Lately things have changed or become more noticeable. I can no longer overlook or keep quiet about the unrelenting and new symptoms which are affecting the quality of my living. I am not alone. There is even a name for us - Long Haulers. I hate the name. There is a Facebook page, Survivor Corps, https://www.facebook.com/groups/669615740453955/, which has over 100,000 members. There are almost 98 symptoms (see charts below) that survivors list as continuous and/or new. There are horrifying stories and I must admit that mine are not as bad, in comparison. But... for me as I experience the ones I have, they are bad FOR ME. And I want them gone. I want to be whole again.
During the throes of COVID-19, I had no breathing issues. I noticed that I was breathing differently after my fever left, however, I didn't acknowledge it, because I was over Covid-19 (or so I thought), and I thought that if I gave it no attention, it would go away. (Please don't ask me to explain my rationality or irrationality). It was not until I went back to work, that I noticed that I struggled to breathe while wearing a mask indoors for any extended period. Many days, I would work from home or work a shift by myself so I could be alone without a mask. Thankfully, I had that option. An EKG revealed a double breath; a stress test and Echocardiogram - fluid around my heart. When my heart started beating overtime one day for more than two hours and I was not wearing a mask, a visit to the doctor, another EKG, a CT Scan on my lungs and blood tests turned up nothing. Well, it did reveal that everything is ok with my heart and lungs and there are no blood clots, things to be oh so thankful for, and I am. But what is it?
When my breathing issues go (they do take a break), here comes acid reflux, when acid reflux goes here comes lower back pain and when lower back pain goes, here comes... and then we do it all over again, some of them doubling or tripling up. Throw in stomach issues, no taste, itching, chills, sadness, lack of motivation, anxiety, malaise, crying uncontrollably… Some of these issues aren't new for me. I have acid reflux, lower back pain and stomach issues as recurring conditions. However, they are now different and/or worse. And how about vertigo (I have had one episode) and itching under my armpit (lasted about two weeks). I have read posts on Survivor Corps where both symptoms are mentioned as post Covid-19 symptoms for some people. Thinking back, there was the painful, crusted and cracked back of my hands which I thought was caused by an allergic reaction to hand sanitizers or by too much hand washing. But at that time I was not using hand sanitizer or doing the birthday song washing of the hands. This happened shortly after Covid-19 when I was home and hadn't been outdoors. Another is my lost appetite during Covid-19 and my loss of taste after Covid-19. What looked like bruising (a medical condition where fat leaches into the skin) on my legs pre Covid-19, tripled its size and darkness post Covid-19, and is no longer splotches developed over 10 years, but one big blotch, almost half-way around the circumference of the bottom portion of my right leg. I no longer expose my legs; leggings or pants covered my legs this summer, no matter how hot it was. Say goodbye to beaches and bathing suits, dresses without dark pantyhose or leggings. I can live with that, but not the unknowing.
Covid-19 has and is impacting my living. I am not a hypochondriac. I am not looking for sympathy. I am not exaggerating my symptoms. They are not in my head. They are real. I worry for me and the long term effects. I worry for those who are in my shoes. I worry for those who don’t even know they are still being impacted and may be home suffering and thinking it's just happening to them (which is what I thought at first).
The sad part is the doctors don't know. They don't know what they are looking for when we show up with symptoms that defy all tests. Locally, there is one clinic that I know of in New York City at Mount Sinai that's treating people with post Covid-19 symptoms. I haven’t made it there as yet. City traveling is a stressor I don't need at this time. Where are the local clinics? They need to go up and go up fast. Where is the publicity? What are the hospitals doing? What is the government doing? Where are the regulations for health insurance coverage and companies? What about the copay each time one has to go to the doctor which is a deterrent and will prevent folks from seeking medical care.
The sadder part is that there are people who still believe that this virus is a hoax and so Covid-19 will continue to spread to much more than the 6.5 million positive cases; more people will die than the current 194,000 and more and more people will end up as long haulers, numbers unknown.
The saddest part is if nothing is done, we, long haulers, will become a drain on the health care system. We will become liabilities to our families. We may lose our jobs because employers may be ignorant and not understand the long lasting effects of Covid-19; some employers will not care because of the bottom line. Some of us will end up on disability as our conditions worsen. Some will become isolated. People will reject us, fearing we are still infected and they may catch whatever we have. Some of us will die. It is no different than troops dying years after from Agent Orange or people being sickened and dying years after from the devastating effect of 9/11.
I am shouting from the mountain top to any and every one who can hear me and any and every one who will listen.
Do something! Now. Please. Now.
Charts above were taken from the Survivor Corps Facebook page
WOW Heather you certainly did a thorough research on this and I hope your concerns are heard and something gets done regarding this sad situation of post Covid-19 sufferers. I pray that it will.
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