Monica
After 17 weeks of unexplainable, ongoing symptoms, Monica was diagnosed with COVID-induced lupus and is still fighting for workmen's compensation despite catching COVID at work.
WATERBURY, CONNECTICUT: I have been a nurse for half of my life, there is no other job I’d rather do. I grew up in a family filled with healthcare workers, APRN, RNs, MDs, you name it. During the HIV pandemic, my mother was specializing in infectious diseases. I remember clearly the pain in her eyes and the conversations around the table when her friends came over to study and fellowship. I knew they were heroes, but I couldn’t understand how a hero could hurt so much.
At 46, I am the oldest hemodialysis nurse in my clinic. My job is to put huge needles into people and circulate their blood. Difficult patients are the ones I love most. I’m telling you, if they come in with shackles and police, please give them to me. I got it. I'm going to take care of them. The day human pain and suffering stops bothering me, I will get a job at Walmart.
The day human pain and suffering stops bothering me, I will get a job at Walmart.
The first week of March, we had our first two COVID-19 positive cases in my clinic. From that week on, the patients needed to wear a mask themselves. We opened up a shift for patients under investigation (PUI) for COVID-19 -- meaning they were positive or were waiting for their tests. I volunteered to work for that shift over 60 hours a week. Yes, I volunteered!!
Armed with a surgical mask, face shield and gown (no N95), we began the journey. At home, I began social distancing from the first case. You see, I am a single mother of two, and we are usually very close. That had to stop. I was wearing my mask everywhere, and unsuspecting people would murmur behind my back.
In mid-April, one of my favorite patients, who only allows me to handle his needles for his 4.5-hour treatment, came in during COVID-19 hours. He looked terrible. When I listened to his lungs, I heard a very peculiar sound. His eyes were almost shut. He could barely speak. He was exhausted and very irritable. I knew he was positive.
Over those 4.5 hours, I was with him every 10 minutes because he kept getting very anxious, taking off his mask and coughing all over the place. He was freezing so I covered him up. If the cover came off, I put it right back on him. When he took his mask off, I put it back on. I was wearing a face shield, a surgical mask, gloves, and two regular gowns — one with the buttons in the front and one with the buttons at the back. However, at some point when I was taking off his needles, I had very close contact for a good 10 minutes. I wasn't wearing an N95, and he kept taking his mask off. At that moment, there was no saving grace.
I had very close contact for a good 10 minutes. I wasn't wearing an N95, and he kept taking his mask off. At that moment, there was no saving grace.
Seventy-two hours later, I started to feel crummy. The fourth day, I went to sleep and woke up at three o'clock in the morning, sweating so much that my bed was wet. Every muscle felt like someone was twisting my arms. I couldn't stop shivering. My daughter came into the room and I told her to leave because I might have COVID-19. At 3:00AM I called my supervisor to find me a replacement for my 5:45AM shift and told him, “I think I got it.”
Per protocol, they sent me to get tested. I couldn’t drive, so my boyfriend took me. The line was three hours long. During that period, apparently, I passed out three times. He bought me a Puerto Rican coffee, which is stronger than Dunkin, and I couldn’t even smell or taste it.
The next morning, the administrator at my job called to tell me I was positive!!! Fear set in, and so did chest pain, difficulty breathing, extreme exhaustion, horrible vivid nightmares, fevers of 104.5, and every muscle ached. From there it kept on getting worse. I was hospitalized twice and tested positive for over five weeks. While in the hospital, they tried to give me Hydroxychloroquine, which I denied.
I was so worried about dying that I actually brought the deed to my home to the hospital. Going through all this made me think of writing a will in the name of my children so I called my lawyer and made sure that everything would go to them, and they would be well taken care of.
I knew a Pulmonologist and called him to the hospital. After going through my reports he told me that I am allergic to morphine and cannot go for intubation. So, he prescribed me oxygen, asked me to blow at least 10 times an hour in the incentive spirometer, and to walk around the room to breathe, which was very painful.
After two weeks, I was under tremendous pressure to go back to work. They were not even testing to see if I was negative, per CDC guidelines at the time. They said, “If you are fever free and not coughing, then you can get back to work.” I asked my administrator to sign a paper that I would sign too, which stated that I may be negative but haven’t fully recovered and the clinic has not tested me therefore I am also putting all of my patients who could die at risk.
They were not even testing to see if I was negative, per CDC guidelines at the time. They said, “If you are fever free and not coughing, then you can get back to work.”
I went to work and after four hours apparently I just blacked out. I don't remember what happened. But, I was told all the color left my body and I fell on the floor. I woke up in the hospital feeling horribly tired, like I was underwater looking from above. The doctor told me that I hadn’t recovered well enough to go back to work. After that, my administrator stopped forcing me to go to the clinic.
The second time I tried going back to work was on May 28th because I tested negative on May 23rd. After working for five hours, it happened again. I couldn’t breathe or move and had low blood pressure. I was taken off the schedule.
The hardest part has been the aftermath.
The hardest part has been the aftermath. COVID-19 is not a two-week thing. It's been 12 weeks for me so far. My hair was down to my waist. It started falling out and became completely grey so my daughter dyed it the craziest color she could find in the store and my niece cut it halfway. I still can't smell anything. My left arm is useless. It hurts and my nails go purple sometimes. I sometimes need help putting on a bra. I try not to go downstairs. I have everything I need in my room. I used to love my room but now it seems like a prison.
I used to love my room but now it seems like a prison.
The worst part now is not the symptoms, but the fact that I did not receive a dime from work, or unemployment while I was out sick. At first, I was paid by worker’s compensation but they dropped me because COVID is considered a two-week disease. I was also not eligible for unemployment compensation because I was not unemployed — just not able to do my job. I filed a case against this. I also wrote letters to the governor, my Congresswoman, my Senator, and my representative but I don't know if anybody will do anything. My lawyer asked me for 10 years of medical history because they don’t think that my illness is related to COVID. My case was seen in court. At the time, the workmen’s compensation commissioner for the State of Connecticut ordered payment. However, we are still to this day fighting in court. I believe that they refuse to recognize long-haulers.
At first, I was paid by worker’s compensation but they dropped me because COVID is considered a two-week disease.
So little is known about this virus, that I felt like I was crazy sometimes until I found a Post-COVID Clinic run by Mt. Sinai Hospital in New York City. I became a patient in June, shortly after they opened. It was the first time that I felt validated. The doctors told me that they’ve been seeing a lot of this and that I’m not alone. In August I had a follow-up appointment at Mount Sinai where we discussed very specific testing results and I received some perplexing news. I was diagnosed with COVID induced Lupus. They started me on medication, hoping that I can get back to baseline.
I was diagnosed with COVID induced Lupus.
I returned to work last week. I’m having a really difficult time doing my very fast paced job. I have had to leave work early a number of times. My joints ache, and I become very shaky. My boss is trying really hard to find me a position within the company that’s not so taxing on my body.
I wish my story had a beautiful ending, but in reality, it has an uncertainty worthy of fear. I believe it has changed the very essence of me. Life will still go on. I'm just going through a really bad time right now, but this will also get over.
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SYMPTOMS: Muscle pains, fever, pneumonia, loss of smell and taste, exhaustion, hair loss, brain fog, blurry vision, fatigue, low blood pressure, joint pains (specially my left arm)
TREATMENT: Incentive spirometer, Tylenol for the fever, cough suppressant, Lovenox.
COPING MECHANISM: My friends and family, my coworkers. They check on me constantly. I also found a support group on Facebook
Monica is a 46 year old, Puerto Rican hemodialysis nurse in Connecticut.