Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

What Next?

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Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano

Serenity Break

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I am way over the top with too much stress in the world. I suspect you are, too. So last Friday, I was very glad to attend a meeting at a beautiful Massachusetts Audubon sanctuary. This was a gathering of people who are working on ways to mitigate climate change and engage our communities in sustainable, resilient practices, not just in our home cities and towns, but for our entire county in Central Massachusetts. Always good to get together with good-hearted, civically involved folks who are committed to improving our neck of the woods.

But the best part of the meeting was the setting. You don’t need to drive far here to get out of the city and find some beautiful scenery. And in this case, grazing sheep.

So, Dear Reader, I share with you this picture I took, to remind myself of the wonderful, calming a-h-h-h I felt, being there. Hope it gives you a window of calm, 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. Please view Privacy Policy here.

Checking Up

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Since I’ve returned home from our trip to Germany, I’ve had a lot of doctor’s appointments. Not because I’ve had an emergency or other complications. Just because my schedule fell out this way. Every so often during the year, the appointments stack up, like planes over Logan.

So, I’ve had an echocardiogram at BMC, a follow-up with my periodontist about my tooth extraction and pending implant, a check-up with my BMC pulmonologist #1 who follows me for interstitial lung disease, a check-up with my NP gynocologist, and a meeting with my new local rheumatologist, since my previous one left the practice. Later this week I have a check-up with my BMC rheumatologist, and next week appointments with my BMC pulmonologist #2 who follows me for Type 2 pulmonary hypertension, and with my podiatrist on the South Shore who saves my feet. I have a bookmark sticky note in my planner to remember to schedule a few tests for the fall, before the next round of visits.

Then I get a break for a few months, assuming all goes well.

It’s a lot of driving and time, and it can get tedious and exhausting. This is a complex disease that involves a lot of details and coordination of care. But I’m grateful that I have an outstanding team in place here at home and an hour-or-so-depending-on-traffic-away in Boston and environs. I’ve been dealing with scleroderma and its various manifestations for more than four decades, so it’s just all part of the rhythms of my life.

I’m also grateful that our gerontology team makes house-calls.

Stay well, all.

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: Kelsy Gagneben

How I Spent My Spring Vacation

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I’m back home since last Tuesday night, back on East Coast time, and nearly caught up on sleep, after an intensive 12-day journey with Al to Germany. As is my way, I packed a lot into our itinerary, based in part on more research for Novel 2, which is set in Weimar Germany, and in part on things I’ve always wondered about and wanted to visit, and in part on catching up with good friends there.

We flew direct to Frankfurt-am-Main, Germany’s financial center, and used it as a hub for day trips by train to various points of interest, including Kassel, home of the Brothers Grimm for most of their adult lives; the Rhine River Valley, speckled by castles, hillside vineyards, and lovely towns; Worms (pronounced Vorms, rhymes with forms), which was a famed center of Jewish intellectual life in the Middle Ages and is home to the oldest Jewish cemetery in Europe; and Heidelberg, a renowned university city and site of castle ruins.

From Frankfurt, we took the 4-hour high speed train to Berlin, and had a guided tour of the Schöneberg district, where my mother grew up around the corner from Albert Einstein, and the location of JFK’s famous “Ich bin ein Berliner” speech in 1963; visited a variety of spectacular museums, where we saw art by Paul Klee and Gerhardt Richter; as well as learned about life in East Berlin and under the surveillance of the Stasi secret police. We also visited a wonderful puppet museum with an extraordinary collection and curators who filled me in on some history I’d been seeking.

On top of that, we had a lovely and meaningful visit with our friends, who treated us to delicious meals and took us to another beautiful and historic Jewish cemetery, the largest in Europe. Last Monday we took the train back to Frankfurt, stayed overnight, and then flew home. I was exhausted, but it was well worth it. And that’s the very short version of our travels.

What do all these things have in common? I’m thinking a lot about German folklore and how it informed culture and society in the 1930s, as well as the heritage of German Jewish communities. I’m also thinking a lot about art and censorship, which are central to my novel. And I’ve always wondered about castles on the Rhine. Fun fact: they were built by princes who wanted to collect tolls from ships traveling up and down the river—the very definition of robber barons.

I’m still processing all that we explored. I will be thinking about this trip for a long time. Grateful we could go and return home safely. Here are just a few pics of what we saw. 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.

Taking a Break

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I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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: David Clode