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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

Self Pep Talk

Evelyn Herwitz · December 9, 2025 · 2 Comments

It’s only December and it feels like January here in Massachusetts. Rolling up in a ball and hibernating sounds enticing. It’s hard to get myself out of the house, let alone out of bed in the morning. When I sit too long at my computer, I stiffen and need to rouse myself.

But I know that if I don’t get up and out, I’ll feel even worse. Moving is what keeps me moving, getting blood circulating in my brain and into my fingers and toes.

So, I kept a commitment on Friday morning, even as it was only single digits outside, to go with a friend to a special awards luncheon an hour’s drive from here for a project we’d worked on for our fair city. It was uplifting and fun and just an all-around good experience. On Saturday, I made myself walk, bundled up, to synagogue, and then later spent a pleasant afternoon studying texts with two good friends.

Then on Sunday, Al and I went to Hartford, Conn., to celebrate our 41st anniversary (which is actually today). Why Hartford, you ask, when Boston, with all of its cultural attractions, is just an hour away? Because there is a wonderful art museum there, the Wadsworth Atheneum. We also took in a ballet performance of The Enchanted Toy Shop by a local conservatory and had a really nice Italian dinner after. None of which cost anywhere near what Boston costs, and the street parking on weekends is free.

And, despite 21 degrees outside as I write on Monday afternoon, I’m about to head out to Pilates and to do some errands. And I have my acting class tonight at our local conservatory.

All of this reminds me, even as my instinct is just to burrow under the covers, that I really do better when I stay active—mentally, emotionally, spiritually. Being physical is a real challenge this time of year, but the more I move and keep stimulating my brain, the more those physical challenges seem manageable. As I keep telling myself.

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: Lydia Reclining on a Divan, c. 1882, possibly by Mary Cassatt, Wadsworth Atheneum

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Touch Type

Evelyn Herwitz · December 2, 2025 · 4 Comments

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

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

Long Drive for a Short Appointment

Evelyn Herwitz · November 18, 2025 · 2 Comments

This is one of those periods when all of my many and various specialist appointments clump together. I can go for weeks without seeing any of my docs, and then, boom, lots of visits—most likely because they are on similar follow-up schedules, usually four months apart.

I definitely consider myself fortunate to have such an excellent team of specialists, both close to home and closer to or in Boston. But most of my team are at least a 45-minute to an hour-and-a-half drive from home, assuming traffic is light. Which basically kills half a day, between driving, parking, and waiting, plus the appointment itself.

Again, glad to have a great team in place. But what drives me crazy are the 15 minute appointments that require all that driving. As happened Monday, when I had my final follow-up with my excellent periodontist for my latest implant. Or this Thursday, when I need to drive into Boston for a 15-minute lung CT scan, a regular part of my protocol with my BMC pulmonologist who monitors my interstitial lung disease. Could I have this test done at a hospital near home? Yes, probably, but the communication of test results is not always great between providers. So this, in the long run, is more efficient.

Sometimes I’m able to schedule appointments in Boston all on the same day. I have such a plan in place for December when I was able to schedule check-ups with both of my pulmonologists (the other one tracks my Type Two pulmonary hypertension) plus a pulmonary function test. So, this will work so long as one of them doesn’t cancel out at the last minute. Not holding my breath.

Managing a complex disease like scleroderma takes a lot of time and scheduling. After 45 years of dealing with all of this, it’s just part of my routine. But I wish, sometimes, it wasn’t so time-consuming.

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: A n v e s h

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Filed Under: Body, Mind Tagged With: body-mind balance, managing chronic disease, resilience

Why Me?

Evelyn Herwitz · November 11, 2025 · 1 Comment

For all of the bad things that happened during the COVID pandemic, the one good thing that happened for me was reconnecting with old friends over Zoom. Five years ago, when we were hunkered down, I looked up friends from my teens and twenties and caught up online.

Some of us have continued those conversations, maybe once or twice a year. And this past Sunday, a bunch of old friends from my high school days shared our lives for a couple of hours. It was funny and poignant and an important touchstone for all of us, to recall where we came from and where we’ve ended up.

One of my friends, whom I haven’t seen in fifty years, shared that her sister had also had scleroderma. She died several years ago from a brain tumor, but lived with significant skin tightening for about 15 years. A number of years ago, I had also learned that the older sister of another classmate had died from very aggressive scleroderma. What are the odds that three women from the same small high school all got this rarest of diseases?

My friend on the call Sunday has wondered if the fact that our school was not far from a nuclear power plant might account for her sister’s illness and other rare autoimmune diseases that run in her family. I have wondered if the two years I spent in graduate school in Pittsburgh, living in a neighborhood on a hillside above the Jones & Laughlin Steel mill, which flushed its stacks every weekend, filling the air with the thick odor of rotten eggs, may have played a role in my disease trajectory.

Researchers still don’t know exactly what causes scleroderma, this formidable autoimmune disease that tricks the body into producing too much collagen that tightens and hardens skin and connective tissue. My rheumatologist at Boston Medical has told me the latest theories point to some kind of virus that triggers the disease process in people with certain genetic predispositions. It is not contagious, and very rare for direct family members to share the disease.

Stress also plays a role in disease onset. Research supports this, although other factors—genetic, hormonal, environmental, and immune system health—are all part of the mix. In my own case, I developed symptoms (puffy fingers, migrating arthralgia, gut issues, fatigue) in my late twenties after my first marriage ended in divorce. I was anxious and running on adrenaline while coming to terms with it all (not to mention the stress of the marriage itself, which was considerable). All that adrenaline flooded my body with cortisol—which at too high levels can damage the body’s immune system.

So, whatever else I was exposed to and whatever my particular genetic mix, that probably set the stage for my getting scleroderma.

If there’s one thing I’ve learned from all of this, it’s to take stress seriously and to do my best not to let it overwhelm me (not always successfully in our tumultuous times). Meditation helps. So does exercise (Pilates, walks, stretching). So does surrounding myself with nature and art and music. Loving family and friends are essential supports.

Recently I was listening to a meditation app that mentioned a Korean custom to eat only until you’re 80 percent full. The idea is to not overdo, to leave room to appreciate what you’ve enjoyed. It provides a good metaphor for living, as well—to engage fully, but not to the point that you deplete your energy (or run your health into the ground). Keep that 20 percent reserve for resting, recuperating, and recharging.

I’ve been thinking about this a lot, lately. I hope it’s a useful concept for you, as well, Dear Reader, especially right now. Take care.

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: engin akyurt

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, COVID-19, managing chronic disease, 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…

Blog Archive

Recent Posts

  • What We Take for Granted
  • Self Pep Talk
  • Touch Type
  • Open Wider, Please
  • Long Drive for a Short Appointment

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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