Interesting things I have learned by writing about True COVID-19 Survivors, Warriors & Long-Haulers.
Updated: Dec 10, 2020
Carolyn Andrews (me) Founder, Writer, Blogger for Truestoriesofcovid19 mask created by Cathryn Holzschuher (my sister)
I had a dream in late July when I was on a short FMLA leave from work... I was in the sleep that some refer to as "twilight" sleep. (I was both awake and asleep) and my mind was running: I believe that twilight sleep is supposed to be that time when you are most creative and come up with your best ideas and in those early morning hours, I had one come to me...
COVID-19 had been hitting the United States for a few months and I believe that not only had my mom, Emily, contracted a very deadly case of COVID, the 2nd day of March, I believe that I also had contracted a mild case, the same week that she was in ICU fighting for her life. Since neither of us was allowed to be tested, since we had not traveled out of the United States, we can only assume based upon her symptoms and how fast she was hit by it, that she had it and that I had a mild case of it. (Read my mom's story here)
It was about 3.5 months after she somehow miraculously recovered fully after 7 days and came home, that this idea came to mind. (I remember even saying it out loud in the dark.. basically just talking to myself... "Write a book about True Stories of COVID-19".. )
I told my sister the next day that I wanted to write a book, but to be honest with you, the most I have ever written was maybe a decent email or two at work. I had never written anything in my life and wasn't sure why or how I was going to write a book for goodness sakes... I guess that is the magic that is found in "Twilight Sleep", maybe it's this time of rest that we are most connected to the spirit world or our spirit guide or a higher power (I honestly don't know if this could be true...I know it sounds a bit "out there". What I'm trying to say is that there's something special about Twilight sleep where ideas, even crazy ones, come to you. (Someone who has never written anything in her life, was going to write a book.... yep, sounds pretty crazy to me too!!) BUT I WANTED TO DO SOMETHING THAT WOULD HELP CREATE AWARENESS AND KEEP PEOPLE FROM GOING THROUGH WHAT MY MOM WENT THROUGH.......WE ALMOST LOST HER. My sister, Cristin, suggested that I write a blog. So....I created a blog name... "True Stories of COVID-19" and about a week of thinking about it, later one evening, I found myself paying for and designing a blog... I just went for it. I wasn't too sure how I was going to do it, but I hit the purchase button and my blog became a reality. My sister, Cathryn, who is very creative, created my logo, and away I began writing. (If you have a story that you would like to share with me and have featured in my blog- please email me at Carolyn@Truestoriesofcovid19.com
Now, to stop boring you, let's get to the reason I'm writing this particular piece today: I want to tell you about the interesting things that I've learned about by interviewing, talking to, and writing about COVID-19 Warriors, Survivors, Long-Haulers, and sadly I have also learned from family members who had loved ones battle COVID, and very sadly, not survive.
Before I tell you some of the things that I've learned, I will add my disclaimer here: "I am not a doctor or medical professional, my interesting findings are not suggestions for anyone to change anything that they do, regarding their medical care for themselves or family as they fight a COVID infection. " I just felt that some of these things were too interesting not to tell.
Things I have learned while interviewing and writing about COVID-19 Warriors:
My Warrior definition: Anyone who is currently battling the Coronavirus- whether a patient who is ill with a COVID-19 infection or a Front-Line professional who is battling the virus from a medical care perspective while taking care of sick patients. Warriors are also those who battled a COVID-19 infection.
SO LET'S BEGIN- WHAT HAVE I FOUND OUT?
NOT ALL THOSE WHO WILL GET COVID-19 ARE ELDERLY OR HAVE PRE-EXISTING CONDITIONS. MANY ARE YOUNG AND COMPLETELY HEALTHY. (It is completely untrue and dangerous to think that you are safe from contracting the Coronavirus because you are young, healthy, or have no pre-existing conditions... this is just not true)
All Coronavirus infections are not equal: some people have just mild symptoms; cough, runny nose, fatigue, slight body-aches and feel bad for 3-4 days and are better. Others have serious symptoms that require hospitalization and possibly a ventilator to help them breathe, while they are in an induced coma.
Everyone does not have the same symptoms, but just because your symptoms don't match those of another person, if you have symptoms and a positive test, it's likely you have COVID-19 and you should quarantine away from others. You can also have symptoms and a negative test- If it were me, I would just judge by my symptoms, to determine whether I have COVID, as there are also false negative tests. If you have symptoms, better to quarantine and be safe, rather than sorry.
Symptoms include- Dry cough, Fatigue, Painful body-aches, runny nose, sore throat, shortness of breath, hoarseness, thick phlegm (many stories that I have written begin with the Survivor thinking that they are having a bad allergy attack) other symptoms include high fever, low-grade fever, no fever, (not all mild or serious cases have always included a fever... there have been mild cases with no fever and serious cases with no fever). Severe Headache - some have had them for 3-4 days in a row and no medicine will take the headache away. Some have had them for months. Nausea, Vomiting, GI issues, to include Diarrhea and abdominal pain. Confusion (in the older population- not sure if it's the high fever or the virus, but my mom forgot who the President of the United States was, the night she ended up in ICU), Tremors, COVID pneumonia, (usually it progresses to double pneumonia, or the person is found to have "ground glass particles" in their lungs, which are caused by the virus infection. High D-dimer levels and blood clots or thickening of the blood, which puts them at risk for clotting, seizures, strokes, heart attacks, heart failure, increased blood pressure, chronic chest pain, sepsis. (There can be some really scary/life-threatening symptoms with this virus)- As mentioned, not everyone gets to that level of symptom. Some just have a mild runny nose, sore throat fatigue, and cough and fever for a couple of days and are perfectly fine the next- BUT WHY TAKE A CHANCE AT NOT BEING CAREFUL, WHEN THERE'S ABSOLUTELY NO WAY TO TELL IF YOU WILL BE THE MILD CASE OR THE CASE PLACED ON A VENTILATOR...OR WORSE....
IT IS POSSIBLE TO TEST TOO EARLY AND STILL COME DOWN WITH SYMPTOMS. (Some run and get a test, as soon as their significant other comes down with symptoms and they get a negative test and believe that they are ok and go out and about while being asymptomatic (and passing around the virus) and days later they come down with symptoms and the 2nd COVID test comes out positive.
LOSS OF TASTE AND SMELL IS A CLASSIC COVID-19 SIGN. IF YOU HAVE LOST YOUR TASTE AND SMELL, IT IS POSSIBLE THAT YOU WILL COME DOWN WITH SYMPTOMS IN DAYS TO COME, IF YOU HAVEN'T ALREADY. (Others describe still smelling odd smells like chemical smells, coffees, burnt smells, and not so great smells- they cannot smell anything if put up to their nose, but they smell phantom-like smells.)
COVID-19 is NOT comparable to the flu.... this is one of the MISCONCEPTIONS that I absolutely hate to hear the most. This virus is not at all like the flu and those who have contracted it know that. I hate this comparison so much, that my sister, Cathryn and I, designed a shirt to wear that makes sure everyone knows how we feel about this comparison.
#CoronavirusNOTliketheflu shirt, get yours by clicking on the title of the shirt
underlined above in red.
If you are diagnosed with Coronavirus, I think one of the most crucial items to have in your medicine bag is a Pulse Oximeter. I got mine on Amazon.com (and had it in 2 days). It's important to check your O2 (blood oxygen) levels, as this virus tends to attack the lungs and it's important to know when your O2 levels are too low and you should go to the emergency room. (I will not tell you what % you should head to the ER with, as I have heard various things like- "if you go under 93% go, and if you get down to 88% (which sounds way too low to me)" then go. I would suggest getting the oximeter and asking your Doctor, what number is an appropriate % to be concerned about.
The Coronavirus is highly, highly contagious and you should quarantine away from others if you contract it. (It is especially important to do this, as you don't know how bad one person will get it vs the other.) I have written sad true experiences of husbands and wives who both had COVID-19 and one had it mildly, while the other passed away from it.
There are people who have symptoms 6-8 months plus after they have been infected by this virus- they are called Long-Haulers and they experience, relapses, they have good weeks where they may feel normal and then bad weeks, where they cannot get out of bed. The after-effects that they experience can include shortness of breath, cognitive/memory issues, hair loss, loss of balance, and coordination, some experience COVID-19 induced Gillian Bere' syndrome and have to begin using a wheelchair or walker. Fast heart-rate... many at rest will suddenly have their heart-rate begin beating too fast with tachycardia (heart-rate of over 100 beats per minute at rest) or bradycardia (heart-rate with extremely slow heart-rate as low as 45 beats per minute. Pleurisy or inflammation of the lining of the chest wall has been a common complaint. Long-Haulers can be sick in bed for months, and cannot work, and cannot live a normal life like before COVID-19 touched their lives. Their days are spent in bed or at doctor's appointments or in some cases, back in the ER seeking medical help for one of their after-effects that has once again reared its ugly head. (I'm sure I am missing some of the after-effects that Long-Haulers experience) Many Long-Haulers have to work with Physical Therapists and Speech Therapists after battling a Coronavirus infection. (Yes, it's THAT bad!)
Convalescent Plasma: (Convalescent plasma is blood plasma taken from people who have recovered from COVID-19. It contains antibodies that can recognize and neutralize SARS-CoV-2, the virus that causes COVID-19, as well as other components that may contribute to an immune response.)works for some severely ill patients and helps them to get better and for others, it may not help the patient to improve. So far, no-one is sure why yet. WITH THIS SAID, IF I HAD AN EXTREMELY SICK RELATIVE WITH COVID-19, I WOULD PUSH FOR THE PLASMA. A number of those in my blog were extremely ill and credit plasma treatments for saving their lives.
Exercise can cause relapse in patients who were severely ill. I have reported on some patients who had a relapse after exercising and I've read on some of the Survivor boards that some Doctors have advised their patients who have been extremely sick with an infection, to not exercise until fully released back to exercising, as, in some patients, it has caused a relapse of the virus and the symptoms that come with it. It has also amazed me that a number of those I have done Survivor stories on were either marathon runners, worked out religiously, would juice for health, and had an extremely healthy lifestyle and low BMI, due to working out.
Can you get COVID-19 twice? I have heard that there are a number of different strains of COVID-19, I have heard that some of my Survivors have gotten it twice, but then they have questioned whether it was lying dormant in their system and something caused it to rebound again and others believe that they were infected for a 2nd time. I DO NOT KNOW THE ANSWER TO THIS.....AND CANNOT CONFIDENTLY TELL YOU YES OR NO.
LASTLY, "MY OPINION" MASKS WORK AND SHOULD BE WORN. I will leave it at that, as there are many, many opinions on the "mask topic".
I'm sure I have probably missed some other very important or interesting Coronavirus related facts that others have found out about through researching this virus or by personally being infected by it. Feel free to email me @ Carolyn@Truestoriesofcovid19.com if you have any thoughts or additions to this article that you think that I should amend. I'm sure there is PLENTY more that I have not yet learned about the novel Coronavirus.
I know one thing........... I HOPE that it goes out as quickly as it came in.... I'm ready to return to normal life, as I'm sure that you are as well.
Carolyn Andrews/Founder/Writer Blog: www.truestoriesofcovid19.com,
Email address: Carolyn@truestoriesofcovid19.com
Our Facebook forum- all who have had COVID-19, have it now, or have had family who has had it in are invited to request to join by clicking here (The Coronavirus Forum)
True Stories of Covid-19 shop: Buy your Warrior, Survivor, Long-Hauler, and In Memory of a
Covid-19 Warrior- shirts, masks, bracelets, decals, cups, Christmas Ornaments, etc. by clicking on the underlined shop name above. (All shop items are made by my sister Cathryn and her husband Scott, in Baxley Georgia & all proceeds that I make go to keeping my blog running and paid for)
Please don't hesitate to contact me if you would like to be featured in my blog. I write True Coronavirus stories for Warriors, Survivors, Long-Haulers and I also write Tribute Stories for loved ones who battled COVID.
Thank you for helping me continue to raise awareness of this devastating virus- maybe together, with the information that we provide from your personal experiences, we can possibly help to save even one life... (That's why I do what I am doing right now.....)
Best wishes and stay healthy and well, Carolyn Andrews