During the first week of March, we, like most Americans, experienced COVID-19 in a detached state of mind. My husband & I watched the news from the safety of our living room, like a Netflix movie, as it unfolded on the television each night. First in China, then other European countries, then it was in the United States, but very far away. We were still safe, we thought, in our imaginary cocoon of believing this won’t hit us and only happens to “other people”.
The disease spread exponentially. Our world, like everyone else’s, changed overnight. We began social distancing, obsessively washing our hands, wearing masks, working from home. It inched closer to our home state, then our hometown and eventually our actual home.
This is our story.
It started with a skin rash. Yes. You read that correctly. In mid February 2020 my husband started to complain that he was itchy. We thought he was allergic to something. Possibly a food allergy? For 4 weeks, nothing seemed to work to relieve the symptoms. He was using topical treatments and had gone to the doctor, but it wasn’t going away. Then, on Sunday, 3/22/20—seemingly unrelated—but hindsight is 20/20 as they say– he woke up feeling unwell. Symptoms were vague: fatigue, upset stomach, no appetite. By the next day he had a low-grade fever but was still functional. By this point, the COVID-19 frenzy was all over the news, so to be on the safe side—even though he had no respiratory symptoms—we went to get him tested for COVID-19. The nasal swab came back negative for both COVID-19 and the flu. We breathed a sigh of relief, figuring “it’s just a bug” (also not realizing that the rash was connected).
Five days later, his symptoms were getting worse: the fever was unrelenting—every day, all day long, it was 101.5-101.9; he was sleeping constantly, upwards of 16-20 hours per day, miserable, vomiting multiple times a day, constant nausea, diarrhea, sweating, chills, hypersensitive to smells and no interest in food. Our first thought “maybe it was a false negative? Let’s get tested again” So, at a completely different urgent care—he got tested again. And, once again, the nasal swab came back “negative for COVID-19 & flu”. We then thought “it’s just a really stubborn stomach virus….it will get better.”
By Day #10, we started to get really concerned. Something isn’t right. Maybe this is something else entirely & just bad timing. My thoughts and my heart were racing that this was serious—thinking he had something wrong with his immune system; maybe it was pancreatitis, or a liver disease or God forbid, cancer. If it’s not COVID-19, then what is it?? What else presents with these symptoms?
By day #12, the fever had not broken, the symptoms had not stopped; he kept getting worse. I finally took him to the Emergency Room. A chest x-ray confirmed a diagnosis of “Bilateral [Both lungs] viral pneumonia suspicious for COVID-19” And—for the record: he ironically, once again, tested negative on a nasal swab. He was what they call a “false negative”. He was given all the medications that COVID-19 patients are given, treated for COVID-19 and sent back home. Since he was still able to breathe on his own, they did not want him taking up a hospital bed.
So, we went home. Thank God I have a medical background as an occupational therapist and was able to manage monitoring him. I called friends & family for help to secure a humidifier, oxygen saturation monitor, incentive spirometer, blood pressure cuff. Every hour, all day long, he was quite literally being watched—I had a baby monitor hooked up with video & audio to closely monitor breathing. We socially distanced in our own home, sleeping in separate rooms, staying apart as much as possible except when I had to check him & give him medicine. I prayed like a monk, on my knees, read healing scriptures & stories from the Bible and rallied prayer from every corner of the world and every friend & family member of every spiritual background! We were going to attack this virus from every angle: physically, emotionally and also spiritually.
While my husband slept, I was on-line researching COVID-19 and learned of several studies, already published in JAMA (Journal of the American Medical Association) that confirmed there is a & high percentage of patients in Wuhan, China that tested negative on nasal swabs, yet are positive for COVID-19. In particular, patients that show gastrointestinal symptoms, like my husband. This would make sense since the virus is not in the nose where it would be caught on a nasal swab—it is in the intestines. The only test that would enable a positive reading is a stool test or rectal swab since it would be able to catch the viral shedding from the intestines. This test does not exist yet in the USA—they are only using a nasal swab, which in my humble opinion is missing thousands of potentially infected people and potentially increasing the numbers of people dying. See full article here: https://www.nature.com/articles/s41575-020-0295-7
Furthermore, I learned from research, that COVID-19 can also present with a skin rash & itching. Who knew? A large percentage of patients in a study in Italy presented primarily with skin rashes. See full article here: https://www.the-hospitalist.org/hospitalist/article/220183/coronavirus-updates/skin-manifestations-are-emerging-coronavirus-pandemic
I contacted the CDC, called & emailed the governor’s office, posted on Facebook for others to contact the CDC & local governments—if enough of us are writing in to urge the CDC to approve more invasive (stool & blood) testing, it would allow for earlier detection & potentially save lives. The irony is so many people are walking around with no symptoms and they are positive for COVID-19. And, yet, others are desperately sick with COVID-19 and yet, show a false negative.
By Day #14, after starting medications, getting the right care & lots of prayers, his fever started to break and he had a normal temperature for the first time in two weeks. The nausea, diarrhea, sweating & fever all calmed down, but now, the coughing was much worse—they were fits of uncontrolled coughing, multiple times a day, followed by episodes of vomiting. His throat became very sore and his sense of taste & smell were affected, stating “everything tastes like plastic”. Fatigue & weakness were ever present. A follow up primary doctor appointment provided more medications to manage the symptoms, which, sadly, is all you can manage—viruses run their course. There is no cure yet.
At the time of this writing, we are on Day #21. It has been three weeks since the first onset of gastrointestinal symptoms. We believe we are finally out of the woods & on the road to a full recovery. Each day, he is a little better. He is awake, alert, sitting up most of the day rather than sleeping. And, his smile, sense of humor, along with the light in his eyes & energy level are returning each day. There is still a cough—that may take a while to completely go away, but it is not as violent & terrifying as it was at first. Every day, he is improved a bit from the day before.
My hope & prayer with sharing our story is that it will help save other people’s lives. Since hindsight is 20/20, allow me to share a few viewpoints that may help others going forward:
- Trust your instinct. Despite the fact that the first nasal swab was negative, we intuitively knew that something was wrong. People know their own bodies. My husband had never felt these symptoms before; In 10 years of being together, I had never seen him this sick before. If you have symptoms and are concerned you are positive, you are probably positive—you don’t need a test to prove it, but you will need medical care to get people to take you seriously about your symptoms & get you the medicine you need to manage the symptoms. Call your own doctor—don’t rely on the urgent care sites or testing centers. They are overwhelmed.
- Act quickly. You don’t need to suffer with a fever for 12 days before going to the hospital. Looking back, I should have taken my husband to the hospital after the 1st test was negative, since we intuitively knew something was wrong, rather than waiting so many days and questioning ourselves. He would have gotten medicine sooner and possibly would not have suffered so much or developed life threatening double pneumonia.
- Believe in the power of prayer. No matter what your belief system—whether you call them prayers, good vibes, positive intentions or positive energy—please know: it works. Something deeply powerful happens when you have an army of spiritual warriors lifting you up for healing. There are invisible forces at work and the battle in the unseen world is real–I absolutely believe this with my whole heart. My husband’s dreams were chilling—he had multiple vivid nightmares as if he was truly at death’s door. He was fearing for his life & fighting for his life with this disease. Everyone’s prayers & positive intentions not only helped my husband get well—they kept me well—all this time and by the grace of God, I don’t have one single symptom & am completely healthy.
Moving forward, as we continue as a society to unite, bond, grieve those we’ve lost, heal & get through these uncertain times, please remember to “speak life”–words are powerful; beliefs are powerful (there are scientific studies proving that beliefs affect biology–it’s real). Buying into the fear & negativity will only breed more negativity. Despite a frightening & potentially life threatening diagnosis, we spoke only life; we believed in healing; we leaned into our faith. We turned off the news; we kept all negativity out and only allowed hope, positive energy & healing in. It worked.
For anyone currently dealing with this COVID-19 sickness; or anxious about getting sick, my parting words are these—please allow me to quote an ancient scripture from a very good book:
“For he will command his angels concerning you to guard you in all your ways.”—Psalm 91:10
Keep yourself safe & well. Have hope. Pray. Reach out to people for support. Trust your instinct and that still, small voice inside your soul that is guiding each step. Listen to it always. It will lead you toward life.