‘The first words out of my mouth were, ‘Am I dying?’ I had NO IDEA what it meant.’: COVID long hauler adopts ‘attitude of gratefulness’ in recovery journey

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“What can I say? COVID changed my life. I’m a super active, now 35-year-old woman who loves to move, and after I had COVID, moving hurts.

I had COVID last April; it lasted four days. I had the body chills, fever, headache, and I lost my sense of taste and smell for about a month—this had been the toughest, weirdest part of having COVID. One day, I even poured too much hot sauce on my delicious Roberta’s pizza to see if I could taste ANYTHING at all, to only wake up the next day to burned lips. I put too much sauce, I guess.

But the greatest aftermath of having had COVID started around June, when my left index finger started hurting and it started to swell, literally out of NOwhere. I’m a tough cookie, so I didn’t make a big deal out of it for awhile—until it had been a couple months of persistent pain.

Courtesy of Stephanie Alves Santos

I could no longer bend it, and at times there was a sensitivity level so high to the point the slightest brush against a hand towel sent my eyes rolling in pain. I had to adjust how I maneuvered doing everything: zipping my jeans, holding my camera, washing my hands.

It got super aggravating, and now my left elbow had started to ache, so I finally went to the ER. There, the intern asked me questions trying to solve the puzzle: ‘Okay, so you’re a photographer, show me how you hold your camera,’ and, ‘You said you smoke cigars, have you burned your finger?’ Nope, that wasn’t it.

When the residing physician got the X-rays back, she said, ‘There’s no deformity on the finger bone, which is good news. I suspect you have rheumatoid arthritis.’ I went home numb, stunned. Again, I’m in my mid-30s, with no family history of RA. I went to see my doctor, who ran blood tests.

After a few days, he called me with the results after I had wrapped a shoot. He told me the rheumatoid factor in my blood was 762, and the normal amount is less than 12. The next words out of my mouth were, ‘Am I dying?’ I really had no idea what any of this meant.

Courtesy of Stephanie Alves Santos

He then sent me to see a rheumatologist, Dr. Green, to whom I am so grateful for his care. He ordered more tests and concluded I don’t have RA, and explained to me a high rheumatoid factor in the blood does not always mean RA; people with levels much lower than mine indeed have RA, but my case was inflammation. By now, the back of my knees and bottom of my feet had started hurting.

This was affecting my psyche. At the time I had a loft bed, and it hurt SO BADLY to come down the ladder every morning, to the point where I’d dread getting out of bed, something that’s never been my case. Six years ago, I named my photography business ‘Morning Bird Photography,’ as that’s a very poignant aspect about me. I loved to start a new day and jump out of bed onto my yoga mat or into my jogging shoes. This was getting me down.

Dr. Green prescribed me to go to occupational therapy, and also meds to help with pain. I never missed one OT session, but the meds I would only resort to when the pain was unbearable. It was now January of 2021, and the 20 OT sessions had really helped. I regained a lot of range of motion in my left elbow. And my finger? The one I couldn’t put inside my pocket or I’d bite my lip in pain? I could now use to play the guitar again!!! This was major progress, and I was beyond grateful to Dr. Beata, who worked with me.

Courtesy of Stephanie Alves Santos

It’s now April, my index finger, though nowhere in pain like it once was, is still swollen. My left elbow is back to hurting, and so is the bottom of my feet, the back of my knees, the bone on my neck, and now other fingers are rigid and click when I open and close my hands.

I met with Dr. Calpone, a podiatrist who, after checking my medical history and test results, was also convinced this was a post-COVID case. He was also so great and sympathized with the toll on my psyche all the physical pain had caused, and encouraged me to be strong in the mind and to overpower the stiffness in my body by staying active. To keep on moving, to walk 2-3 miles a day, and to drink at least a gallon of water per day.

Courtesy of Stephanie Alves Santos

I’m at a point now where mind over matter is tantamount. It scares me my left elbow is in constant pain and visibly not as straight as the other, and now the other elbow has started hurting, too. I wake up and the joint aches are in so many places and I hate it.

Nonetheless, I’m still the person who loves mornings and is an optimist and believes in healing. Who wants to wakes up grateful, not resentful, for a new day of life, and who wants to have a smile on my face. So I take deep breaths, and if a wave of despair or melancholy rushes in, I’ve learned to pick my next thought and remind myself I will be okay.

I have things I can do to ease the current discomfort, so I put my feet on the ground and start my day. I love feeling the endorphins from a good workout, even if now I have to modify certain moves so my elbow or feet won’t hurt too much. I have also learned to work through the pain and to trust the process of recovery. But I have decided an attitude of gratitude is what I will land on.”

Courtesy of Stephanie Alves Santos

This story was submitted to Love What Matters by Stephanie Alves Santos of Brooklyn, NYC. You can follow her journey on Instagram and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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