Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

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

Bandage Break

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It’s taken nine months, but the ulcer on my left ring finger has finally healed—for now. I must add the caveat, because I never know when the skin will deteriorate again.

But for now, it feels great to be out of bandages on that finger. Last January, it became infected, I lost the nail and was in considerable pain. My go-to antibiotic failed to clear it, so I saw an ID specialist who put me on Levaquin, which is powerful but cannot be combined with Ibuprofin, which I rely on for my joint pain. It also comes with risks of tendon tears. Fortunately, that didn’t happen, but I ended up needing Gabapentin to manage nerve pain. Visits to our hospital’s Wound Clinic finally helped me turn the corner with some new dressings, but it has been one very long haul.

I saw my NP at the Wound Clinic about ten days ago and asked her advice for weaning my finger from its bandages. This is always a tricky step. If I go without too soon, my ulcers inevitably get worse. She encouraged me to try using a moisturizing cream (Eucerin is my initial go-to) without a bandage at night, and I finally worked up the courage to do that a few days ago. At night the risk is always for the uncovered ulcer to dry out and start smarting, costing precious sleep.

Fortunately, that didn’t happen, either. I’ve been able to keep off the bandage since the weekend, even did some housework and had no issues. And so, I’m grateful to be at this point, at least for the time being. Even with scleroderma, my skin can still heal, which is a miracle in itself. And any break from bandaged fingers is a much appreciated vacation.

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.

Threading the Needle

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I finished sewing another dress this weekend, just in time for Rosh Hashanah, the Jewish New Year, which begins today. It’s customary to wear something new for the holiday. As per usual, however, I started making this dress, which I’ve been thinking about all summer, just as the weather was turning cooler. It’s a lightweight, very silky rayon knit, beautiful but tricky fabric (also per usual—I always seem to pick what’s hardest to handle). Not autumnal material.

By a stroke of good fortune, however, Tuesday here is supposed to be warm again, for one day. I’m writing on Monday afternoon, fingers crossed. And if it is actually cooler than expected, I bought a long-sleeved silk shirt and leggings to wear underneath. So, hopefully, this will all work out as planned.

In any case, I picked the fabric both for its floral print and drape. It’s very soft and wonderfully fluid. Which made it challenging to sew. And so, I had to hand baste some critical seams in place before stitching them with my sewing machine. This included tacking down the inner waistband facing and the very, very, very long hem (it’s a wrap dress).

Hand sewing is the best way to achieve accuracy in a garment, but it is extremely challenging for me at this point. Not only because my fingertips have resorbed significantly, but also because I have so many bandages on my fingers. Which makes it hard to feel what I’m doing.

Not only that, threading the needle is tricky because of my very dry eyes, due to Sjogrens. No matter what I do of late with various eye drops, I cannot clearly see something as small as the eye of a needle, especially of a fine needle for sewing rayon. It takes numerous tries, using a pair of tweezers to hold the tip of the thread and turning the needle this way and that to see the eye. Eventually I get it threaded, but not without uttering a string of choice words.

And inevitably, when I get to the end of a particular piece of thread, but not quite, I manage to pull the needle too far and lose the thread. Which means threading it again. Especially on a very, very, very long hem. Which lets loose another long string of choice words.

So why do I do this to myself? Sewing is supposed to be a fun, relaxing hobby, right? I guess I’m just stubborn. I refuse to give up this skill that I’ve honed since I was a teenager. The results are never perfect, but it always gives me a boost to wear something I’ve made well.

I’m really pleased with the dress, and even if I only get to wear it once until the weather warms up again next summer, it’s a good way to start the New Year—stubbornly refusing to relinquish my ability to make something beautiful, especially now.

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.