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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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White Out

Evelyn Herwitz · February 24, 2026 · Leave a Comment

As I write on Monday afternoon, all is white outside, once again. We are in the midst of a blizzard that has slowed down our corner of the world. Maybe a foot-and-a-half of snow when this is over later today, maybe a little less, maybe a little more—on top of all the snow that hasn’t yet melted from last month’s storm. Al has shoveled half our drive, so far, and is taking a well-deserved break. Thankfully, we still have power and heat.

All appointments and my acting class cancelled, once again. But we’ll catch up, eventually.

Big storms are humbling. And disorienting. Is it Monday? Or still Sunday? Does it matter?

Outside, the birds and squirrels know how to cope without worrying about what day it is or what comes next. I’m trying to take my cue from them.

Stay safe out there, 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.

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Filed Under: Body, Mind, Sight Tagged With: anxiety, body-mind balance, resilience

Olympic Interlude

Evelyn Herwitz · February 17, 2026 · 2 Comments

Nearly every night for the past 11 days, I have been reveling in the Milan Cortina Winter Olympics. Watching these amazing athletes’ extraordinary feats has been the best antidote to horrible headlines and stress. It has also helped me get through my bout with the flu and the lagging fatigue and residual, annoying cough.

I am a sucker for the whole spectacle. I feel elated when “old” athletes, who are at least half my age, triumph, as did Italy’s Federica Brignone, whose courageous comeback in the women’s giant slalom earned her gold. Honestly, her win brought tears to my eyes (to the extent I can make tears).

And my heart goes out to those who fall, like champion skier Lindsey Vonn and ice skating wonder Ilia Malinin. Vonn’s skiing career may be over (I really hope she doesn’t risk breaking her leg or shredding her ACL again), but Malinin will be one to watch in 2030. I wish him well and hope he learns from his Olympic experience to keep growing and striving for his personal best.

I will never be able to soar through the air like freestyle skier Eileen Gu, but I love watching her fly with such joy. I am inspired by the extraordinary grace and strength of ice dancers Madison Chock and Evan Bates. But what moves me the most is the sportsmanship of so many athletes from around the world, who compete so intensely and then congratulate each other so graciously.

Our world could use a lot more of that spirit. May it be so.

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: Passo Falzarego, Cortina d’Ampezzo, Italy, by Marco Czollmann

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Filed Under: Body, Hearing, Mind, Sight Tagged With: managing chronic disease, mindfulness, resilience, stress

Storm Watch

Evelyn Herwitz · January 27, 2026 · Leave a Comment

As of midday Monday, as I write, we are immersed in white. Al shoveled a foot-and-a-half of snow for two hours this morning, then fell asleep in his armchair for a while. At some point this afternoon he’ll go back outside and finish clearing our drive. We’re expecting up to another three inches by nightfall.

I’m glad he took a break. The snow is fluffy, but even so, it’s a lot of work. I wish I could help, but between the extreme cold and my hands, there is no way for me to do so. Indeed, it’s been decades since I could shovel snow. The last time I can recall, we still lived in our prior home on a major street, and as I was trying to clear the foot of the drive, a plow went by and blocked it up again. The guys in the plow laughed.

Today, Al told me, the plow that was doing another pass on our street actually stopped and helped to clear the end of our drive as well as our neighbor’s across the street.

Looking out for each other is essential in a storm, all the more so today when the storm is not just weather-driven. To the people of Minneapolis, my heart goes out to all of you, especially to the grieving families and friends of Renée Good and Alex Pretti, as well as my gratitude for showing the world what it really means to be in community—in the most bitter, cold, savage circumstances.

I contacted my senators today to express my outrage and ask them to use every tool available to stop this madness when they vote on appropriations this week. It took all of five minutes. It’s the very least I could do. You can find contact information for your congresspeople 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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: managing chronic disease, mindfulness, resilience

What If?

Evelyn Herwitz · December 30, 2025 · 2 Comments

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, managing chronic disease, resilience

What We Take for Granted

Evelyn Herwitz · December 16, 2025 · Leave a Comment

Early Monday morning I was awakened by what I thought, in my half-dream state, were raccoons or some other large critters running around on our roof and climbing in the gutters. Then I heard voices outside. I roused myself to look out the front window and discovered a row of city public works trucks outside, yellow lights blinking, and a backhoe with some kind of drill punching holes in the pavement in front of our neighbor’s driveway. Each punch made our house tremble.

Some mighty big raccoons!

The trucks were still there when the sun rose. Turns out a water main on our street had cracked open in this very frigid weather we’re enduring. So, no water for morning ablutions or anything else. Fortunately, Al had left a large plastic pitcher of water on the kitchen counter the night before, so I could use some to remove my bandages and wash my hands before re-dressing them, as well as water to rinse my eyelids, essential for my cleansing ritual for very dry eyes.

Within a few hours, a new pipe was installed and the crew began refilling the large open pit on the street. I went outside to thank them, because I’d learned from one of our neighbors that they’d been there all night. Not enough workers available to cover in shifts (another main had broken on a nearby thoroughfare the same night). The man I spoke with was very polite and informative, and he said our water would be back on soon.

Sure enough, within the hour, it flowed—gritty, at first, with a burst of trapped air, but running clear soon after.

The whole experience really struck me. It’s bad enough when power goes out in a storm. But losing water is truly disruptive. We’re so used to easy access. Just turn on the tap and fill your cup, wash the dishes, brush your teeth. Flush the toilet and, poof, your poop is gone.

It’s easy to criticize the city for a broken water main, for old infrastructure that hasn’t been updated, for all the inconvenience and disruption. But I am truly grateful to these guys for coming to our rescue in the middle of the night and staying the course in bitter cold to restore this most basic of needs. When I thanked the crew leader, he said, “It means a lot to hear that.” Another neighbor ran out and brought the crew a dozen doughnuts.

For all the disparaging remarks in casual chatter, on social media and elsewhere about government workers being lazy, corrupt, or otherwise deplorable, most are honest, hard working, and devoted to their jobs of making our lives easier. They truly deserve our respect and thanks.

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: Joshua Junior

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Filed Under: Body, Mind, Sight, Touch Tagged With: gratitude, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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