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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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A Day in the Life

Evelyn Herwitz · April 28, 2026 · Leave a Comment

I’m heading into one of those periods when I have at least one and often two or more medical appointments each week for several weeks. Last week I met with our PCP to evaluate my sore back. Turns out it’s not a pulled muscle; it’s sciatica. Ugh. Treatment remains the same—lidocaine patches, OTC pain meds, heat or cold as needed, gentle stretching, no heavy lifting, rest, rest, rest. I’m slowly improving, able to sit and write at my computer again and drive longer distances, take walks. Sleeping soundly. All that is good, but I wish it would just go away.

My resilience was put to the test the next day, when I had to get up very early to drive in rush hour traffic to Boston for a 9:00 a.m. echocardiogram to assess my pulmonary hypertension, followed by a later morning appointment with my cardiologist. I did okay on the long drive, knowing from experience that I could lie down and doze during the echo, depending on how the tech handled the ultrasonic probe. Fortunately, he had an excellent, light touch, and I was able to rest for most of the half-hour procedure.

I found a cafe not far from the clinic and roused myself some more with an excellent breakfast. Then, after getting my sense of direction mixed up and walking a few blocks the wrong way (more tired than I thought), I realized my mistake and walked back to the clinic with 10 minutes to spare for my next appointment.

I was led to an exam room right on time for an ECG. But my cardiologist was backed up, so I was sent back to the waiting room for a while. Maybe a half-hour later, I was ushered into an exam room again, only to sit and wait for another half hour or so. This is when my iPhone is a necessary companion. I kill a lot of time in waiting rooms doing The New York Times crossword and other puzzles.

At last my wonderful cardiologist arrived, apologizing for the delay. Turns out there was a crunch of patients who showed up all at the same time. In any case, we reviewed my echo preliminary results, which were stable. Always reassuring. Pulmonary pressures were good. He noted, as he has previously, that I have some fluid around my heart, a bit more than is normal, which he attributed to some stiffening of the heart muscle due to scleroderma, which apparently impedes normal fluid absorption. Nothing to worry about, but important to track. He ordered some blood work to rule out any inflamation. We compared notes on sciatica. He’s lived with numbness in his left leg for years.

Then it was down to the lab for a blood draw. I had some other tests for my new GI specialist from a previous appointment that I could not complete at the time, so I took care of all that. The phlebotomist’s name was also Evelyn, so we bonded and chatted about our different nicknames (she goes by Eva and I, by Evie). I informed her that I have small, rolling veins, which can be an issue for getting stuck easily, and she used a butterfly needle, a good thing, because there were six vials to draw.

That accomplished, I drove home, which only took an hour, given no traffic midday, then stopped at the pharmacy to pick up a refill. By the time I got home, seven hours had elapsed since I’d left. I plugged in my heating pad and took a much needed nap, which enabled me to get some work done at my computer later that afternoon.

I’m always grateful for all of the excellent medical care. I’m also grateful when I can have some days off from all those appointments. Sleep is essential. Pacing is everything.

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: Jackman Chiu

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

Aging Grace

Evelyn Herwitz · April 21, 2026 · Leave a Comment

I turned 72 on Saturday. It was a birthday when I felt my age more than I would have liked. A couple of weeks ago, I aggravated an old lower back injury, trying to do more than I should have. Thought it was resolving, just a bit sore. Then on Wednesday afternoon, after I got back from driving once again into Boston environs to take care of my loose crown (yes, it’s finally tight and stable!), after I sat at my computer for several hours, when I tried to get up, I could hardly stand.

What the . . .  ?

It was really quite astonishing. I couldn’t get up easily or sit without pain, couldn’t walk without pain, couldn’t bend over. Called our PCP’s office and spoke with one of the nurses, asked what to do and if I needed a PT referral. She promised to get back to me, but for whatever reason, I did not hear anything, so I called the coverage after hours. That nurse, who, from background noise, appeared to be working from home and a bit distracted, nonetheless read me the notes I hadn’t received: warm compress, lidocaine patches, heating pad, rest, gentle stretching, OTC pain relief. I knew all that already, for the most part, having been through this a few years ago. But followed her suggestions.

Spent the next few days mostly on my back with a heating pad. I was able to visit with friends on the afternoon of my birthday, a very welcome break, and then go out to dinner with Al that evening, but scrapped our plan to see a play matinee on Sunday because my back felt worse again. We’ll make up for it another time.

By Sunday evening, I realized that part of the problem could be the memory foam topper on the bed, which I hadn’t flipped in months—necessary to keep it from getting too squishy, because soft bedding is not good for my back. So Al helped me remake the bed, and Monday morning I was feeling a bit better again. As I write this at my desk, I have the heating pad on my back.

Our geriatrics team called me late last week to follow up and set an appointment with our NP to make a home visit on Wednesday. So that will be my opportunity to review progress and figure out the PT question. I’m glad she can come here, one less drive and office waiting room to sit through. I’m feeling more confident that this, too, shall pass, as my mom used to say (an aphorism that used to drive me crazy, but bears remembering).

Above all, I realized that this birthday’s lesson was all about patience and being realistic about my limits. The older I get, the more relevant it becomes to remember that I need to set some boundaries for myself, even as I do my best to stay healthy and strong. My body is aging, all the more so with scleroderma, and that is just how it is.

At moments like these, I hear T.S. Eliot in my head, from The Love Song of J. Alfred Prufrock:

I grow old . . . I grow old . . .
I shall wear the bottoms of my trousers rolled. 

Here’s to another year. May we all age as gracefully as we can.

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: Julien Tromeur

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

Here We Go Again

Evelyn Herwitz · April 14, 2026 · 1 Comment

So, it’s back to my dentist again tomorrow to get my new implant crown readjusted one more time. Sigh. Twenty-four hours after Dr. K cemented the new, improved version into my mouth, I felt it wiggling. I called the office and asked to have his partner, Dr. F., take a look.

This is complicated. Dr. K has been my dentist for more than 20 years, and he’s been a great resource, fully understanding my issues with scleroderma. My mouth is tight and hard to work with. Then there are all the resorbed teeth requiring implants. However, the reality is that his fingers are too big to easily maneuver when dealing with a crown for a molar. Dr. F has small, deft hands, and she also doesn’t get stressed like he does (he worries he’s hurting me—which is sometimes the case, if he stretches my lips too much).

The silver lining is that Dr. K has been cutting back his hours as he shifts into retirement. Last Monday when he installed the crown, he told me it was probably the last time I’d see him because he was cutting back even more. I thanked him for all his good help over the years.

And, with a clear conscience, the next day I asked for an appointment with Dr. F to tighten up the crown and finish the job. She’s been his closer when my mouth presented problems before, and I have total faith in her.

Self-advocacy with medical professionals can get a bit dicey when you have long-standing relationships with your providers. But, ultimately, you have to stand up for what is best for you. And be sure to say thanks along the way.

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: Kevin West

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Filed Under: Body, Mind, Taste, Touch Tagged With: dental implants, self-advocacy

Until Next Year

Evelyn Herwitz · April 7, 2026 · 3 Comments

Last Wednesday night marked the beginning of Passover, when we always host the first seder for our extended family. Al’s first cousins always host the second seder. This is a family tradition that dates back to Al’s mother and her youngest sister, who alternated hosting the two festive meals every year, when we join Jews around the world in retelling the Exodus story.

Even though we share the meals between the two families, it’s still a lot of work. My hands were in rough shape as the holiday approached, with six fingers in bandages, due to persistent ulcers and calcium bits that had chosen just this time of year to travel up to the surface and hang around without popping out. This feels like having grains of sand stuck under your skin. No fun.

Fortunately, our younger daughter had already planned to come up from Philadelphia to help out with the cooking for three days. Yes, it takes that long, because I can’t help myself. I always plan a very special meal with lots of courses. Even when I’ve mastered all the recipes and know how to pace myself with the meal prep, it’s just a lot of work.

So, we cooked and shopped and cooked together for several days. She did the lion’s share of the chopping and mixing and frying and baking, while I directed and handled a variety of smaller details that were essential for the final meal. Here’s what we made: Egyptian charoset, which is a mixture of dates, raisins, ground nuts and sugar; hard boiled eggs; pickled salmon (a family favorite, as an appetizer); Egyptian potato soup; spinach patties; roasted carrots, beets, and turnips; a salad of oranges, avocados, red onions, arugula, and a cinnamon vinaigrette dressing; apricot sponge cake, chocolate chip meringue cookies, strawberries, grapes, and chocolate for dessert. And, of course, there was plenty of matzah, including gluten free.

It was a hit. Worth all the effort. We had fun cooking together, though I was quite tired afterwards.

Learning how to ask for and accept help is a crucial part of living with scleroderma. I’m very grateful to our daughter for being so willing to step up and keep the family tradition going. Until next year . . .

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, Hearing, Mind, Sight, Smell, Taste, Touch

And Now for Something Completely Different

Evelyn Herwitz · March 31, 2026 · 1 Comment

When I am not writing about living with scleroderma or helping my clients with marketing and communications strategy, I pursue my own writing. Fiction, that is—historical fiction, in particular.

Back in 2014, I began working on a novel set in World War I about a mother whose estranged daughter runs off with her beau to drive ambulances for the French war effort, and the mother’s journey to bring her back home. It took seven years to research and write, and it’s taken another four-and-a-half years of searching for a literary agent and/or publisher. But persistence finally paid off, and I’m thrilled to share that my debut novel, Line of Flight, will be published by Köehler Books this December.

I write about the process of creating historical fiction on my Substack, History Making, and you can read a bit more about how this all came about here.

You’ll also find a bunch of essays there about how I researched the novel, as well as the novel I’m working on now regarding art and censorship in Weimar Germany.

As I’ve written here before, we are all much, much more than our diagnoses. In my heart of hearts, I’m an artist. Words are my medium. I’ll be sure to post here when the book is ready for pre-order, for anyone who’d like to read about something other than living with scleroderma. 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: Getty Images for Unsplash

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Filed Under: Body, Mind Tagged With: body-mind balance, historical fiction, Line of Flight, 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

  • A Day in the Life
  • Aging Grace
  • Here We Go Again
  • Until Next Year
  • And Now for Something Completely Different

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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