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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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COVID-19

This Is a Test

Evelyn Herwitz · May 25, 2021 · 4 Comments

Last week, our home became a testing ground for the efficacy of Covid vaccines. Al was vaccinated back in February, and I was fully immunized by the first week of April. He got Pfizer, and I got Moderna. We’ve been feeling quite confident and relieved since then, although we both still mask in public, as required.

However, for much of April and May, Al has been coughing. At first, I thought it was just a morning thing, but right after Mother’s Day, his cough got worse. By the next weekend, he was clearly not feeling well. No fever, but I suspected bronchitis. So a week ago Monday, he went to the doctor. Sure enough, he had Covid. While he could walk outside and even ride his bike if he wanted, he could not be around other people (except me) and had to work from home.

I, in turn, had a Covid test the day after Al was diagnosed, and was—thank goodness—negative. I took over all the grocery shopping, errands, and meal prep, which we usually share. I’ve felt fine the whole time.

Fortunately, his symptoms steadily improved. He never lost his sense of smell or taste. As all the research has shown so far, the vaccine most likely spared him from a severe case of the virus. By the end of the week, he was hardly coughing at all, and yesterday, he was cleared to be out of self-quarantine.

He was called twice by the Massachusetts Covid contact tracing team, to see how he was doing. We had already notified everyone we had been in contact with in the recent past. But I was impressed by their follow-up and grateful that we have a good system in place here.

So, how is it that Al caught the virus, even though he was fully immunized? Chances are because he doesn’t have a spleen, which is a critical organ in the body’s immune system. Years ago, when we were first married, he contracted a severe case of mononucleosis—not a terribly big deal for young people, but quite a big deal for a 35-year-old man. His spleen ruptured and had to be surgically removed. He came home from the hospital the day before our first wedding anniversary.

While bone marrow compensates for the spleen in a case like Al’s, I am making an educated guess (no research at present to define the relationship between lack of a spleen and Covid vaccine efficacy) that he probably has not been able to produce the full level of antibodies in response to the vaccine. However, current research does indicate that even in breakthrough cases like Al’s, he both had a milder case and also shed less of the virus because he was fully vaccinated. And apparently, my vaccinations have given me enough protection for whatever I was exposed to. Thank God.

I shudder to think what might have happened if he had be infected before being vaccinated. He is more vulnerable than either of us realized. Which also goes to demonstrate how effective masking and basic public health measures are in protecting us all.

Moral of the story: Vaccines do work, even if not perfectly. We dodged a big bullet. And I am very grateful that we’re both okay, as well as others we saw recently. If you haven’t been vaccinated yet, please—for you own sake and those you love—go get it. And be sure to exercise caution around others who may have compromised immune systems, regardless of your immunization status. We truly are still all in this together.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Mufid Majnun

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: COVID-19, managing chronic disease, resilience

Unfurling

Evelyn Herwitz · April 13, 2021 · Leave a Comment

This past weekend, pastels proliferated. The temperature soared to mid 70s F, and Nature saluted with pink cherry blossoms and lemony forsythias, lavender violets and purple hyacinths. Within a few hours, nascent, chartreuse leaves unfurled to greet the sun. Glorious.

I’ve always loved spring in New England, when it finally arrives. Even as temperatures stutter for a few weeks in April, sometimes into May, the longer daylight hours and luminous garden palette lift my spirits. Watching the tree canopy expand each day never ceases to fascinate. Even the yellow pollen that will soon dust car windshields is a reminder of renewal.

All the more so as we emerge from Covid, step by cautious step. With vaccinations increasing every day here in the U.S., I’m beginning to feel my optimism reviving, too.

I got a real boost last Tuesday, the day I was fully immunized, when I finally got my hair cut again after a four month hiatus waiting to be vaccinated. It had definitely gone wild. Every morning, when I looked in the mirror, I was reminded of Albert Einstein. But given that my hair was longer than it’s been in decades, I decided to ask my stylist to shape it a bit fuller this time. After all, might as well make the most of it.

She did. I was so happy when I left the salon, I felt like a new woman. That mood carried me for the rest of the week and still lingers. Carpe diem.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

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Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience

Turtle Steps

Evelyn Herwitz · April 6, 2021 · Leave a Comment

I had to take myself by the hand to get outside on Monday afternoon. Not because it wasn’t sunny, because it was. Or really too cold, because it was 57°F, though there was a brisk breeze. Or same-old-same-old, because there was plenty to see—daffodils, crocuses, even some hyacinths in bloom; the crimson and chartreuse hint of new foliage on street maples; our neighbor’s fairy garden, which changes themes every few weeks. This afternoon, it featured painted eggs encircled by multi-colored pebbles.

No, my resistance was mainly to the idea of just getting up out of my chair and stepping out of my nice, warm house. Even as I am officially two weeks past my second Moderna vaccination as of Tuesday midday, it’s hard to shake my Covid habits of seclusion.

On Sunday, Al and I took a hike at a local state park, and I realized that it had been weeks since we’d gone out in the woods together. It’s been too cold or I’ve been too tired or just not inspired. As I walked around our neighborhood on Monday, it suddenly struck me that this was the first winter in decades that I have not put snow tires on my car. I simply haven’t needed them, because I haven’t been driving much at all. Introvert that I am, I’ve managed just fine working at home, as I have for the past decade, Zooming only online, and otherwise slowing way down when it comes to socializing.

But now, with spring and vaccines and longer daylight once again, getting out seems more possible. We have a weekend getaway planned for my birthday soon. I’m starting to daydream about more extensive travel in the fall, when we know more about variants and how long the vaccines protect us.

At the same time, I find myself hesitating. I’ve been living in my turtle shell for so many months, even with sporadic, small outings to see my doctors in person, or for occasional errands or hikes, that the idea of actually going out daily, like I used to, seems a bit intimidating. Will it really be safe? Do I want to expend all that energy running around again?

Just as I had to acclimate to confinement, I now have to re-acclimate to getting out in public. It will take me some time and practice. And experience, poking out my head, discovering that I can actually stay healthy with more exposure to more people, that I can put up with masking for however long it takes, and that there is still much joy to be found in our troubled, troubled world.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Joshua J. Cotten

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Filed Under: Body, Mind, Sight, Smell Tagged With: COVID-19, managing chronic disease, resilience, travel

Aftermath

Evelyn Herwitz · March 30, 2021 · 2 Comments

One week past my second vaccination dose, one week to go until my COVID-19 immune response is full bore. Here’s how it went:

Getting the shot was a breeze. I found parking right away, not always guaranteed at Boston Medical, and there was no crowd at the clinic. A trainee was working with the nurse who administered my shot, and she engaged me in conversation, so I didn’t even realize I’d received the jab. My nurse recommended taking a photo of my CDC vaccination card and storing it in a safe place as documentation. I overheard another patient saying she planned to get hers laminated, which I thought was a good idea. Everyone was upbeat and wished me well. Very professional.

I drove home without a problem, ate some lunch and even did a little work at my computer. Then, the fatigue fog rolled in, not on “little cat feet” à la Carl Sandburg, more like a herd of elephants. I shut off my iMac, went upstairs, lay down in bed, and binge-watched Downton Abbey for much of the rest of the day. And I slept.

By Wednesday, my joints were flaring. No fever, and I was able to get a few hours of work done. But sitting at the computer became impossible by early afternoon. And my morning energy dissipated like mist. Fortunately, I had cleared my calendar in anticipation of a reaction. Back to bed and more Downton. It has been decades since I’ve spent that much time in bed watching TV because I wasn’t feeling well.

Throughout the day, family and friends kindly checked in to see how I was faring. By evening, about 30 hours after I’d received my dose, I felt the aches and fog lifting. I had done my best to keep hydrating, as the nurse had recommended, so I’m sure it helped some, but I also know my body well, and it always takes time for my system to clear. Just a waiting game.

I slept well again. On Thursday morning, I felt like myself, although I noticed that my left arm felt warm. When I checked in the mirror, I had a huge rash that stretched from where I got the shot to a few inches above my elbow. A little online research turned up a new term, “Covid arm.” This is a non-serious reaction to the shot, more common with Moderna, that can occur up to a week later, on average. Mine was only very mildly itchy and responded well to cortisone cream. I also took a Benadryl tablet that evening, which may or may not have had an effect.

Five days later, the rash is almost gone. I’m looking forward to next Tuesday, when I’m fully immunized. Months ago, when the Covid variants surfaced, I rescheduled my haircut to wait until I was fully vaccinated. Thanks to serendipity, I picked next Tuesday. Taming my four-month-long mop will be a great way to celebrate.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Chris Barbalis

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Filed Under: Body, Mind, Sight, Touch Tagged With: COVID-19, managing chronic disease, mindfulness, resilience

Prepping

Evelyn Herwitz · March 23, 2021 · Leave a Comment

Today I get my second Moderna dose. On Monday, I tried to remember to keep drinking fluids, which is supposed to ease side effects. We shall see.

I’ve also been prepping for the aftermath. Friends and family who’ve had the Moderna vaccine report a whole range of reactions, from some arm pain to brain fog to extreme fatigue to headaches to fever, lasting a day or so. I’ve cleared my calendar for Wednesday, hoping for the best but leaving space and time to deal with a stronger reaction. After my first dose, I was very tired for several hours after I drove home from Boston. We shall see.

Then there’s Passover prep. The first seder is Saturday night this year, and there’s still a lot to do between now and then. We’ve started our house cleaning, shopped for dry goods and dairy foods, and planned menus for the week of Passover. Al will finish the bulk of the cleaning this week and the rest of the shopping for perishables, but I still have client work pending and other to-dos to complete.

I’ve revised the Haggadah that I wrote last year, and we’re getting organized to have a Zoom mini seder with family on the first night. But there is still more cleaning and all the cooking to do. So I’m hoping that my second dose won’t throw a monkey wrench into the works. We shall see.

How is this week before Passover different from all other weeks before Passover? We shall see.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Aron Visuals

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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