nerves, and brains. Deadening fatigue can dog them for weeks or months. Sometimes their problems wane, then resurface in a stuttering pattern that leaves them wondering if they’ll ever get over the condition. Long-haulers include two groups of people affected by the virus. Those who experience some permanent damage to their lungs, heart, kidneys, or brain that may affect their ability to function. While the second group continue to experience debilitating symptoms despite no detectable damage to these organs. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease."
"This may be due to an immune-inflammatory response gone amok, or perhaps to ongoing viral activity that might not be clinically detectable. The etiologies are almost certainly multifactorial, but may involve overzealous immune responses, cardiopulmonary or systemic inflammation, vascular inflammation or clotting disorders, and direct damage from viral replication during acute illness."
For more information see:
Think about this: it's not uncommon for me to lose my turtle, my darling 28 year pet turtle, in my mess. She loves it in fact. Loves to hide under clothing and empty bags. Thats why she's a keeper.
But I digress. My latest Long Covid symptom is head splitting headaches and brain fog. Or is that splitting headaches? Brain fog does strange things. It makes up new words and completely forgets old words. I forget the names of people I have known for decades. I went to the doctor's office and the nurse asked me:
"Who are you here to see?" Damn I could not remember my doctor's name.
It was embarrassing. The other people in line stared at me with that blank annoyance face you get in NYC. It's the quiet face but they want to kill you. You know that one?
Later on the same day or was it another day?....
Later that week because it really wasn't the same day I don't think, I was walking down my street and I saw a neighbor who I have known for 25 years and her daughter and a couple more folks from the block.
As is customary they waved to me and said,
"Hi! How are you??" And then they froze remembering that my son had told them I had "the Long Covid" and their faces fell.
"STAY AWAY!!!" they shouted to me. They made crosses with their two index fingers on their outstretched forearms pointing in my direction. I saw several crosses aiming straight at my body (that's an old rock song, I think).
I have told people more than thrice that I had COVID nine weeks ago and I am no longer contagious.
Does not matter.
So I hollered my customary "Hi!!" to them from two houses away (about 40 feet on the city sidewalk). Then, in so doing, I realized I had forgotten the name of the daughter. My mind was a blank. I looked at her puzzled and confessed. Another embarrassing public moment. But no matter.
She just laughed and said, "Of course you forgot my name! You have COVID!"
Then, there was fresh terror on the faces of the other three.
"No." I replied. I have Long Covid, not COVID.
Does not matter. As long as people hear the word Covid they jump back 20 feet.
"STAY AWAY!!!"
I'm used to it at this point, the emotional abandonment I feel and sometimes from people I care about. I don't blame them. I would probably act the same way. "Would I?"
Too tired to care.
So I went home and I unloaded a few things I had purchased for my dinner. Then, I went to look for my receipt because I wanted to compare the prices of this new store today with the one where I usually shop.
This is my Long Covid "brain gym" moment du jour, comparing numerals and words on a small piece of white paper. I don't feel so guilty skipping my doctor recommended Sudoko puzzle for the day.
But I couldn't find my receipt. I looked everywhere in the kitchen. And I couldn't find it. I really couldn't. I did a little circle around my house trying to focus with intent to see where the receipt was. No receipt. No window open. No breeze blew it away.
Then something dawned on me. The receipt was also with my "change". And my "change" was 50 bucks! I needed to find that receipt because I really wanted to find my money! Around and around the house I went. Nothing.
For 30 minutes I circled around aimlessly. I was not so annoyed. Just my new, listless wandering state in which I find myself these days. But I was trying to focus with intent.
"I feel apathetic," I keep telling my friends, "I feel like I care about nothing."
Then I remembered something another neighbor had once told me long ago. The husband of the one who was outside earlier.
"If you are ever looking for something in a house, always check the fridge," he had said. He was a retired NYC Police Officer and that was their motto.
So I found my way back to the fridge: the original crime scene. When I opened the door there was my "change" and the receipt lying oddly next to the Oat Milk and the overpriced chickpea spicy carrot veggie bites. The whole scene looked like a semi-interesting, semi-laughable still-life photograph. Or a weird refrigerator ad. I did not get my cell phone to take the photograph. I did not care enough.
I really think Long Covid has turned my brain to mush. A few weeks ago I kept repeating to anyone who would listen, "My brain feels like a marshmallow."
Now my headache is too strong to feel the marshmallow. I truly hope there will be some artistic benefit to all this suffering and not just a bunch of banal humiliations.
I wonder what is next: Finding my house keys in the Magic Pot? My paintbrush in the mayonnaise?
(Go to Herstory 4)
I am posting some resources I have found here, This is a 'random' list. Whatever I have seen and clipped from the "newspaper"/ Internet these days makes it here. Also I keep adding things as I find them.
I do not mean for this to be an exhaustive list by any means.
Post Acute Covid-19 Program LINK
In the wake of COVID-19, the medical community has begun to acknowledge a subgroup of patients presenting with "long hauler" or persistent symptoms after an initial COVID-19 infection. The team at Mount Sinai Health System first identified this novel symptom presentation, and named it Post Acute COVID-19 Syndrome or "PACS". To address the needs of individuals experiencing PACS, the Department of Rehabilitation and Human Performance, along with Mount Sinai’s Center for Post-COVID Care, has developed a novel rehabilitation program. We are one of very few Centers in the country providing these services to patients of all ages. To learn more about this program, please email us at PRcovid@mountsinai.org.
Media Articles
For more information on post-COVID conditions, refer to the personal stories of COVID-19 survivors.
Survivor Corps
HomePage
Survivor Corps
PCCC's NJ (Post Covid Care Centers)
https://www.survivorcorps.com/pccc-nj
Survivor Corps
PCCC's USA
https://www.survivorcorps.com/pccc
The Lancet
The Scientist
Survivor Corps
COVID 19 Long Hauler report 2020
Dozens of centers have popped up to treat the growing number of Americans whose symptoms just won't go away
https://www.youtube.com/watch?v=5X40sIcOxSY
(Herstory 1)
-------------------------------------------------------------------------------------------------------------The dotted line above at the end of my last post indicates a time warp.
Those words above the dotted line are from what seems to now be another lifetime of adventures I had. That lifetime feels so far away now... almost like like I drove away from that life long, long ago. I crossed over a train track never to return to it. It seems like the words and the images of that life all belong to someone else. I wish I was kidding. Covid is very trippy and I was never an LSD person.
In the new here and now of my world there is only covid or COVID and me.
First came acute covid, then post-acute covid, then post-long-gone acute covid, then post-covid but the maybe lingering covid, then more lingering languishing covid then why the hell won't this go away COVID, til now when I finally arrived at the lastest stop of the covid journey the dreaded "Long Covid"
This brings me to my first and on-going reaction: WHAT NEW FRESH HELL IS THIS?
I would scream F--K!!! at the tops of my lungs if I could but nope my lungs aren't exactly going to be doing that anytime soon.
So I will record stories blog make drawings do art do whatever I can.
I am stunned into a new state of being that I have surely not experienced before and hell no I would recommend this to my friends.
Brain Fog. It's like a long winding road in Maine when the mysterious fog rolls in from the seas: Dense fog ahead.
I have decided I will work with that (too). The fog. And all the rest. As an artist, I will 'co-act' with Covid.
Whatever else am I supposed to do?
(Go to Herstory 3)
Delayed Recovery After Exercise Found in ME/CFS and Fibromyalgia https://www.healthrising.org/blog/2022/02/16/delayed-recovery-exercise-fi...