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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Think Warm Thoughts

Evelyn Herwitz · January 10, 2017 · 1 Comment

It’s really cold out. My hands are not happy. Six ulcers on my fingers and a tenacious one on my left ankle tingle and smart. The good news: even though we’re in the teens today, by Wednesday, it’s supposed to go up to the 50s. Welcome to New England.

As I await the warming trend, it’s nice to remember our long New Year’s weekend in St. Petersburg, Florida. Were we really at the beach one week ago? I have the pictures to prove it. So, I share with you, Dear Reader, some highlights of our trip. I hope these bring a little warmth into your day. Enjoy. . . .

At the Dali Museum, which features the works of Spanish surrealist painter Salvador Dali, a special exhibit explored the life and paintings of Frida Kahlo, a 20th century Mexican artist who broke new ground for women painters. I found her life’s story especially moving: she suffered a serious accident at 18 that caused her great pain and many surgeries over her lifetime, but her art enabled her to find meaning in her struggles and to express herself in a universal language.

While Dali’s paintings of melting clocks and dreamscapes are his best known works, I preferred these two examples of his early paintings.

Outside the Dali Museum, visitors tie their entrance wristbands to a bedecked tree. The strips of colored tags luff in the breeze.

The Morean Arts Center includes a collection of glass sculptures by Dale Chihuly. His exuberant use of color and form creates a mesmerizing, whimsical kaleidoscope.

Around the corner, the Center includes a glass blowing workshop. We enjoyed the demonstration, which resulted in a free form glass bowl.

We met ibises in the afternoon . . .

. . . and pelicans at sunset.

St. Pete Beach offered a chance to relax and pretend that winter didn’t exist.

Back home, there is snow on the ground and ice on the sidewalks. It will all be gone by week’s end. I know there’s more on the way. I just need to remember . . . think warm thoughts.

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, Hearing, Mind, Sight, Touch Tagged With: finger ulcers, hands, managing chronic disease, mindfulness, Raynaud's, resilience, travel, vacation

Ain’t That a Groove

Evelyn Herwitz · December 27, 2016 · Leave a Comment

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Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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.

Image Credit: Hoàng Duy Lê

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Filed Under: Body, Hearing, Mind, Smell, Touch Tagged With: body-mind balance, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

First Snow

Evelyn Herwitz · December 6, 2016 · 2 Comments

img_2491It’s always a surprise, that first coating of white. This year, it arrived on Monday, just an inch, already melting by mid-afternoon. But the flakes fell softly in the morning, fat, puffy, like thousands of tiny parachutes drifting earthward. Clinging to evergreens, disguising flaws, the snow absorbed sounds as it fell, hushing the world, slowing all down.

Mid-morning, as snow continued to fall outside my window, I was on a video conference call with people in New York City (rain), the Catskills (snow) and the Netherlands (almost never snow). The two young daughters of the Dutch woman overheard us discussing the weather and asked to see. My client in the Catskills turned his computer around to give them a peek of his blanketed yard. Their eyes widened with amazement.

By early afternoon, I had to go to the post office to mail some packages. Should I wear boots? I tried to slip on my rain boots but had to pull them off again. A few weeks ago, I kicked myself in the inner left ankle, one of those slips of coordination that occasionally plague my stride. This has morphed into an ulcer, then a rash from bandage adhesive. I saw my podiatrist last week, who prescribed steroid ointment and compression socks, and explained how weakened veins in my ankles are exacerbating the healing process. Which is why I couldn’t wear the boots. I opted for walking shoes with good treads. I’m hoping the ankle will improve by the time the serious snow falls.

Two o’clock, when I returned home, the sun was shining, the snow compacting as it melted. My footprints revealed slate. I shed shoes for slippers, ate some soup, forbade myself from reading any more news and got back to work. I didn’t notice the sun setting and the darkness settling in.

Winter is coming, and cold, and ulcers, and more snow than I want to contend with. The days grow shorter and darker. Headlines weigh on my heart. But halfway around the world, two little girls giggled at the novelty of a world transformed by white. I did the same when I looked out my window Monday morning. Let there be Wonder.

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: feet, finger ulcers, managing chronic disease, resilience

Falling Leaves

Evelyn Herwitz · November 22, 2016 · Leave a Comment

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See how efficient it is,
how it keeps its shape—
our century’s hatred.
How easily it vaults the tallest obstacles.
How rapidly it pounces, tracks us down.

from “Hatred” by Nobel laureate Wisława Szymborska

Cruel words, cruel acts eddy and swirl in every corner of our country since Election Day. I await our president-elect’s forceful denunciation of the hate speech and hateful acts being committed in his name. Two weeks and counting.

I take comfort in the many acts of kindness and caring by everyday Americans to censor those who feel emboldened to say and do what they have apparently been thinking all along. This gives me strength.

I feel wary. Will I be a target of derision, with my long pinched nose and tight mouth and awkward hands that slow me up at the checkout counter, while others wait? It is not a question that I have ever considered before. When I was grocery shopping on Friday afternoon, a man with tattooed arms hovered nearby while I rang up my items at the self-checkout lane. He kept moving closer, then stepping back, impatient. He said nothing. He did not make eye contact as I moved to the side to finish packing my bag. Before the election, I would have simply thought he was in a hurry. Now, I am not so sure. Or, perhaps, I am the one who is judging him unfairly.

Fears hover beneath the surface of normalcy. Thanksgiving is coming and I don’t feel celebratory. But I want to. I want to enjoy the holiday with my family. So I turn my focus to my many blessings: my loving husband and adult daughters, the warmth that greets me when I step inside our home from the approaching cold of winter, our quiet street, supportive friends and community, my clients who entrust me to promote their good works, the freedom to express my own truths through my writing, my art.

I am grateful for our great country, for all its fault lines and bitter conflicts. We can do better. We must.

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.

Image Credit: Timothy Meinberg

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

Mending

Evelyn Herwitz · October 11, 2016 · Leave a Comment

My grandmother Elli was an expert seamstress. She learned from her father, a Berlin fashion designer during the 1920s. When she came to visit us in the spring, she would help me make doll clothes. One particularly striking outfit was a black-and-white houndstooth check dress with hand-sewn, red rickrack. My dolls were quite stylish. When I sewed my own senior prom dress, Elli was there to teach me how to insert a prick-stitch zipper. The dress no longer fits, but it still hangs in the back of my closet.

img_2440When Elli died, I inherited her huge, multi-tiered wooden sewing box, which included, among other treasures, tin boxes full of buttons. Over the years, I accumulated my own stash, a source of delight for my daughters as I worked on sewing projects at the dining room table. Buttons would become tiny plates and food, matching and counting games.

The sewing box is battered, now, sitting in our basement family room. But it still contains  wonderful traces of my grandmother—spools of silk thread that must be at least a century old, tiny cardboard tubes wrapped with various dark shades of darning thread for mending socks, black hooks-and-eyes sewn to a card.

I never learned how to darn, and I can no longer sew on buttons by hand without great difficulty—too hard to hold the button in place and manipulate the needle and thread. So I delegate that task. But I like to repair clothes. It’s a way of conserving resources and fighting back against our throw-away economy. I tackle any mending project with my trusty Viking Husqvarna sewing machine, which I purchased about thirty years ago and has never failed me.

The other day, my eldest asked if I could mend a favorite sweater that had gotten snagged, causing a seam to unravel. Ideally, it should have been crocheted back together, but that was out of the question. I wasn’t sure if I could fix it, but I promised her I’d try.

From decades of sewing, especially when my hands were more nimble, I have accumulated a thread collection that rivals the one I inherited from my grandmother. Sure enough, I had the right maroon thread to match the sweater. I pinned the seam back together, carefully unrolling the edges to align without losing any more knit stitches. I set the machine for a narrow zig-zag, to secure the seam without losing stretch. And I slowly stitched away, forcing the knit fabric toward the feed-dog so the seam wouldn’t sag.

I didn’t know if my method worked until I finished the seam—but it did. The inside edge is not as neat as the original, but the outside looks perfectly fine. One sweater saved. A small victory in a world so far removed from Elli’s day, when mending was not only a practical matter of conserving scarce resources, but also an art form.

At a time when so much seems so easily torn asunder, a worthy pursuit.

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-mind balance, finger ulcers, hands, 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…

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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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