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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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hands

What Comes Next

Evelyn Herwitz · July 31, 2018 · 3 Comments

This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.

At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.

Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)

Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.

August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.

There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take 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 Credit: David Monje

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hand surgery, hands, managing chronic disease, mindfulness, resilience, travel, vacation

Lacrimoso

Evelyn Herwitz · May 29, 2018 · 10 Comments

My grandfather’s violin is 108 years old. I learned to play it when I was in grammar school, and it has accompanied me everywhere I’ve lived for more than fifty years. This week, I am donating it to our public school system. Here’s why:

It was the summer between third and fourth grade when I first placed a violin under my chin. Our community was blessed with a robust summer music program. You could pick any instrument, borrowed from the school district, take lessons and play in a music ensemble. To the best of my knowledge, my parents only paid for private lessons. The rest was covered by local tax revenues. A long, long time ago.

I was among the shortest kids in my grade, and the violin I borrowed was a half-size. It was a hot summer, and I practiced those first scratchy notes in our unfinished basement, trying not to knock over my rickety collapsible music stand onto the concrete floor, playing for my father’s drill press, tool bench and table saw. Supposedly this was a way to stay cool, but I suspect my mother also didn’t want to listen to my novice efforts. It was creepy down there and not conducive to developing a love of the instrument, but I was an obedient kid and stuck with it. Plus, my older sister had already learned to play the flute, and I was not about to let her outdo me.

Persistence (and a dollop of sibling rivalry) paid off. By the time I had grown enough to manage a full-size violin, my father gave me his father’s instrument. Inside was a small, yellowed label that recorded its creation by one Samuelis Henricus Scheib in Nashville, Tennessee, on February 11, 1910. I played many pieces on that violin, auditions, solos, in chamber groups, All County Orchestra, and as first chair in our school orchestras as I got older.

For my sixth grade graduation, I played a solo accompanied by my teacher, Mr. Errante, on the piano, Meditation from Thaïs by Massenet. Near the end of the piece, there is a pause following a high harmonic, played pianissimo. The audience of parents, faculty and students broke into enthusiastic applause, and I can still see Mr. Errante beaming at me from his seat at the baby grand. I started laughing, but I managed to get through the final phrase, to a second rousing round of appreciation.

There were other memorable performances on my grandfather’s violin, including the first movement of Vivaldi’s Concerto for Two Violins and Strings in A Minor, played with my friend and orchestra seat-mate, Judy Parker, one summer with our student orchestra. I loved the bowing on that piece, a real workout.

Eventually, when I became concert mistress for our high school orchestra, Mr. Errante let me borrow the best violin that the school owned, and I set my grandfather’s violin aside. The tone was so far superior to what I had been able to produce on the family heirloom that I didn’t want to play it anymore. My senior year, I worked my way up to Mendelssohn’s Violin Concerto in E Minor. And that is as far as I got.

One of the reasons I chose the University of Rochester for undergraduate studies was my dream of taking violin lessons at the Eastman School of Music. But I never followed through. I played my grandfather’s violin in a chamber group on the River Campus a few times during my first semester, then set it aside. There were many complicated reasons why, including a romantic involvement with a guy who disdained the humanities as a waste of time—one of my great regrets. But I lacked self-confidence and was far too easily swayed by his strong opinions.

Even though I wasn’t playing it anymore, however, my grandfather’s violin travelled with me, a vestige of my former identity as a talented musician, a promise that I could always pick it up again. From Rochester to Pittsburgh to Springfield, Illinois, to Worcester, Massachusetts, it has moved with all the other trappings of my life and rested in its blue-velvet-lined case under my bed.

Over decades of neglect, the tuning pegs loosened, the bridge fell and the sound peg rolled around inside. When Al and I got engaged, he had it repaired as a gift. That was the last time I tried to play. Soon after, scleroderma claimed my fingers, and it was too late.

Still, I’ve held onto it, along with my favorite sheet music, for decades. It was just too hard to let it go—until Al recently made a decision to have his father’s viola, another family heirloom, repaired, for donation to the public schools through our local NPR affiliate. We’ve been listening to their PSAs for years, promoting the idea of giving unplayed instruments to the school system for students who can’t afford their own and want to learn. Nothing like a good role model.

Even still, I was hesitating to follow his lead, until one day about a week ago, when I woke up and looked at my post-surgery fingers and decided the time had come. We had it tuned with a set of student strings and the bow re-haired. When Al brought it home last week, I gently plucked the strings and held it under my chin one last time. Then I set it back in its case and said good-bye.

What’s the point of holding onto an instrument that makes no music? I have no more delusions that I will ever play the violin again. It’s time for my grandfather’s violin to find a new home. I hope it goes to a student who would otherwise never have had the chance to learn. And I hope whoever sets it beneath her chin will take good care of it, and pass it on when it’s time.

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, Touch Tagged With: hands, managing chronic disease, mindfulness, resilience

Devil in the Details

Evelyn Herwitz · May 8, 2018 · 2 Comments

I have a small pharmacy’s worth of wound care supplies in our bathroom closet. Various types of gauze, bandages, dressings, ointments, tapes, heating pads, you-name-it, it’s there, the cumulation of decades of experimenting. For my very sensitive finger ulcers, I’ve found one particular brand of bandages that work best—Coverlet. They make a range of sizes, and my favorites are 3/4″ x 3″. They come in boxes of 100, and I order 10 boxes at a time.

Usually, I manage to order more before I run out. But not this past week. I haven’t needed to use as many bandages daily since my hand surgery (fewer ulcers because all the trouble spots have been amputated), so I’ve gotten a bit lax about reordering. I also mistakenly thought I still had some left, because the boxes were stacked on top of some other Coverlet boxes of different sized bandages that I rarely use.

Oops. Big time.

The issue is that these bandages are made of very soft fabric; I have never found anything like them in stores. They breathe and are comfortable all day long. As soon as I realized I had used my last bandage on Friday morning, I ordered another set of 10 boxes and grudgingly paid a steep rush fee. But the soonest I could get a guaranteed delivery was by this Tuesday.

What to do? I spent about a half hour online, researching fabric bandages. Fortunately, I found some decent substitutes at Target. Years ago, I used to buy generic fabric bandages from CVS or Target, but then they changed the specs and the fabric was coated with some kind of stiffening compound that rendered them useless for me. It seems that, in years since, these generics are no longer coated. The offending substance apparently was Latex, which many people are allergic to.

A couple of small boxes of the generic bandages did the trick over the weekend, although my thumb ulcer was not terribly happy with the alternative; the surrounding skin seemed more irritated. Fortunately, my shipment arrived early, on Monday morning, just after I had finished getting ready for the day. It was well worth the extra time to remove the substitute dressings and replace them with my good bandages. Immediately, my thumb felt better.

Before I stored the boxes in the closet, I marked the bottom two: “Second to last/Reorder” and “Last Box!”

Sometimes, the smallest details make the biggest difference.

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.

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

A Matter of Distinction

Evelyn Herwitz · April 17, 2018 · 2 Comments

A friend asked me the other day, “What’s new?”

“It’s my birthday on Wednesday,” I replied.

“Oh, are you going to be 65?!” he asked, intending it as a jest.

“No, 64. But 65 would be great, because then I’d finally be eligible for Medicare,” was my rejoinder.

I certainly am looking forward to being relieved of the stresses and uncertainties of employer-based health insurance. But in the meantime, I’m also looking forward to my birthday tomorrow.

Al and I decided to celebrate this past weekend, staying overnight close to Boston for a special dinner out on Saturday night, a great performance by Berlin-based Max Raabe & Palast Orchester at Berklee College of Music, a wonderful brunch Sunday morning with Mindi, and on to an afternoon at the Museum of Fine Arts. I came home feeling celebrated and refreshed.

This, despite some really nasty, cold weather that precluded any chance to wear festive springlike clothes for the occasion. Instead, I decided to decorate my hands.

I haven’t worn any of the beautiful heirloom rings that belonged to my mother and grandmothers in many years. Why draw attention to my fingers? They’re so distorted, especially now, after all the surgery last fall. Or so I’ve told myself.

But Saturday afternoon, as I packed my bag, I reconsidered. Why not? The jewelry reminds me of women that I loved. Both my grandmothers were very elegant, with incredible fashion sense and strong, individual taste. My father’s mother always wore a beautiful opal ring, set like a flower with small opals as petals.

As I child, I wondered why she didn’t have a diamond ring like every other married woman I knew. But now I can really appreciate how distinctive a statement she was making.

So that’s the ring I chose to wear for my birthday weekend. I could only fit it on my left pinky, next to my wedding ring. The gold of one does not match the other. I didn’t care. It simply made me feel good to touch its detailed surface and remember her. It also felt good to assert to my own sense of style.

My fingers are certainly distinctive. And I have ring to match.

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.

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

Low-Tech Solution

Evelyn Herwitz · April 10, 2018 · Leave a Comment

One of the biggest challenges I face every day, especially during the winter, but also in transitional seasons, is keeping my hands warm. Temps need to be well into the 70s before I don’t have to offset my Raynaud’s spasms with layers of clothes.

For many years now, one of my best solutions has been fleece wrist warmers. My favorite brand is Wristies®, which are soft, affordable and come in multiple lengths, colors and styles. (And no, I do not get any kind of finder’s fee for promoting them. I just like them a lot and have a half dozen pairs that I mix and match with my outfits.)

But my Wristies, alone, are not really enough when the weather is cold or fluctuating. This fall, as I was trying to help my hands to heal from all the surgery, I hit on a low tech solution that works very well: I fold up the Wristie like a cuff and insert a disposable hand warmer.

I would have preferred something recyclable. But no reusable hand warmers that I found online were satisfactory. There are some brands that work on lighter fluid, which held absolutely no appeal. I tried a style that you snap to mix chemicals inside the plastic pouch to generate heat (you boil them to recharge), but they didn’t work. And I wanted something that was small, comfortable and long-lasting.

So that’s how I came upon Heat Factory hand warmers, which are packaged in pairs and come 40 to a box. When removed from their wrappers, they just need a little shake and last all day. I place the packs in the Wristie “cuffs” on the inside of my wrists, next to the blood vessels near the skin, and they provide gentle, steady heat that keeps my fingers nice and rosy, even when I’m typing.

The arrangement works best when I’m wearing a long-sleeved sweater with ribbed cuffs that I can pull over the Wristie, which helps to keep the hand warmer in place. I do believe this has helped me to avoid more ulcers over the winter (right now, only have one on my left thumb that is healing from yet another infection).

The other, obvious solution is exercise, of course. I must admit, I haven’t been moving as much as I need to in the cold weather. Have to get back to those daily walks. For solitary, sedentary work at my computer, however, as well as driving and even walking around on chilly days, this low-tech combo is win-win. Hope it helps you, too.

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.

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Filed Under: Body, Mind, Taste Tagged With: finger ulcers, hands, managing chronic disease, Raynaud's

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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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