Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Covid Redux

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Just in time for 2025, last week Al came down with Covid. He was feeling off Tuesday afternoon and worse by Wednesday evening. What began as a winter head cold deepened into a rough cough, so on Friday he went to urgent care to rule out pneumonia. His lung X-ray was clear, but a Covid test was positive.

We were both stunned. We’d been vaccinated back in September before our trip to Israel and Switzerland, and neither of us had any issues abroad or since our return. I’ve read about the uptick in Covid cases. Still, this one seemed to come out of nowhere.

Paxlovid is helping Al significantly, and his health is, thankfully, improving, although Covid is leaving him easily fatigued. As for me, as of Monday afternoon, I’ve consistently tested negative and have no symptoms. Hope it stays that way, and that my vax still protects me.

The last time I had Covid was in April, just in time for my 70th birthday. That was the second time I contracted it. I really don’t want a third bout. When it comes to this nasty virus, three is certainly not a charm.

So, if you have not yet gotten a Covid vax or a flu vax, for that matter, I hope you’ll do it ASAP. As we head into that inevitable winter season of closed windows and indoor crowds where viruses flourish, there’s all the more reason to be protected. While Al’s experience raises questions about the vaccine’s effectiveness after four months, I’d still favor the odds of it working.

So far, for me, so good.

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: Evgeni Tcherkasski

Resolute

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It’s nearly New Year’s. Already, 2025 looms as an even bigger challenge than 2024. But, we won’t know until we live it.

Which is why, this year, for my resolutions, I have a simple, basic goal. I call it the Three C’s to Strive For:

Inner Calm.

Clarity of mind and purpose.

Courage.

That’s it. I know this will be a constant work in progress. I’m really good at finding lots of things to do to take my mind off what is worrying me. Sometimes this is very productive. Other times, it’s a smokescreen.

How to proceed? I know meditating will help with the first two. Lots of deep breathing. Exercise helps, as well. Limiting my news diet and social media are essential. Writing my novel is essential, too. My acting class, which starts up again mid-January, is a surprising source of focus and clarity.

Courage is a learned skill. My ongoing volunteer work to ensure that our Fair City is able to thrive as it withstands climate change is both a source of uplift as well as an ongoing lesson in how to make a positive difference locally. That’s helped me to become braver in public and to build a team of allies. I hope to keep strengthening those muscles.

Even as I write this, however, I also know that there will be plenty of set-backs and difficulties ahead—but not to let any of that predict what can or will come next.

The only thing that’s real is the moment we’re in. My best wishes to you and your loved ones, Dear Reader, for a healthful, resilient New Year.

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: Oliver Cole

Sleep Tight

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Cold weather makes me want to hibernate. Four days from the winter solstice, I start yawning by mid-afternoon as the sun slips past the trees beyond our home.

Fortunately, the cold weather also makes it easier for me to fall asleep and stay asleep most of the night. I may be jinxing myself by writing this. I sure hope not. Sleep is what’s saving me these days.

I’m also having a lot of very strange dreams. These usually surface just before dawn, when I have to make the inevitable trek to the bathroom. But I’ve been able to drop off again, because it just feels so good to get warm under the covers. And the strange dreams typically dissipate soon after I wake for the day. Which is a good thing. Because they are really strange.

In about a month, daylight will feel longer once more. It will get easier to drive home from Boston on the Mass Pike in the afternoon by late February, when the solar glare going west is less severe. I’ve been noticing buds on the trees and shrubs around our home, always an encouraging sign of new life to come.

And, if I’m lucky, I’ll continue to sleep soundly, regardless of the onslaught of bad news that floods our world. It’s essential to my health and well being, to my resilience and ability to cope. All the more so in such stressful times.

I hope, Dear Reader, that you are sleeping well, too. If you’re struggling, here are some helpful tips from the Mayo Clinic.

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: Daniele Levis Pelusi

That Time of Year

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It’s darker and colder, and winter is definitely on its way here in New England. Most of the leaves have fallen, and the city has swept the streets, so we no longer drive amidst canyons of leaf piles. Halloween witches and Thanksgiving turkeys have given way to Christmas lights and inflatable snowmen.

My fingers are not happy. As the temperature drops and the air gets drier, my skin becomes more fragile and ulcers appear. Right now, there are five: one on my left thumb, a couple on my right thumb, one on the tip of my right index finger, and one on the tip of my right ring finger. I am, as you’ve undoubtedly surmised, right-handed.

The thumb ulcers are nothing new. I have these perpetually, year-round. In fact, I can’t recall when I last was able to go without bandages on either thumb, mainly due to calcinosis lurking beneath the surface. The index finger ulcer is new, however, due to another calcium deposit. It is healing, slowly. The ring finger ulcer is more like a thin opening in the skin surface due to dryness. It is harder to heal, maybe because the skin is just very delicate.

So, I clean and bandage them twice a day and am very careful to keep them free of infections. It’s such an ingrained routine at this point that I don’t think much about it—except that I’m going through boxes of bandages at a faster rate than normal. For most of the summer and fall, I just had my thumbs to deal with.

There is some judgment involved, however. At what point do I leave off the bandage at night and allow my finger to heal on its own? It’s a real balancing act. If I forgo the night bandage too soon, the ulcer can get too dry and uncomfortable and wake me up. But if I rely on bandaging too long, then the ulcer may take even longer to heal and possibly get larger. I recently weaned an ulcer on my left index finger successfully. I’m working on the right ring finger this week.

I also need to be careful not to overuse my hands. I was reminded of this over the holiday weekend, when I was immersed in a sewing project that required some hand sewing—a frustratingly major challenge, given my resorbed fingertips and all the bandages. The result was an enlarged ulcer on my right thumb. Aargh. At least the project came out well.

Always an adjustment, heading into winter, no matter how many years I’ve lived with scleroderma. So it goes.

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.

Interior Monologue

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In less than a month, 25 days, to be exact, the winter solstice arrives here in the Northern Hemisphere. Which means that in just about two months, even as the sun will be visible about the same lenth of time as it is today, it will seem a little brighter because we’ll be gaining, instead of losing, a few seconds of daylight every day.

I always feel better when we finally reach the first day of winter. Even when it’s cold in January (though that is a relative concept these days) and I have to layer up to keep warm, even as our heating bill balloons, I feel a bit more optimistic, knowing that each day the sun will be shining a bit longer.

But, of course, this is all in my head.

So much of how we experience the world depends on the stories we tell ourselves. They can be empowering. For decades I have told myself that my scleroderma may limit me in certain ways that I need to respect, but it does not define who I am. That story has become my reality, and it’s enabled me to keep going.

But those self narratives, which are often not obvious when deeply entrenched, can also be the source of much pain. When we filter our lived experience through old, worn-out stories that were birthed in childhood, we get mired in doubts and fears and anxiety.

There are a lot of real reasons for doubts and fears and anxieties right now, but I am trying my best not to allow myself to get stuck in old, worn-out narratives that cramp my ability to see clearly how best to respond. It’s hard. Then I remember the natural cycle of the sun, admire November’s sharp shadows, and ground myself, once again. And if the prospect of lengthening days gives me a boost, even if it’s just in my head, I’ll take it.

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.