Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

Turtle Steps

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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

Aftermath

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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

Prepping

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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

Calculated Risks

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One year ago this past weekend, I was in Philadelphia, visiting our younger daughter. The world was just shutting down, but I made a decision to go, anyway, after consulting with my rheumatologist about Covid risks. Knowing what we do now, I may have made a different assessment. But I’m profoundly glad I went, for both of us. I was careful, we had a wonderful visit, and it made the ensuing months of separation somewhat easier to bear.

Every day, throughout this very long year, we’ve all had to make choices about risk of exposure to this deadly virus. I am profoundly grateful that our family has avoided any serious cases of Covid (so far—please, God, may it stay that way), although at least one of our relatives, who is a physician, probably contracted the virus early on, even as tests back then were negative. I still wonder if the very odd virus I caught at the end of January 2020 after attending a large celebration may have been Covid, because it swept through my entire system, drained me out, and took me three weeks to recover. When I mentioned symptoms at the time to one of my health care providers, she had no reference point.

Since I’ve been working for myself from home for 11 years, now, the transition to Covid Time has been relatively seamless. I’m an introvert at heart and do not feel the intense longing for in-person social gatherings that others express, even as I empathize. I find shopping in stores stressful and the masking hard on my breathing, given my decreased lung capacity from scleroderma. So my solution has been to shop online when possible and get out in the real world primarily by taking walks. Restaurants are still out of the question, as far as I’m concerned, and after the new variants emerged, I postponed a haircut until I’m fully vaccinated. Zoom meetings and FaceTime have long been part of my repertoire and make a huge difference in feeling connected to family and friends. As for doctor’s appointments, I consider telemedicine to be one of the true silver linings of this awful year.

For a while, when the weather was still warm enough, I enjoyed visiting outdoors with family and friends, safely distanced. I look forward to starting that up again in coming weeks. We have traveled once, last November, to Cape Cod, for a Covid-safe weekend at a B&B near the ocean. It was uplifting to walk the shore, but meals were a hassle, and it was not relaxing for me. The stress of all the precautions dampened the joy I usually experience by getting away. Still, it was worth it to see what’s possible.

Now I’m one week away from my second Moderna vaccine, a miracle. My Boston Medical rheumatologist told me last week that I’m already about 80 percent protected, and I’m beginning to feel my fear of this scourge easing. Nonetheless, I will still continue to err on the side of caution, until we know more about the variants and how the Moderna vaccine does or doesn’t protect against what may be deadlier strains. I expect to need a booster sometime later in the summer, and will gladly get that, as well.

Then, and only then, will I feel safe enough to fully re-engage with the world. In the meantime, I’m starting to dream again about travel. A year after my last plane flight, it at last feels possible, again.

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.

Mud Puddles

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I read somewhere that March 2020 came in like a lion and stayed. So here we are, a very long and difficult year later, and the wind is gusting outside. I take a walk on a late Monday afternoon, before the sun sets, and the chill catches me by surprise. But I keep on walking. My flannel winter mask helps to warm the air I breathe.

When there’s no one else nearby, I lower my mask to inhale more freely. As soon as I see or hear someone approaching, I raise it again. I’ve gotten quite adept at moving to the opposite side of the street as another walker appears along my path. It’s all part of our learned choreography in Covid Time.

Most people I pass wear masks, too. And most everyone waves or says hello—more so than in the Before Time, when we took passersby for granted. Now, it feels all the more important to acknowledge each other when we can see only eyes.

Where snow is finally receding, mud puddles glisten in the late afternoon light. The ground looks like chocolate pudding. I inhale the earthy scent and notice a few matted blades of green where lawns have emerged from beneath their white blankets. Mourning doves coo as shadows grow long.

It’s after five o’clock when I return home, grateful for a warm kitchen, but glad that I stretched my legs and worked out the strain in my lower back from sitting too long at my computer. The sun still illuminates scudding clouds with a golden glow. I marvel that I can walk this late in daylight.

Spring is less than three weeks away, March 20. Three days later, I get my second Moderna vaccine. Then comes Passover. I mark time with ancient rituals, miraculous milestones, and the spinning of the Earth.

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: Jock Ocularic