Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

A-Peeling

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Prepping vegetables for meals is one of those tasks that I often find challenging. I need to wear latex gloves when I cook so I don’t infect my finger ulcers, and this makes handling food difficult, because my fingers have been shortened by both resorption and surgery, so the tips of the gloves always flop around and get in the way. Onions, in particular, are tricky, and my lack of tears from Sjogren’s can make slicing them extremely uncomfortable.

Then there is garlic. I use a lot of garlic in recipes, but it is a beast to peel. I can’t do the trick with slamming the flat side of a chef’s knife on a clove, because I need to protect my hands. So I end up trimming the top and bottom with a paring knife and then slowly picking away the papery skin. Very, very tedious.

That is, until today, when I tried out my new silicon garlic peeler. At least a year ago, a good friend who is an excellent cook introduced me to this little gadget, which I thought was ingenious but never got around to buying—that is, until I had to order some new potholders last week to replace old stained ones that had attracted a mouse. As long as I was finally replacing those gross potholders, why not get the garlic peeler, too?

Here’s how it works: The inside of the tube is covered with bumps to create friction. You place the clove inside, then press down on the tube with the heel of your hand and roll it back and forth a few times. Presto! It neatly removes the skin and leaves you with a perfectly clean garlic clove! Rinse out the tube, and you’re good to go.

Whoever the genius is who invented this handy (literally), inexpensive tool, my heartfelt thanks. Now, if anyone knows of a good tool for easily peeling and slicing onions that won’t make me cry dry tears, I’m all ears.

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.

Second Skin

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Over the past year, I have been seeing a nurse practitioner at the Wound Center at our local hospital. She is absolutely brilliant, creative, and a great, empathetic listener—as are other members of her team. And she has introduced me to a number of wound care products that have made a significant difference in how I manage my digital ulcers.

Her latest suggestion was to try Cavilon™, a 3M product that creates a breathable barrier film on a wound. It comes in small, individual packets, about the size of a sticky note. It also, I just discovered, comes in a small pump-spray bottle, which is probably more efficient.

In any case, the stuff works. You wipe or spray it on the wound and it quickly dries to a clear, waterproof film, protecting the skin without need for a bandage. And, unlike other liquid skin products that I’ve tried, it does not burn.

For years, I’ve wished for a dressing that I could use at the first sign of an ulcer, to prevent it from getting deeper and more problematic, requiring months of bandaging twice a day. I’ve been experimenting with Cavilon for a few days now, and it seems to fit the bill.

In particular, my skin grafts from hand surgery in 2017 get very delicate in the winter, exacerbated by dry heat. Two of the grafts have cracked over the past month, requiring bandages. But right now, as I type, I just have the Cavilon barrier on them. They don’t hurt, they are not cracking or peeling, and best of all, no bandages!

Cavilon is available online. You can learn more about it here. Please note that it is not recommended for infected wounds. And, no, I am not getting paid for my views. Just want to pass along my experience with a game-changing wound dressing. Be well.

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.

What If?

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For years, our younger daughter has been asking me to document how I bandage my fingers. What if you can’t do it and need help? she asks. What do I need to know?

So, last week, while she was visiting for the holidays, we finally got down to the nitty gritty. I reviewed all my dressings, what I use for which kind of ulcer, and she took videos of me bandaging my fingers. Right now, I have five ulcers, with various issues, so it was a teachable moment, as they say. I also guided her as she bandaged one of my thumbs, so she could get the feel of the process. Which she got, immediately.

But we didn’t stop with my bandages. She created a computer file, and we went over all my medical issues, medications, doctors, and more. It was a lot to discuss, and it was exhausting to pull all that information out of my head, but very important and well worth the time and effort.

You never realize how much you do automatically for self care until you have to stop and explain every step, especially for a disease as complicated as scleroderma. And if, God forbid, I became incapacitated, it’s very reassuring to know that she’d have a complete written and recorded explanation of what help I would need. I certainly hope she doesn’t have to access any of that information anytime soon. But at 71, I know I have to be realistic and prepared for more help than I am accustomed to. And I am extremely grateful that she has insisted that we create this manual—and finally did.

Wishing you, Dear Reader, and your loved ones a healthy and fulfilling New Year. This one’s been a doozy. Here’s hoping 2026 is a better year for all.

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: Jesse Cason

Touch Type

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As I was writing just now, I realized that I am typing with only my pinkies these days, with my thumbs handling the space bar. (Using an Apple keyboard makes this possible, because it requires only a very light touch.) Usually I also use my right ring finger, but it’s been out of commission for a few weeks due to another ulcer, which, of course, formed on a pressure point, as in where I touch the keys.

What’s so interesting about this is that I don’t actually notice, most of the time, how I’m typing. My hands have learned to adjust to various fingers being unavailable for so long that they “know” the distance between keys without my having to look (for the most part). Kinesthetic memory is a powerful sensory skill.

Many decades ago, when I could still play the violin, I could hear a piece of music and sense in my fingers how to play it—where each fingertip would land on the strings, which direction to ply the bow. I certainly can’t play Mendelssohn anymore, but sometimes I can still almost know, intuitively, how.

So, I guess I haven’t lost that skill. It’s just emerged in a different way. Pretty neat.

Our brains and bodies are quite amazing, even when they don’t work perfectly anymore.

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: Wayne Hollman

What Happened to Your Hands?

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Recently, a young boy was studying my fingers. “Why do you have so many bandages?” he asked.

“I have problems with my hands,” I answered. For a pre-schooler, that seemed the appropriate explanation.

He looked concerned, or perhaps afraid. “You don’t have fingernails,” he said.

“No, I don’t,” I said. Not exactly true. I have a few left, but they certainly don’t look normal, more like moon crescents. He seemed perplexed, but then he got distracted and that was the end of our conversation.

A friend who overheard our chat checked to see how I took it. “Kids say what everyone else is thinking,” I said. “He’s just curious.”

It really doesn’t bother me anymore when people ask, after all these decades of living with odd-looking hands and way too many digital ulcers, especially since my hand surgery eight years ago that necessitated some partial finger amputations. Most people who know me don’t pay any attention to my hands. When a stranger (often a cashier or someone else I’m handing something to) asks, Oh, what happened to you? or clucks about my bandages, I just take it as a mix of natural inquisitiveness and compassion.

My standard answer is something like, “I have chronic ulcers.” I don’t bother to go into an explanation of scleroderma, because the occasion doesn’t call for a lengthy discussion, and I’d rather keep it simple. Sometimes the person will ask a follow-up, Does it hurt? To which I say, “Sometimes.”

I realize that such inquiries can be much more challenging for those with severely tightened skin. Before my skin relaxed somewhat on my face, hands, and forearms (a miracle, truly, as it was beginning to get uncomfortable to blink in the early years, and the skin on my hands was like leather), people who knew me casually would ask with concern whether I’d lost weight. They sensed something was different, but couldn’t figure out what.

I was very self-conscious during that first decade. When I began to see wrinkles in my forehead again after several years on penicillamine (a since-discredited treatment because research samples involved too few patients to prove a positive response, but I believe it saved my life), I was thrilled. But my hands were already deformed by then.

It wasn’t until I began writing this blog in January 2012 that I started to overcome all the embarrassment that I felt about my appearance. There really is so much more to living with a chronic, deforming disease like scleroderma than your looks or your diagnosis and treatments, although I don’t in any way mean to minimize the very real physical and emotional pain and stress of literally being trapped in your own skin, when scleroderma takes its most virulent form.

What I have learned in my nearly 45 years of managing this disease is that people take their cues from you. The more accepting you are of yourself, the more accepting they are of you. It’s a journey. I’m grateful to be sharing it with you.

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: Alex Skobe