Thursday, October 14, 2021

Sunday, October 10, 2021

A Long Covid Patient Contributes Her Words Here

I am very happy to feature the words of Carole Terrizzi below.

While she and I are "co-workers" (we are both Professors in Residence) for a large, public university, we did not know each other very well until this experience.

Now for better or for worse, that has changed and we text each other very frequently.  Every day.  Long Covid is isolating.

     "Covid has changed my life. It has taken away my essence and my peace. I was fully vaccinated in April 2021 but contracted the virus in late August. My symptoms were mostly that of a very bad sinus headache and nausea. I never thought I had Covid. From my symptoms I really thought I had a brain tumor. I took myself to the emergency room and they said I had Covid. I got monoclonal antibodies."

     "The headache and nausea were incredible for about a week and then subsided. About a week later I got sick again. Nausea every day.. brain fog.. tingling in my legs. Aches and pains. So hard to sleep."

     "Anyway now it’s October and I’m still sick I’ve been to the emergency room five times. Oh I forgot the high blood pressure. I have seen my GP at least 5 times, and a neurologist and soon a gastro doctor." 

     "I am convinced I have something deadly. I am ridden with anxiety. For now, that’s my story. I’m sad… depressed and I feel like I will never be well again."


Would you like to contribute your words, experience, art work, poems, vents, rants about Long Covid here? Please email your contribution to me at triadasamaras@gmail.com If you wish to remain anonymous I will not post your name. Triada













Saturday, October 9, 2021

If you have Long Covid you must start Here

 If you have Long Covid you must start here:


Survivor Corp

https://www.survivorcorps.com/

https://www.survivorcorps.com/advocacy

https://www.facebook.com/groups/COVID19survivorcorps/


Post Covid Care Centers

https://www.survivorcorps.com/pccc


Time

Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes

WHO/World Health Organization

https://time.com/6102534/breakthrough-infections-long-covid/?jwsource=cl






Wearing my New Work Clothes to Bed (Digital Media 3)

 



One of the things I have done while having Long Covid is shop for recycled clothing at this awesome site. I have never had so much time to scroll through clothes!

I call these items: "New work clothes."  Only I am not working.  So I wear them to bed.

Here I am in my new "work" dress that fits like a glove.  Thank you Thred Up!

(And the returns are so easy too).





Yes I was vaccinated....

Was I vaccinated before I got Covid in July 2021?

Yes I got the Moderna vaccine twice in January and February 2021.

Was I treated with monoclonal antibodies in the first 5 days after getting Acute Covid in July 2021?

Yes I was given monoclonal antibodies on day 4.

Was I wearing a mask when I got Covid on vacation in a small, rural and very picturesque town in New England?

Hell yeah.  But it was a very loosely-fitting cotton one.  But I wore it every time I was indoors dammit.

The rest is history. (HERstory)














Long Covid is Long (Digital Media 2)

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.





I feel for this man.  Deeply. I read such stories all the time.


I do feel I was lucky / blessed to get Long Covid AFTER being vaccinated. 
My time table with Acute Covid was VERY LUCKY.
And I feel the monoclonal antibodies I got when I had acute Covid helped a 
great deal.
These measures are making my Long Covid undoubtedly milder!
And will help me in the long haul.
No ifs ands or buts.









Friday, October 8, 2021

Would you like to take a survey on Long Covid?

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

https://www.mountsinai.org/about/covid19/center-post-covid-care?_ga=2.129355599.210466550.1633726943-2025958528.1631413144








Long Covid is Long Long Covid is Long (Digital Media 1)


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Long Covid Diagrams and Information


These graphs and information come from an interesting site I found on-line tonight:
Pensum Regenerative Medicine




"The above diagram shows just a portion of the symptoms that some patients who are recovering from Covid-19 infection are manifesting. They present with these symptoms long after they have tested negative for the covid-19 virus. These are a group of patients that are now given the name Covid Long Haulers."




"Patients having long lasting symptoms after a viral infection are not new. This has been seen in the past with Ebola, and the first SARS virus in the early 2000s. Both viruses gave rise to long-lasting symptoms after some people recovered. A 2009 study in Hong Kong found that psychiatric problems and chronic fatigue still plagued SARS-1 survivors up to four years later. The Ebola virus can persist in their bodies, including in the eyes and the central nervous system, even after being cleared from the rest of the body."

"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."

WHAT MAY BE THE ETIOLOGY OF THE LONG HAULER 

                                           SET OF SYMPTOMS?

"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:

LINK












Thursday, October 7, 2021

Just Another Long Covid Day or Three (Herstory 3)


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)







Delayed Recovery After Exercise Found in ME/CFS and Fibromyalgia

  Delayed Recovery After Exercise Found in ME/CFS and Fibromyalgia https://www.healthrising.org/blog/2022/02/16/delayed-recovery-exercise-fi...