You Are Not Crazy! My Long-Haul Covid-19 Story

I first want to share that this recap has taken me several months to even begin to write. It is the ugliest of times, filled with pain, a long debilitating illness, death, and fear like I’ve never known. As a contributing writer for trade magazines and online publications, I will say, it has never taken me so long to write any article, even prepare for full classes, as it did this one. 

It was 2017, we were planning our wedding while living in South Jersey, when my future husband, Jim, was offered a significant position, in New York City. We were both excited. We could make this work, although we knew many weeks would be long; Monday through Friday without seeing my husband-to-be’s handsome face would be difficult. This was a tremendous opportunity and could be his last huge assignment. Jim would become part of a new destination, called Hudson Yards, and would be changing the skyline of Manhattan, forever! This was thrilling for him.  

The plan was, I would remain in New Jersey, tend to my business, he would spend at least, the next five-years in New York, and we would take turns on the weekends going back and forth. 

We found a great apartment, a breathtaking view, walking distance from the theatre district, surrounded by countless restaurants, art shows, what more could we ask for? I even lost weight after spending weekends there, from the amount of walking I did. I felt so healthy! 

If we got lonely being apart on the long weeks, Jim could appease me by telling me his plans to take me to many of the European countries when he had to purchase stone for his building. He couldn’t wait to show me the quarries. I couldn’t wait to go! In the interim, we entertained family and friends on many of the New York weekends.

Time was going quickly and there were many exciting opening events taking place at Hudson Yards. Jim’s building was about to come out of the ground, famous chef, José Andrés, had the grand opening of his authentic Spanish Restaurant, Mercado, and mid-March of 2020, The Edge, was about to celebrate their opening celebration. The Edge is the glass triangle that hangs off the 100th floor of 30 Hudson Yards, where many entertainers have performed. Jim, being a VP, attended. That was the last of the big celebrations. New York City was about to shut down. Jim came home after that weekend, and we both came down with Covid-19, and my life has never been the same. 

Jim’s onset was debilitating as was mine, but as the weeks went by, Jim was coming out of it. He had a slight fever that broke in just a few days. I never had a fever. Although the city had shut down and Jim was home, I can’t say I remember or enjoyed being together during those months. I was too sick, too weak, and the headaches and brain fog were blinding. Then, while New York City was still shut down and riots and looting were raging, Jim was called back to work. Construction was considered a necessity. He was home on weekends, and I remember, through this dense haze, I would stare at him and wonder how and why he was functioning, and I still wasn’t able to. I remember thanking God for keeping him safe from the riots and dangerous streets and bringing him home every weekend. 

I felt I was living the movie, Groundhog Day. I woke to the same achy body and stupor, every single day. I never knew what day it was and often not even the month. In the midst, I awoke one morning and was unable to hear. I didn’t even want to say it out loud, hoping it was going to pass. Maybe I had residual water in my ears from showering? But I knew that wasn’t the case. It lasted for two weeks. Suddenly, I could hear. What was that?

I lived in pajamas and would be embarrassed when my husband came home and that’s all he saw. He was incredibly understanding, but I felt so helpless, which made me feel even worse. It’s so difficult to explain the emotional state I was in going through this. I was embarrassed, guilt-ridden, and felt completely useless and helpless. Remember, no one knew anything about this virus, back in 2020.  No one could possibly understand that this something, that had hold of my body and mind, would not let go. 

A dear friend was not feeling well and had no idea how seriously ill he was. Living in the city, he walked to the nearest hospital and was quickly diagnosed with Covid-19. He fought so hard for 13 days before he died. It rocked southern New Jersey and the Philadelphia area and losing his philanthropy was a critical blow. Meanwhile, I was still reading smug comments and questions on Facebook asking if anyone actually knew of a real person who had Covid-19. I attended this friend’s virtual funeral in my robe.  

I was having issues with my joints. They all began to hurt, not ache, but hurt. Sharp pains would shoot through my legs and knees when I got up to walk. Suddenly, I could not walk across the living room floor. The pain was excruciating. I remember looking at Jim, and saying, I can’t walk! What’s happening? 

I saw my orthopedic surgeon. She ordered x-rays, and either a Cat scan or MRI, I can’t remember which, and bloodwork. I remember the sympathetic expression she had when she told me, everything was terribly inflamed. She said she never saw anything so confusing as the results of my bloodwork. It was all over the place. Some levels would begin to point toward rheumatoid arthritis and the next levels would prove it wrong. She did rule out rheumatoid arthritis, but felt badly she didn’t have more answers to offer me. This expression on the faces of medical professionals was about to become a pattern.

Meanwhile, I hadn’t moved off the sofa in months. How did I become so inflamed? How? 

I was a good 6-months from my initial diagnosis. My company reopened, my wonderful staff had returned, but I wasn’t able to be there. The fatigue was still paralyzing. 

The brain fog was blindingly thick, and all thoughts were muddied. It was with great effort I struggled to write an article, yet alone prepare for a new class. Finding simple words was a major effort. It literally made my head hurt.

Once again, my hearing was gone. It came on suddenly as before, only this time, it was accompanied by severe ear pain, debilitating headaches, and vertigo. I don’t get earaches, headaches, or vertigo. It was devastating. One of my many doctors, (I was so tired of doctor’s appointments that failed to provide solutions), said I had an infection in my Eustachian tube. I’m not blaming doctors for not knowing. Even Dr. Fauci wouldn’t have had an answer to all these things. No one had any answers. Antibiotics took a while to clear up the infection and my hearing returned. 

In December, 2020, nine months following my diagnosis, I was dreading the holidays. I had no energy to prepare. I love Christmas, but I just wanted it to be January.  I began to have trouble breathing and developed a cough. I felt as though something was sitting on my chest. I called my pulmonary doctor, had an x-ray, and was diagnosed with pneumonia. I hadn’t left the house since last March; how could that be? Where did I get it? Worse yet, I was told it required a lung wash and biopsy by a pulmonary surgeon, in order to identify the type of pneumonia and treat it properly. This also required anesthesia and the risks of a bleed. I was not happy to hear this, but had no way out. Needless to say, my family wasn’t sure if I could fight this. I could hear the fear in their voices and see the fear in my husband’s eyes. My pulmonologist, who was so concerned, apologized to me for not being able to help me more. I have been blessed with the best and most caring doctors in every specialty. 

January 2021, I had the procedure. The ’wash’ left me with the deepest, most rattling cough I have ever experienced. It literally shook my entire body and lasted for weeks, leaving me with pain in my ribs, upper back, and abdominal muscles. The culture grew and the doctors were able to prescribe the appropriate antibiotic. The procedure really took a lot out of me, with barely anything to make it bearable. It appeared my lungs had suffered the worst damage. 

February 2021, I had my first Covid19 vaccine. I didn’t become reactive.

March 2021, one year from diagnosis, and I could not see the light at the end of this Covid Tunnel. I was embarrassed to even discuss the strange and bizarre symptoms I was experiencing, for fear I would be considered a hypochondriac. I didn’t even want to say them out loud. My entire life, I was described as being strong, and having extraordinary energy. My body was no longer my own. At this time, it belonged to Covid-19.

It continued to play havoc in my body. I would wake up to my wrists hurting so badly, I couldn’t bend them. How was I ever going to work? Another day, it would be back pain, where I couldn’t straighten up. These strange attacks could last for days to weeks. Then the pain would go back to my knees, like a homing pigeon. 

I decided to see a holistic, naturopathic doctor. I had seen him more than 25-years ago to treat me for chronic Epstein Barr. He and my family doctor pulled me out of it. I had been forced to sell my practice and was able to purchase it back one year later, after getting back on my feet. 

My appointment could not come fast enough, and it was everything I had hoped for. Twenty-three vials of blood gave this doctor a clear picture of where the virus was hiding. He was astute in prescribing the right medications to battle the virus, most of which were off-label and not covered by my insurance. I attribute much of my recovery to a drug referred to as, LDN, Low Dose Naltrexone. To explain off-label, this drug was initially developed to block opioids, and somehow it was discovered that it has the ability to boost the immune system and could provide support in treating most auto-immune viruses and diseases.  

Along with several other immune system builders, I slowly began to feel myself. I was so grateful! I woke each day giving thanks. I was doubting if it would ever happen again.

No sooner I had this glimpse of relief, I had the second Covid-19 vaccine and became terribly ill. I could not lift myself from the bed. Every initial Covid-19 symptom returned with a vengeance. My family thought this was the end. Did this vaccine incite a cytokine storm? 

I had heard of a study, months prior at the University of Pennsylvania, for those that had Covid-19, clinging to them, as I did. They even gave them a name, Long-Haulers. I was placed on their months long, list. My telephone appointment was a few days away when I received notice, I was cancelled. I was quite upset. I called back to remind them I had waited months and that this appointment was so desperately needed. They heard my desperation and arranged for a call within the next few days. 

Two pulmonary surgeons were on this call with me for more than an hour, asking me dozens of questions and listening intently to my responses describing many bizarre symptoms. They were wonderful and truly concerned. I was not expecting a cure or even a solution. I knew the same studies were going on and had been televised from New York’s Mount Sinai Hospital, and they clearly stated at the end, there were no solutions. I simply wanted to be in a data base that collected information so in the event they came up with a resolution for any one of my symptoms, I would benefit. 

These doctors explained that the second Covid vaccine, was actually giving me a third exposure to Covid-19. My body was flooded with antibodies, far too many, and it made me sick. They also explained a lot of what they had heard from other patients and yes, I felt a bit more normal, but certainly not better. 

They highly recommended I see the appropriate specialist for each major organ to be sure they were functioning properly and not affected by Covid-19. I only have one kidney, since I was a donor for my son, so I should begin there. They also felt strongly I would return to how I was feeling before the second vaccine, eventually. They were happy hearing I had gotten relief from the medications the holistic doctor had given me. After about three weeks, the symptoms from the second vaccine began to subside. 

From April until mid June, I was just about myself. The brain fog was finally lifting, I was going into my institute writing articles, cleaning closets, organizing, etc. Then, I got a call from my daughter-in-law that my son, Chris, was admitted to the hospital. It was a minor procedure, but having a renal disease for 36 of his 50-years, four kidney transplants that failed, too many years on dialysis, and a stroke, nothing was really minor. There were complications. After he coded three times in three days, we lost Chris. This new pain was indescribable! 

Everything that had to be done for Chris, we did together. Being together was our only comfort. My concerns shifted to my newly widowed daughter-in-law and son, Marc, Chris’s brother. They were overcome with grief. Our family and friends and Chris’s many friends continue to tell us that his service was one of the most beautiful services they had ever experienced. It was truly a celebration of his astonishing life and how he managed to touch so many lives, so deeply, while championing countless life-threatening incidents. 

I held up for my family, as I had tried to do for the duration of Chris’s illness. My amazing staff continued to hold everything together at my institute. 

Nephrology, urology, checked out, now cardiology. I chose to see a cardiologist that was a support beam for our family when Chris had a stroke, ten years prior. He asked me to explain my Covid-19 symptoms, no matter how seemingly strange they were. I did. He wanted to know everything. Then, he asked if I knew his story. I did not. He explained he was on the news, in the papers and ultimately a documentary was made on his bout with Covid-19 and ultimately, the stroke it caused him to have. He had that familiar, vacuous look in his eyes that I had just a few months back. My heart broke for him. He explained that he still battled brain fog and fatigue. I told him how effective my holistic treatment was. I don’t know if he ever pursued this treatment. I pray for him, every day. He is a philanthropist, husband, father to five children and his medical life is committed to prevention. He donated hundreds of blood pressure cuffs to barber shops, beauty salons, and churches to alert people to dangerously high blood pressure readings and for them to seek medical attention, immediately, if this was the case. 

All the other specialists checked out and I remained on my holistic medications and held steady until, mid-August. Suddenly, there was a big dip in my energy and stamina. I wasn’t sure why or what was happening. 

My stress level had increased dramatically, at work, due to some personality issues, so, as soon as things calmed down, I decided to take a two-week vacation. I’m learning to decide what’s best for me. I felt run down and my nerves were terribly on edge. I wanted to be alone physically, mentally, and emotionally, to process and assess my present state as well as simply cry when I wanted to, as I missed my son, terribly. 

Again, I started with a wicked headache. I slept the first two days straight of my vacation, but felt no better for it. I was weak and couldn’t seem to cut through the fog in my head nor the headache. The third day, my sinuses were draining a strange and viscous substance. Using my phone light, I was sickened at what I saw. It was obviously an infection, but not like one I had ever seen before. I was frightened. 

As I stood up, I noticed a large red spot on my leg. Already shaken, I turned my leg to the side and there were two more and one on the other leg and another large spot above my ribs. I am not one that ever had rashes and this was not something I had ever seen on my children or any of my clients. 

Although, I was now, 18 months from Covid-19 diagnosis, I felt immediately it could be Covid-19 related. I opened my iPad to Google, typed in Covid-19 rashes, and there it was, unmistakable! I was frozen and found myself just staring at the screen. Worst yet, as I read, it got worse, saying these sinus infections and the Covid-19 rash occur in immunosuppressed individuals. Most likely polyps formed from Covid-19, that will require surgery for removal, since this type of sinus infection will continue to recur. What??? There was nothing to treat the rash other than Cortaid cream. The sinus infection required an anti-fungal and antibiotic. 

I sent photos to my family doctor, and she agreed to treat the sinus infection, providing I made an appointment with a specialist, right away. The rash continued to worsen but just for a few more days. I just have red circles, marking where they were. I was sweating this one! I had no idea where it would stop. 

I will see the ear, nose and throat specialist in two weeks, and I pray I am not part of that statistic. 

The most frustrating part of contracting Covid-19 has been its unpredictability. It truly is insidious. It has many guises and surprises. I do believe that stress played a part in this episode. I fully intend to practice meditation and bring more relaxation into my life. I feel as though, if I do my part for my mind and body, I stand a much better chance of this virus not rearing its ugly head.   

My message to those that are Long-Haulers: you are not crazy, nor are you a hypochondriac. Share your symptoms with all of your doctors. They want to know! This is how they will come to better understand Covid-19 or possibly the Delta variant. I cannot tell you that I am comfortable complaining out loud. This is certainly not my MO and anyone who knows me knows this very well. However, I felt compelled to write this, putting my own feelings aside because it needs to be told. 

Be proactive! Seek any type of help and advice you can get. Don’t stop! Don’t accept it! If I did, I wouldn’t have the capacity to tell you about my experience.