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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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In Stitches

Evelyn Herwitz · October 3, 2023 · 2 Comments

It’s been five years since I last had calcium deposits removed from the bridge of my nose, the fifth time I’ve endured this procedure. Usually, I take care of this annoying issue about every three years, but the pandemic put that on hold this time around—which ultimately meant that the calcinosis got worse.

Originally, I thought the problem was caused by the weight of my glasses. I get calcinosis in my fingers at pressure points, so it made sense. But I switched from wire frames to very lightweight Silhouettes years ago, and it has not solved the problem.

No one really knows why scleroderma can cause this build-up of calcium in unwanted places. My theory is that, regardless of how thoroughly my ENT plastic surgeons have tried to remove the calcium growths from my nasal bone, a seed remains that grows more calcium crystals over several years. They always biopsy what they remove, and it always (thank goodness) is benign. In any case, once it gets big enough, it becomes unsightly and increasing uncomfortable, stretching skin that is no longer very elastic.

This spring I met my new surgeon, Dr. E., who is chief of Otolaryngology at Boston Medical (his predecessor had done the last three extractions). I liked him and his team immediately. He is thoughtful and conservative about performing a procedure that is either unnecessary or has low potential for success. In fact, he was at first reluctant to take me on, given how fragile the skin on my nose has become, but we came to a meeting of the minds, with a plan to do a skin graft if necessary to close the wound.

And that is what he and his resident did last Wednesday. I’d had to postpone the procedure twice over the summer, given unexpected schedule conflicts. During that delay the calcium had pushed through the skin, so I was managing an open wound and doing my best to avoid infection until we could finally take care of it.

Nonetheless, I was not looking forward to the procedure. Getting Lidocaine shots in your face is no picnic, and neither is having the bridge of your nose cut open and calcium deposits scraped out of bone. Then there was the added complication of the skin graft, which they took from below my left ear. And sewing me back together.

I’ve learned from past experience that I do not do well with Lidocaine mixed with epinephrine, which is a preferred concoction because it limits bleeding. So, instead, with plain Lidocaine they had to use a cauterizer, which, even with local anesthesia, feels like pins and needles, and sometimes like tiny darts. And it smells like burnt roast, which is, of course, essentially what’s happening.

This all took over an hour. I did my best to keep breathing evenly through the process. Some music from the High Holidays was a welcome ear worm. In addition to suturing the graft, they stitched a rectangular piece of gauze, called a “bumper,” on top of the graft to hold it in place for a week. That comes off, I sincerely hope, tomorrow. Between the stitches under my left ear and the bumper, I looked a bit like Frankenstein’s monster when they let me see my face in a mirror.

“Can I have something to cover it?” I asked.

“What did you have in mind?” asked the resident.

“A bandage?” It seemed rather obvious. His concern was that it not pull at the bumper to dislodge it in any way, but there was no way I was going to walk around with a piece of bloody gauze stitched to my nose for a week. So he found a light blue bandage, which I later replaced with one of my good cloth bandages, and I have been carefully tending it since. I also started antibiotics the day of the procedure to avoid infection. Pain has been easily managed with OTC meds.

So, this has been the every-few-years routine. Except, Dr. E told me when he finished, there’s not a lot of bone left where the calcinosis has repeatedly invaded. He was clear that this is the last time he would do such an extraction. If it grows back, which it most likely will, then we’re talking rhinoplasty. “Well,” I quipped, “at least I have a lot of nose to work with.”

And that is where I find myself after Extraction #5. It’s a lot to process. If the calcinosis re-emerges in a year or so, I may not wait until it begins to form a noticeable bump to undertake the inevitable. I’ll be 70 next April, and if I need major nose surgery, it’s better to do it sooner than later. In the meantime, I’m glad this round is done. And the immediate benefit: I can breathe better.

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: Anne Nygård

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Filed Under: Body, Mind, Smell, Touch Tagged With: body image, calcinosis, COVID-19, managing chronic disease, mindfulness, resilience

Enter Fall

Evelyn Herwitz · September 19, 2023 · Leave a Comment

It is rainy and chilly and dreary as I write on Monday afternoon. Here in Central Massachusetts, we were fortunate to avoid the worst of Hurricane Lee over the weekend, and the rest of the week looks sunny. But I’m feeling the chill in my hands today, knowing that fall officially begins this Saturday.

Already, the days are notably shorter, the transition even more striking since we came back from the Baltics, where the sun sets later because it’s farther north.

And so, it’s time to make my annual adjustment, mentally and physically, to inevitable colder weather. I should be used to it by now, but I always hate to bid summer adieu. Time for lined leggings and sweaters and wrist-warmers, heavier coats and gloves and hats, more effort to get dressed and out the door.

Sigh.

At least there is fall foliage to look forward to. That, and crisp air, and fewer mosquitoes, and the way that autumn light etches shadows. Even as leaves begin to drop and trees harden off for winter, new buds are forming. My hands will adjust as I remind myself: Only three more months until the pendulum swings and the days grow longer, once again.

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: body-mind balance, finger ulcers, managing chronic disease, mindfulness, Raynaud's, resilience

Barbie Land

Evelyn Herwitz · August 15, 2023 · 4 Comments

On Sunday, my older daughter and I went to see Barbie, which, in case you’re not into pop culture, is a movie by director Greta Gerwig about the iconic fashion doll’s existential identity crisis when she confronts the “real” world. Starring Margot Robbie as Stereotypical Barbie and Ryan Gosling as Ken, the film opens with an homage to Stanley Kubrick’s 2001: A Space Odyssey and romps off from there. It’s a hoot. We had a great time.

There’s been a host of critics who’ve reviewed the summer blockbuster, predictably commenting from either side of our culture divide about Gerwig’s feminist message. But I’m not going to get into that here. What I want to write about is one of the underlying notions of the film, that Barbie has been an aspirational toy for young girls since the ’60s, with all kinds of Barbies cast as everything from astronauts (1965, way ahead of NASA) to astrophysicists. Apparently toy-maker Mattel has created more than 200 jobs for Barbie, including U.S. President.

Years ago, when my sister and I played with her Barbies and my Ken doll, that phase of Barbie Land did not yet exist. This was in the early ’60s. We created doll rooms in the bottom three shelves of a bookcase that our dad had built years prior, originally to store his huge LP record collection. The furniture didn’t fit the dolls’ proportions, but we didn’t care much. We were more interested in the family intrigue that my sister would narrate, particularly the conflicts between ponytail Barbie (one of the originals, and yes, she came dressed in that black-and-white strapless bathing suit and sunglasses) and bubble-cut Barbie (bouffant blonde hair), whom my sister named Alice and deemed Barbie’s evil twin.

I could not keep up with my sister’s plots and offer my own. She was an avid reader and two years older, and she came up with all kinds of story lines that were beyond me. I don’t recall much else, other than I preferred to change Ken’s outfits (already, I loved fashion) more than figure out what was going to happen next.

And the clothes were fabulous. Back then, they were made from beautiful fabrics, satin and wool and cotton, with tiny working metal zippers and miniature buttons. No synthetics. Real pleats in Barbie’s tennis skirt and satin stripes on Ken’s tuxedo.

My Ken was not one of those dolls with the plastic molded blonde hair. No, he had brown flocked hair, which unfortunately rubbed off when I struggled to put on his red football pads under his red-and-white football jersey. So I occasionally would repair his bald spots with a burnt sienna Crayola crayon, which seemed to do the trick.

Eventually, I got Skipper (Barbie’s little sister), and she was fun to play with, but Ken was always my favorite. My sister got Midge (Barbie’s best friend), but unlike the later version of that Mattel doll, who apparently was supposed to be pregnant, this Midge had the same voluptuous figure as Barbie, reddish brown hair with bangs, and freckles.

Our dolls could not move their knees or elbows. They could wave their arms up and down and do splits, but when they sat, their legs went straight out. Often, they’d fall to one side, seated.

It didn’t matter. I enjoyed the clothes, and my sister made up dramatic, entertaining stories that had nothing to do with Barbie’s careers. And when the time came to move on from Barbie Land, we packed each doll and outfit into individual plastic bags and stored them carefully. I inherited the collection, with my sister’s blessing. Our daughters—especially our younger daughter—enjoyed playing with them. And now they are stored in a large plastic box under a bed. I’ve been wondering if it’s time to sell them, given the Barbie craze. But I’m not sure if I’m ready to let them go.

P.S: Just a note, if you’ve read this far (thank you!), that I’ll be taking a break for the next three weeks. Enjoy the rest of August and see you in September.

Image: “Barbie’s first clothing designer Charlotte Johnson posing with 1965 Barbie doll model,” by Nelson Tiffany, May 13, 1964, UCLA Libary Digital Collections.

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 Tagged With: body-mind balance, mindfulness, resilience

Off Kilter

Evelyn Herwitz · August 1, 2023 · 4 Comments

I lost a friend last week. Joanna battled a deadly form of cancer, mesothelioma, for more than three years, with incredible courage, strength, pluck, and humor. She survived a high risk research trial this past spring that initially seemed to shrink her tumors, only to have them rage back within weeks. She had just begun another research trial, but the cancer had progressed too far. She died, surrounded by loved ones, Wednesday night. She was only 47.

When I learned the news from her husband’s heart-wrenching post on her Caring Bridge journal Thursday morning, I felt gut-punched. As her rabbi said at her funeral on Sunday, how could someone with such a powerful will to live be gone? It made no sense. It felt so wrong. A friend wrote in the comments to her husband’s message that a light had gone out in the universe. I felt the same.

I met Joanna nine years ago in a Jewish text study class. We were exploring Mussar, teachings and practices about different “soul traits,” such as compassion, patience, gratitude, order. As is the way in Jewish text study, we each had a study partner, and Joanna and I became a pair.

One afternoon in November, the two of us went to the local art museum to dig into the week’s soul trait, balance, which involves moderation, finding the middle path between extremes. Being not only a ballerina, artist, and yogi, Joanna also held a PhD in astronomy. As we wandered through the galleries, seeking ways to understand the meaning of balance, she brought a unique set of ideas to our conversation. Fortunately, I had written everything down in a journal, which I found Sunday after returning home from her funeral.

Rereading those notes, I felt as if she were still there, telling me just what I needed to hear after days of feeling so off kilter—that balance is not a static state. When you balance on one foot, it’s a process of constant readjustments, minuscule shifts in muscle and bone. Maintaining balance requires the offsetting of opposing forces. Physics dictates that both are necessary. Gravity, explained Joanna, causes all planets to be spherical, because gravity pulls mass toward a central point. And, we concluded, centeredness is essential for wholeness.

My notes of our conversation also reminded me that balance does not mean moderate amounts of everything. Achieving balance is different for each individual, a little of this, a lot of that, a combination of all factors in their proper relative proportions. And it’s not, by definition, symmetrical. The best example: a Calder mobile.

Unlike Joanna, who could balance so gracefully en pointe and hold perfect yoga poses, I can barely stand on one foot without falling. But I know exactly what she meant by all the tiny muscular adjustments that my foot and leg try to make to hold still. Balance is most certainly not a steady state. Even Calder mobiles flutter and twirl with the slightest movement of air.

In the weeks and months to come, when I think of Joanna, I’ll be thinking of all that I learned from her as I try to regain my sense of balance. She was a great teacher, at heart. She still is. May her memory be for a blessing.

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: Colton Sturgeon

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

Art in the Park

Evelyn Herwitz · July 25, 2023 · 2 Comments

What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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: body-mind balance, 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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