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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Blue Mind

Evelyn Herwitz · March 25, 2025 · Leave a Comment

Last week, after all the mishegas with my roller-coaster blood pressure was mostly resolved (no, thank goodness, I was not experiencing scleroderma renal crisis, which would be a rare but very serious development at this stage of my disease), Al and I went to Cape Cod for a few days.

I had planned this trip for several months as a writing retreat on my own, to dig into Novel 2. Given that I was/am still adjusting to my new BP med, however, I did not feel comfortable making the long drive and staying alone. The cottage I had rented was a small. renovated barn next to the home of two artists in Truro, which is way up on the Outer Cape, a short drive west to the Bay and east to the Cape Cod National Seashore.

And so, once settled in, we visited a beach each morning, where Al then stayed to walk the shore all afternoon, while I went back to the cottage to write. It was the perfect getaway. He reveled in nature, and I cleared my head, felt the healing moisture of sea air on my too dry eyes, and made some real progress on my novel.

I also discovered that Apple’s Pages software, which I’m using for this draft, includes a dictation feature that comes in very handy for transcribing my handwritten scenes into my document, as well as mining material from my first draft. My left ring finger remains a problem (requiring yet another doc visit, this time to an ID specialist), so this feature was really a hand-saver.

There is nothing like the ocean to calm my nerves, lower my blood pressure, heal my eyes, clear my lungs, and just enable me to recenter myself. And there is nothing like the Cape off-season, with hardly any people or cars around, just the waves pounding and receding, to give me the clarity I need to write fiction.

Here are a few pictures from the beach and environs. Be well, Dear Reader.

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: Uncategorized

Cooped Up

Evelyn Herwitz · February 11, 2025 · 4 Comments

It’s 30 degrees F here today, but the real feel is about 19. It snowed over the weekend, just over four inches of fluffy white stuff, very pretty for a day and now shrinking into icy clumps. It’s too cold for me to take a walk, and the streets are patched with ice.

Ugh. I know it’s a lot colder elsewhere in the world, and there are far too many other urgent issues that demand concern. But right now I’m just feeling stuck inside, when I do my best thinking outside.

My ulcers are healing slowly, a bit better than last week, thanks to starting antibiotics when I realized I had at least one and possibly two infected fingers. But I still can’t do a lot of typing. Which also helps me think.

So I am just muddling along, trying to make the most of this cold day without getting too stuck in the muck I can’t control. I think we could all use a shovel to dig ourselves out, right about 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.

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Filed Under: Body, Mind, Touch, Uncategorized Tagged With: finger ulcers, how to stay warm, infections, managing chronic disease, stress

Untressing

Evelyn Herwitz · July 21, 2020 · 2 Comments

So, I finally took the plunge and got my hair cut. I had been putting this off for months, even after hair salons reopened under Phase I here in Massachusetts. Indeed, I rescheduled at least twice, because I was just too nervous about the pandemic risks.

Then the heat wave hit. It’s July, it’s really hot, even for me, and my hair not only resembled Albert Einstein’s, but also was just compounding my sense of overheating. I rarely perspire, but sweat was streaming down my forehead and into my eyes.

I tried a stopgap with hair combs and clips, which worked up to a point. It was kind of fun to be able to play around with my hair again after wearing it short for decades. But not fun enough to make it worthwhile for the long haul that this pandemic surely is.

My salon is in Boston, worth the trip for the talent—my March haircut lasted at least two months before it went haywire. I called ahead to double-check what precautions they were taking and was very pleased that they not only were following the strictest protocols, but also that my stylist wears a face shield over her safety glasses and mask. If she’s being that careful (which she needs to, because she’s at greater risk than I am from so many contacts during the day), then I figured I’d be in good hands. And I knew I could wait another two months before returning.

Even still, I was nervous before leaving the house last Tuesday. What if I was making a huge mistake? What if I got Covid and had a really serious case, given my high-risk status with scleroderma, all for the sake of vanity? I shared this fear with Al that morning, and he was clear that I was neither (a) doing something stupid nor (b) vain. This helped.

I made it into Boston in under an hour (pandemic = no traffic) and found street parking. So far, so good, no need to touch the meter because of my parking app. Most people were wearing masks, as I was, and the sidewalks were not overly crowded, so I could stay six feet or more away from others. I had hoped the salon door would be open, but it wasn’t; I was prepared, and put on a rubber glove to pull it open, so no contact there.

The receptionists were courteous, took my temperature with a forehead scan, then handed me a salon robe. My stylist greeted me soon after and asked if I wanted my hair washed or just spritzed with water for the cut. I was glad to have the option and chose the latter. She sanitized her hands and set to work.

Forty-five minutes later, there was a lot of hair on the floor, and I looked like myself again. She did a wonderful job. I had prepaid online, so there was no need to handle my credit card for the cut or a tip. I sanitized my hands and left feeling great.

Still doubts lingered. For the next few days, I found myself second-guessing any tiny change in my health—a sneeze, a cough, an odd tingling in my tongue (this, I realized, was due to something in a takeout pizza we consumed for dinner that must have been an irritant). But I also was certain that I’d know if I were sick. I am very attuned to my body, and whenever I’m coming down with something, I immediately feel off-kilter. As I write a week after my haircut, I still feel fine, thank goodness.

Getting my hair cut was about more than just wanting to feel cooler in the heat and wanting to look my best, although those were certainly motivating factors. It was also about reclaiming a piece of normal. It was about overcoming my fears of what this pandemic has wrought and taking a carefully calculated risk. It was about supporting my stylist so that she could continue to make ends meet.

My hair is one of the very few things I can control about my appearance, ever since I contracted scleroderma. When it looks good, I feel good, and when I feel good, I have more energy and confidence. And I can be more present and supportive of others. Well worth it.

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: Ugur Peker

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Filed Under: Body, Mind, Sight, Touch, Uncategorized Tagged With: body image, body-mind balance, COVID-19, hands, managing chronic disease, mindfulness, resilience

Luminous

Evelyn Herwitz · December 25, 2018 · Leave a Comment

So much tumult this past week, leading up to the holidays. And so, Dear Reader, I offer you this peaceful respite⎯a beautiful stained glass exhibit at the Worcester Art Museum. In the 1890s, when these artworks were created, stained glass windows were designed to uplift the spirit and provide an opportunity for contemplation. We all need that now, more than ever. Enjoy, and for all who celebrate, have a lovely Christmas.

“The Pool at Bethesda” by John La Farge, 1898
“Angel of the Resurrection” by Louis Comfort Tiffany; design probably by Frederick Wilson; 1898
“Peacock Window” by John La Farge, 1892-1908

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: Uncategorized Tagged With: Worcester Art Museum

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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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