Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

Brain Fog

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I forgot to write my blog for Tuesday morning. Completely slipped my mind on Monday, my usual blog-writing time, because I didn’t write it down in my Monday To-Do list. Usually, I organize myself in my bullet journal with a task list for the week, which I then break down for each day. But I’ve been busy with a lot of deadlines hitting at once, and I didn’t do the weekly task list, so I didn’t remember to write my blog.

Which is why, if you’re used to seeing this pop up in your in-box on Tuesday, it wasn’t there. Easy enough to “write it off” to aging, of course. But I had an interesting conversation with my Boston Medical rheumatologist on Tuesday that made me wonder. I was telling him how I feel that my memory just isn’t the same (this was before I realized I hadn’t written my blog, which gave me today’s theme . . . ).

Word-finding when I’m stressed has been hard ever since I hit menopause years ago, so I’m used to that. And we all know what it’s like to go into a room to get something and forget what it was. But now I’m finding that I can think of something I want to do and go to write it down (to remember), but the actual act of writing it makes the idea vanish for seconds or even minutes, sometimes. This is not only frustrating, but for someone who writes for a living and for my art, it’s upsetting. Fortunately, when I am thinking at the keyboard, the words continue to flow easily onto the screen.

Long-term memories are also getting harder to retrieve. Some of this is age, of course. But my maternal grandmother used to tell me stories from her twenties that were vivid with details. I had the same capacity for years, but now it just seems harder to recall long-ago details.

My rheumatologist tells me that brain fog is common with autoimmune disease. In the forty years I’ve had scleroderma, I never knew this. (Or if I did, I forgot!) Some of this has to do, in my case, with how my circulatory system is just not as efficient as it used to be due to the disease, so my brain isn’t as well-profused by blood. I also have Sjögren’s Syndrome as a secondary diagnosis, which causes dryness in my eyes, nose, and mouth, and apparently can also cause brain fog.

I haven’t changed medications in quite a while, other than eliminating a few that weren’t really helping me and cost way too much under Medicare. So this isn’t a reaction to drugs.

What to do? It comes back to the basics: get enough sleep, eat a balanced diet with foods high in omega-3 fatty acids and antioxidents, and exercise. I’m pretty good at the first two, and really need to improve at the latter. Over this past week, I barely got outside because of the cold. So on Tuesday afternoon, after my telemed call with my rheumatologist, I took a brisk walk.

A few hours later, when I finally wrote up my week’s To-Do’s, I remembered that I hadn’t written my blog. So, here I am, a day late. But at least I got here.

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: Phillip Belena

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