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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Walk This Way

Evelyn Herwitz · August 18, 2015 · 1 Comment

Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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.

Photo Credit: Francesco Maglione 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: exercise, feet, managing chronic disease, mindfulness, resilience

Postcards from Europe

Evelyn Herwitz · August 4, 2015 · Leave a Comment

Five countries, seven cities, 14 days. We’ve been home more than a week, but the memories of our trip through Europe resonate deeply. From Berlin to Achern, Germany; from the World War I battlefields in the Vosges Mountains of Alsace to a boat ride along the Seine in Paris; from beautiful Brugge to Flanders Fields, Belgium; from the Imperial War Museum in London to the resting place of Lusitania victims in Cobh (pronounced Cove), Ireland–we traveled by plane, train, bus, subway, car and foot to do research for my novel in progress, set in 1915 during the Great War.

And we made it. I was exhausted, yes, by all the travel. I dealt with a bout of cellulitis in my right foot at the beginning of the trip (thank goodness for antibiotics). I didn’t get enough sleep. But it was magnificent. Al and I found our way, with the help of many angels, to each destination, were blessed with the hospitality of good friends, stayed in wonderful accommodations on a budget (highly recommend AirB&B if you haven’t tried it), ate great food, and enjoyed the trip of a lifetime.

We’re grateful we could go. And dreaming of our next adventure. Here are just a few highlights . . .

Berlin balcony
Berlin balcony
Baden-Baden, Germany
Baden-Baden, Germany
Trenches  at Hartmannswillerkopf, Vosges Mountains, Alsace, France
Trenches at Hartmannswillerkopf, Vosges Mountains, Alsace, France
Storks in Munster, France
Storks in Munster, France
Cathédrale Notre-Dame de Strasbourg, France
Cathédrale Notre-Dame de Strasbourg, France
Cathédrale Notre-Dame de Strasbourg, illuminated at night to show original colors
Eifle Tower, Paris, from the Seine River
Eiffel Tower, Paris, from the Seine River
Six flights up to our walk-up in Paris
Six flights to our walk-up in Paris
Medieval buildings in Brugge, Belgium
Medieval buildings in Brugge, Belgium
Poppies in Flanders Fields, Belgium
Poppies in Flanders Fields, Belgium
London, West End, near Ealing-Broadway
London, West End, near Ealing-Broadway
Parliament and Big Ben from the South Bank, London
Parliament and Big Ben from the South Bank, London
Our first view of Ireland
Our first view of Ireland
In Cobh, Ireland
In Cobh, Ireland

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 Tagged With: resilience, travel, vacation

Fly Away

Evelyn Herwitz · July 14, 2015 · Leave a Comment

When we moved into our home 16 years ago, one of Al’s brothers gave us a squirrel-proof bird feeder as a house warming gift. Last month, we finally hung it on the Norway Maple in the back yard.

Our delay was due, in large part, to Ginger. A frustrated huntress her whole life (she was, after all, a Golden Retriever), she would have had conniption fits with so many birds in the back yard. Now, with her gone, it’s time to give wildlife its due.

birdsAnd so, my morning’s entertainment, as I eat breakfast, is to watch the birds at the feeder. This is, without question, one of the best antidotes to stress that I have ever discovered. For me—not for the birds.

In fact, our backyard feeder has become quite the point of contention. A blight of house sparrows (yes, “blight” is the actual term for a group of them, or, if you prefer, a “humiliation”) has taken over the feeder. I had no idea they were so aggressive. They have batted away chickadees and house finches and scared off nuthatches. No cardinals have visited the feeder yet, despite the fact that we’ve filled it with black oil sunflower seeds (which house sparrows supposedly don’t like—not true). Morning doves, being ground feeders like their pigeon cousins, clean up what drops below, along with a chipmunk.

I can vouch for the manufacturer’s promise that the feeder is squirrel-proof. One particularly inquisitive gray squirrel has tried numerous ways to get at the seeds (I know there’s something in there!) by climbing all around it, and even going so far as to grab and pull down the springy perch. But so far, it hasn’t found a way to get the goods (though I must say, as a former psych major, the squirrel’s attempts are a fascinating study in learning styles).

The feeder’s hopper is full. When we return from our vacation at month’s end, I wonder how much will be left and if the sparrows will still dominate. Maybe the house finch, with its beautiful scarlet head feathers, will have finally told them off. Either that, or we’ll have a lot of house sparrows nesting in our eaves.

Meanwhile, as I make final preparations for our European travels, checking off items on to-do lists that seem to propagate over night, trying to plan for every possible health-related contingency and knowing that I will just have to deal with whatever happens, scrambling to finish off work for clients and my sewing and last-minute purchasing, I will continue to watch the birds and cheer for the house finch, which grabbed a few seeds while the sparrows weren’t looking.

If all goes according to plan, as you read this, we will be in Berlin, the first of seven cities on our complicated itinerary that takes us from Germany to France to Belgium to England to Ireland. All in the name of research for my novel and visits with friends and, yes, adventure.

Time for a break from blogging. Whatever your own summer plans, I wish you well. See you in a few 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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, resilience, travel, vacation

Plant a Seed

Evelyn Herwitz · June 30, 2015 · 8 Comments

In Australia, the sunflower has become the symbol of scleroderma awareness—because those of us with the disease feel better in the warmth of the sun. I like this idea a lot. Enough, in fact, to consider trying my hand at planting some sunflowers, if not this summer, then next.

1428247_41776650Yesterday, on June 29, scleroderma associations around the globe marked World Scleroderma Day. In nearly two dozen countries in North America, Europe and Oceania, a month of awareness-building culminated with a host of activities, from hospital presentations and meetings of scientists to art gallery exhibitions and a social media series of 25 second videos, in recognition of the estimated 2.5 million people diagnosed with scleroderma worldwide. Today, June 30, the need for a cure will be presented to the European Parliament in Brussels.

June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s later work was strongly influenced by his disease, even as his last few years were among his most prolific.

Paul Klee’s legacy helped to inspire the formation of the World Scleroderma Foundation, which is based in Basel, Switzerland, and draws together world experts in scleroderma research and patient groups in an effort to support research for a cure. The WSF’s lead patron is Klee’s grandson, Alexander, and his family.

While 2.5 million individuals with scleroderma represents just a sliver of the world’s 7.3 billion people, The WSF makes a compelling argument for the importance of scleroderma research on its website: Not only is the search for a cure needed for the millions who suffer from the disease—most of whom are women of childbearing age—but also scleroderma is a “linchpin disorder”: 

A breakthrough in understanding scleroderma would doubtless have a strong impact on many other diseases involving abnormal scarring and blood vessel injury. This might include conditions as diverse as interstitial lung disease, intestinal hypomotility disorders and many illnesses with blood vessel injury as their basis.

Which brings me back to sunflowers. Each sunflower head can contain as many as 2,000 seeds, each of which, in turn, with the right soil, sun and moisture, becomes another sunflower. If we could find a cure for scleroderma, imagine how many other millions of people who struggle with related diseases could be helped, as well.

Plant a seed to find a cure for scleroderma. Visit wolrdsclerodermaday.org to see what’s going on around the globe in support of research for a cure, or make a donation here in the U.S. to the Scleroderma Research Foundation or the Scleroderma Foundation. We’re all in this fight together.

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: Scleroderma Foundation, Scleroderma Research Foundation, World Scleroderma Day, World Scleroderma Foundation

Pep Talk

Evelyn Herwitz · June 16, 2015 · 4 Comments

No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body image, body-mind balance, exercise, feet, 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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