By AMIRA A SALEH, M.S. (pre-print)

If you're checking out this book, the chances are maybe you or someone you know has Long COVID. More than 100 million people, or about one-third of the population of the United States, have been infected with the coronavirus, SARS-CoV-2, and developed the acute viral pneumoniae-like disease called COVID-19. Over 1 million people have died because of it. The CDC.gov reports estimate that at least 20% of these folks will go on to develop into the chronic phase: a lingering constellation of symptoms called Post COVID-19 Condition otherwise known as Long Haul COVID or Long COVID. Most folks don't really think much about Long COVID until it happens to them or someone they care about. When they do take a moment to think about Long COVID or are confronted with someone with Long COVID, they just don't relate or understand the extent of how much the human body can dysfunction and still keep alive--how disabling the condition is -- until they develop Long COVID and experience the disabling event for themselves. Fortunately the human body is constantly under repair.

Try to imagine having the flu that normally lasts one to two weeks with the usual symptoms of COVID-19: fever or chills, cough, shortness of breath or difficulty breathing, fatigue, muscle or body aches, headache, new loss of taste or smell, sore throat, congestion or runny nose, nausea or vomiting and diarrhea begin turning from a week to two weeks to a month and then into years long of an ordeal with new symptoms that you did not have prior to contracting COVID-19 or even had during the active infection. Imagine being sick and never testing positive for COVID-19 or even being asymptomatic until one day a cluster of serious symptoms just start. Confounding, isn't it?

Now imagine your entire body in a constant state of unpredictability – where one minute your blood pressures skyrocket while lifting your head to sit up and the next minute, nosedive; shuffling your numb feet across the room completely takes your breath away and your heart races to almost double the normal resting value while you lie asleep in bed. The whooshing sounds amplify in your ears as the veins in your neck throb and a nothing-like-ever-experienced-before headache pain overtakes you. You lie awake for days and when you do manage to drift asleep, minutes later you awaken from what was very vivid dreams to a room spinning and needing glasses suddenly to see. Now imagine getting up to walk to your bathroom and your legs just collapse out from underneath you as you drop to the floor. Amidst the constant droning hiss, imagine a cacophony of ringing in your ears so loud at times that you jump startled thinking, “did someone just bang a gong right next to the side of my head?”

Shocks begin randomly go up and down your spine to the top of your head, back down your spine down to your lower legs as if you had touched an electric buzzer only it's more like having a faulty spinal cord stimulator with variable random signal intensity all of which terminates with a most unpleasant stinging sensation. When the zapping pauses and you break for some food, you can’t taste much of it and what you do taste doesn’t taste the same anymore and you struggle at each meal to chew and swallow some nutrition. As you lift your hand to take a sip of hot broth you’re the tremors and spasms happen and you spill broth all over an already unimaginable raw itching patch of skin on your chest.

Imagine sitting on the commode and waiting for your bowels to finally empty and for your bladder to express your urine and your arms and legs flail out because you just had a seizure that nearly lands you on the floor. Only thing worse, would be all this happening inside a moving vehicle. In the back of your mind, you worry that every time you make a movement you could lose control and so you stop driving vehicles. Imagine walking across the hall landing and experiencing a loss of consciousness and then dropping to the floor without bracing for impact and hitting your head making a hole in the drywall along the way. Getting a sense of how Long COVID feels?

You begin to feel as if your body is being turned inside out as nearly every type of human tissue membrane, blood vessel and blood cells in your body become vulnerable and altered by the effects of SARS-CoV-2 and its viral proteins. As the realization that something is very wrong with your bodily functions grows, the anxiety increases and is amplified by the immune dysregulation of your gut and blood glucose control mechanisms. Your whole body feels like it is unraveling before your eyes--panic begins to escalate as you lose more control and desperately seek validation and a way to stop and fix this condition. You start wondering "Can this really be happening to me? Am I losing my mind?"

Imagine the worst illnesses you could ever dream up and now combine a couple of them. That is what Long COVID feels like physically. Emotionally, now you're fighting just to make it through each hour of the day. Your body’s ability to move fluids between tissues, regulate water throughout the body, generate adequate energy within cells, regulate the autonomic or automatic functions of the body, communicate between various organs and between the central nervous system and enteric nervous system becomes a bit unpredictable. Because so many organ systems, tissues, blood vessels and immune cells can be affected, the number of symptoms documented are well over 200, and the combination of these symptoms can vary from person to person and from time to time. Well, that's going to make Long COVID diagnoses easy, right? Wait until your lab work comes back appearing “normal.”

How is anyone in the medical community expected to perform a differential diagnosis on a patient with all these possible symptoms in a timely fashion? What traditional diagnostic tests should be considered, and which new ones need to become the standard of care? Who and where can you go to seek care for Long COVID? How will the doctor know you have Long COVID? What treatments and strategies for symptom management are available? What can you do to help improve your symptom management and help along your recovery? What are you going to need to support your recovery? How can you help your loved ones, friends, colleagues and medical providers understand what you're enduring? What can doctors and other medical providers do for their patients who have Long COVID? What can HR managers and leaders do to retain their staff with Long COVID while they recover? And what can the community do to help all those disabled with Long COVID get to recovery?

Let "About Long COVID" be your definitive guide about Long COVID -- begin your search here for Long COVID treatments, relief and answers!

All proceeds from the sale of this book are donated to the public USA-based LONG COVID ASSOCIATION, (EIN#87-4719799), an IRS 501(c)3 charitable scientific research organization that researches, educates, and advocates for health equity for the recovery of all those disabled by Long COVID.

Questions: book@aboutlongcovid.com

Donate what you can and Amira will send you the E-book “About Long COVID” (taking pre-orders)

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