Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Inner Artist

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When I was growing up, my favorite thing to do in the whole world was drawing. Give me a pencil and a pad of paper, and I was in heaven. One year for my birthday, my parents gave me a drawing kit by Jon Gnagy, whose popular 1960’s Learn to Draw show was must-see TV for me. Along with an instructional book that taught you to analyze objects in terms of spheres, cones, and pyramids, the box contained drawing pencils and paper, a soft eraser, a blending stick, and charcoal. I spent hours in my room, sitting on the floor, working through all the exercises.

As I got older, my favorite drawing medium became pen and ink. But sepia conté crayons, colored pencils, and pastels were also high on the list. Every summer, I would bring a drawing pad and implements on our family vacations to Cape Cod and sketch at the beach. I took summer art classes as a preteen and a drawing class in college, watercolor and drawing classes in my twenties, and since then, occasional classes at our wonderful art museum. For our young daughters, I would draw illustrations and, in a reprise of childhood, would bring my pencils and paper to the beach for our Block Island vacations.

In recent years, however, I have hardly drawn at all. Some of it has to do with damage to my hands from scleroderma. In fact, that’s probably the main reason. Not that I can’t still draw, but when I have a lot of ulcers, it’s just harder to hold a pencil for any length of time. Or so I tell myself. I use triangular rubber grips on my drawing pencils to ease the pressure, and that definitely helps. But something has been holding me back—most likely, just reluctance to push my hands too far.

Even so, I’ve had a New Year’s resolution for more than a year to get back to drawing, which I managed to do only twice in 2024. Each time, once sketching my African violet, and once on Block Island last June sketching Al at the beach, gave me great pleasure. But I still kept putting it off.

On Sunday, I decided to try again—this despite having five bandaged fingers right now. I needed to do something joyful and rejuvenating after a week of such dark news. I pulled out my colored pencils and my mostly empty drawing notebook, set up a vase of roses on a low stool, so I could look down into the blossoms, and drew. It was wonderful. I sank right back into that peaceful, meditative space of observation and interpretation. No matter the ulcers, I could still control the pencils as well as ever. When I finished, I felt relaxed and happy and in tune with my inner, non-verbal artist.

She’s been clamoring for attention. She deserves more.

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.

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.

Cutting Loose

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As I’ve written a few times over the years since I began this blog, packaging is the bane of my existence. On Monday morning, I was wrestling with a plastic package for a nasal spray that I use occasionally to clear my sinuses and reduce post-nasal drip and related cough. The thing was hermetically sealed. No way to open it without a pair of sharp scissors. And even that was a struggle. I ended up cutting off one edge, then slicing straight down the middle of the plastic, then adding a diagonal cut to release the treasure so ridiculously enclosed. Throughout this mission, I had to be careful not to hurt my fingers on the sharp edge of cut plastic.

Why is this necessary? Are the manufacturers that fearful of someone opening their precious package in the store and stealing the goods? As it is, you can’t even access this product in a CVS or Walgreens without summoning a sales clerk with a set of keys to open the plastic-covered shelving, which has become ubiquitous in recent months to prevent shoplifting (another dubious trend).

And must we really rely on so much plastic for packaging? All that discarded plastic eventually breaks down into microplastics, which have worked their way into the global ecosystem—and our bodies. Microplastics, defined as less than 5 millimeters across, have been documented in human lungs, maternal and fetal placenta tissues, human blood and breast milk. They have been detected on the top of Mount Everest and in the depths of the Mariana Trench. They are in the air, our food, our water. Here’s a really thoughtful overview of the extent of microplastics’ spread from Science News.

While research into the health impact of ingested microplastics is not yet definitive, there is ample reason for concern. At the very least, according to research immunologist Nienke Vrisekoop of the University Medical Center Utrecht, microplastics are a form of air pollution. We know that familiar forms of air pollution, such as smog and car exhaust, stress our lungs. Vrisekoop, who is quoted in the Science News article, expects the same will be true of microplastics.

What to do? We can’t avoid plastics altogether, not yet, anyway, but at least we can try to reduce their use in our daily lives. I’m looking at you, bottled water. I may not yet have an alternative to that nasal spray, but I’m considering writing to the manufacturer to let them know what I think of their packaging. And of course, recycling plastics is a no-brainer.

There’s a famous line in the 1967 film The Graduate, when a very young Dustin Hoffman, at a college graduation party hosted by his parents, is advised of the one word that should define his future: “Plastics.” Indeed, it has defined all of our futures. Just not in the way we expected.

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: Naja Bertolt Jensen

Sew It Goes

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I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

Hand-off

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I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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.