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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Sight

Harbingers of Spring

Evelyn Herwitz · April 11, 2023 · 2 Comments

At last, the weather is warming here in Central Massachusetts, and we’re turning green again. I’m always struck by the subtleties of early spring, how the tiniest buds and flowers emerge before I notice. And then, all of sudden, so much color. It always gives me such a lift.

You don’t have to go far to find these verdant harbingers. Here are a few glimpses from around our home. Enjoy!

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: Mind, Sight, Smell Tagged With: beauty, body-mind balance, mindfulness

Auf Wiedersehen

Evelyn Herwitz · March 28, 2023 · 8 Comments

And so, I made the trip to Germany. On my own, abroad, for the first time in my life. It was an extraordinary, transformative experience, not only for all that I saw and learned, and all the people I met along the way, but also for rediscovering that fearless explorer within, who has been hiding for decades since I first heard the word scleroderma.

As I’ve written here in recent months, the past couple of years with this disease have been more complicated. Finding myself suddenly short of breath when physically or emotionally stressed led to a battery of diagnostic exams, and ultimately a diagnosis of Type 2 Pulmonary Hypertension. Thanks to my wonderful cardiologist, I found a calcium channel blocker that works for me and mitigates the worst of the symptoms. I’ve also learned some new breathing techniques that help to avoid the problem when I start feeling stressed.

With all that, as I began to feel better again and moved past the worst of the pandemic, I felt a great need to get out—get out of my head, get out of my routine, and get out of the country to travel once more. I needed to prove to myself that I could do this on my own. Working on a novel about Germany during the Weimar Era and rise of the Third Reich, I had to see what I’d only been able to read about, and I needed to focus. I have family roots in Germany, as well. My mother and her parents immigrated to the U.S. in 1936 to escape the Nazis. So the visit was multi-layered.

As is always the case with travel, not everything went as planned. On both ends of my trip, I had to make last minute changes in my transatlantic flight—pushing back my departure from Boston by two days to avoid a Nor’easter that was threatening to wreak havoc with snow and high winds, and leaving a day early at the end when my flight home from Munich was cancelled due to a planned airport strike. (Yes, they plan strikes there, so you can work around it.) There were also two instances when the S-Bahn (commuter rail) in Berlin was running late or disfunctional, and I had to figure out how to grab a taxi to get to a tour on time. But it all worked out. And, to my amazement, I just rolled with it and problem-solved along the way.

For the most part, however, the trip was a wonderful journey, beginning with my seat mate on the way over, who was from Munich and gave me excellent suggestions for my two-night layover there. From Munich I flew to Berlin, where I stayed five nights in the very funky Hotel-Pension Funk, the former home of a silent film star that is decorated in period Art Nouveau style. I immersed in history, art, design, and architecture, including a visit to the Museum der Dinge (Museum of Things), where I learned about design standards as the country shifted from handcrafts to industrial manufacturing, and an outstanding private tour of sites and stories about Weimer Berlin. I also had dinner one evening with good friends and spent a day touring with them, as well.

From Berlin I traveled by train to Dessau, just under two hours southwest of Berlin, to stay at the Bauhaus, now a UNESCO World Heritage site. The Bauhaus School was in existence from 1919-1933, first in Weimar, then in Dessau, and finally for a brief period in Berlin before it closed under Nazi pressure. Founded by architect Walter Gropius, the Bauhaus melded art and technology to rethink how people could live and work humanely and cooperatively in post WWI society. I stayed two nights in what had been student housing, and toured the building as well as the outstanding Bauhaus Museum in the city.

From Dessau, I took a high speed train back to Munich, where I stayed at a small, very comfortable modern hotel in the Altstadt (Old City). My time in Munich at the beginning and end of the trip focused on why and how the Nazis formed there and gained power under Hitler. In both Berlin and Munich, I also visited concentration camp memorials—Sachsenhausen outside of Berlin and Dachau outside of Munich. Both tours were powerful experiences, sobering, profoundly thought-provoking. There is much dark history in Germany, but also a deep public reckoning with the past.

In Berlin, on Shabbat, I went to a synagogue that was a short walk from my hotel. The Pestalozzi synagogue was burned on November 9, 1938, on what has been called Kristallnacht, the Night of the Broken Glass, but is now referred to in Germany as the Reichspogrom—a more accurate description of the two nights when Nazis directed the destruction of synagogues and Jewish-owned businesses in pogroms throughout the country. Pestalozzi was not totally destroyed (burning it risked a neighborhood that the Nazis wanted to save) and was restored and rededicated after the war in 1947. It is a beautiful building, and the service felt much like ours at home.

Later, I realized that I was the first member of my family to set foot in a Jewish house of worship in Berlin in a century. It was one of the most important moments of the trip. I am still processing all that I experienced, and will be for some time. I am glad to be home, but I was also sad to leave. Most of all, I’m grateful to my dear Al, our wonderful daughters, many friends, and my entire medical team, who fully supported me on this adventure, and for the fact that I was able to thrive on my own.

Here are just a few images from my travels.

Nymphenburg Palace in Munich, where I walked the grounds to stay awake after my transatlantic flight.

 

Hotel Laimer Hof, my accommodations in Munich at the beginning of the trip

 

The breakfast room at the Hotel-Pension Funk in Berlin

 

Dishes and utensils at the Museum der Dinge, which reminded me of my grandmother’s china and flatware

 

TV sets at the Museum der Dinge

 

Starving Sachsenhausen prisoners drew this on the walls of the camp kitchen’s potato peeling cellar.

 

Berliner Ensemble, formerly the Theater am Schiffbauerdamm, where Bertolt Brecht’s and Kurt Weill’s Threepenny Opera debuted.

 

Inside Friedrichstadtpassagen shopping center, former site of two famous clubs, the Weisse Maus and Cabaret of the Nameless

 

Theater des Westens. The basement housed the Tingel-Tangel Cabaret, which performed biting satire of the Nazis even for a few months after Hitler became Chancellor in 1933.

 

At the Berlin Hauptbahnhof, waiting for my train to Dessau

 

The Bauhaus in Dessau, view of the Studio Building where I stayed

 

Costumes for a Bauhaus dance performance, at the Bauhaus Museum in Dessau

 

Weaving at the Bauhaus Museum by Gunta Stöltz (1928), rewoven/restored by Katharina Jebson (2022)

 

Student notes from a Bauhaus class with Paul Klee, Bauhaus Museum

 

Bike rack on the high speed ICE train to Munich

 

The Neues Rathaus (New Town Hall) in Munich

 

Munich memorial to victims of the Nazis

 

Public mural in Munich

 

Memorial to prisoners at Dachau Concentration Camp Memorial Site

 

Commemorating those who died at Dachau

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 Tagged With: anxiety, managing chronic disease, pulmonary hypertension, resilience, vacation

Anticipation

Evelyn Herwitz · March 7, 2023 · 4 Comments

If all goes according to plan, next week I will be traveling to Germany to research my second novel. (Where is the first novel, you might ask? It’s in search of a literary agent, a long process. Details at my author’s website.) The second novel is set in Germany during 1928-1938, and I’m heading for Berlin, Dessau, and Munich. As we all know, when it comes to travel (and life in general) the adage “Man plans, God laughs” is often apt.

So, fingers crossed.

This is the first time I have ever ventured abroad on my own. I never traveled as a teen or young adult, with the exception of a two-week, whirlwind trip with my sister in 1973, a gift from our grandmother, who wanted us to see her German homeland and get a taste of Europe. We traveled by Eurailpass, back when it was really cheap to go First Class, from London to Berlin (we took the train-ferry across the English Channel to Belgium, then flew into Berlin since access was limited because the country and city were still divided), and on from Berlin to Copenhagen, Amsterdam, Zurich, and Paris. We stayed in youth hostels, dragged our suitcases everywhere, saw a lot, but decided to come home a few days early because we were totally exhausted.

In recent years, Al and I have traveled to Israel and made several wonderful trips to Europe, plus a lovely visit to Canada this past summer, and I’ve gained a lot of experience with travel planning. With this trip, I’m putting all of that to good use. I’ve cleared my plan with my entire medical team, who have been universally supportive and encouraging. And Al and our daughter are, as ever, supportive, too.

After all the restrictions of the pandemic and the past couple of years trying to figure out what exactly has been going on with my heart and lungs, I am both grateful to be feeling up for the adventure and trying my best to stay healthy prior to and during my travels. More than just a trip I’ve been dreaming of for several years and planning for months, this is a personal-best challenge to myself. I need to know, as I approach my 69th birthday next month, that I can just do it.

So, if all goes according to plan, I will be taking a break from writing here for a few weeks. I hope to have some great stories and photos to share when I’m back at the end of the month. In the meantime, Dear Reader, be well.

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: Stefan Widua

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, finger ulcers, managing chronic disease, mindfulness, resilience, stress, travel

Oscillations

Evelyn Herwitz · February 21, 2023 · Leave a Comment

It’s that time of year here in New England when the temperatures ripple like a sine wave. One day it’s in the 40s, then we slide into the 30s and even the 20s, then up to the 50s. As I write this afternoon on President’s Day, it’s a relatively balmy 54°F. Later this week we’re expecting snow showers, and the weekend promises to be frigid.

Al is more sanguine about this than I am. “It’s winter,” he says, with a shrug.

So I layer up my sweaters and shed them as warranted. My fingers are cracking, like a sidewalk that shrinks and expands with winter’s thaw. I’m using up more bandages, as I always do this time of year.

The transition to spring is always the toughest on my digital ulcers, harder than in the coldest months, when the cold is more constant. At least, it used to be. With climate change comes more temperature ups and downs. A geographer friend once told me that our weather here in Massachusetts will become more like Virginia’s, and Maine’s will become more like ours used to be. His prediction seems prescient. So far, we’ve only had one short stretch of Arctic temps this season and hardly any snow.

I am profoundly concerned about the implications of a warming planet and am devoting volunteer hours to my city, helping to mitigate the effects of climate change locally. But, I must admit, my hands don’t mind. It’s selfish of me, but these milder winters are just easier to manage, without our having to move south. The transition to spring and summer will always be a challenge, because it’s the relative temperature change that plagues my ulcers. But shorter spurts of bitter cold? Less snow and ice? I’ll take it.

Life is a series of adjustments. Some we can predict. Others, we can’t. The older I get, the more I realize that staying nimble in the face of all that we can’t control is crucial to resilience.

And so, with just one more week of February ahead, as daylight grows notably longer and the switch to Daylight Savings Time looms on the horizon, I will continue to layer up and shed and layer up again, tend my fingers, and make sure I have a full inventory of bandages and other dressings. I can’t change the weather, but I can surf the sine waves.

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: Pittigrilli

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

Candy Heart Wish

Evelyn Herwitz · February 14, 2023 · Leave a Comment

It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:

BE WELL

Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.

Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.

There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.

In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.

So, happy Valentine’s Day to all. Be well.

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: Laura Briedis

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Filed Under: Body, Mind, Sight, Taste Tagged With: body-mind balance, 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…

Blog Archive

Recent Posts

  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break
  • Threading the Needle

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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