Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Seeking Serenity

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We’re enjoying a short spate of glorious weather here in Central Massachusetts—lots of sunshine, azure skies, trees cloaked in flaming colors, comfortable days and crisp nights. A few days ago, I woke early and noticed that the moon had not yet set in the west. It glowed like a golden spotlight in the soft dawn, before the sun had risen. Just beautiful.

I’m trying to stay focused on these daily wonders and not go down the rabbit hole of my iPhone—all too tempting during this fraught run-up to the presidential election on November 5. I find it hard not to read everything I can about the potential outcome, all the twists and turns of the final weeks of campaigning, in a vain hope of divining the result ahead of time. It’s ridiculous, I know. Still, I scroll.

I am deeply, deeply worried about the outcome.

And so, I pray every day to find the calm in the eye of the storm. Maintaining serenity is the only way for me to think clearly. Not easy to do right now. But it’s also the only way to keep myself healthy. Meditation helps. So does taking walks in beautiful weather. And reminding myself of all the many, small miracles of existence that are so easy to take for granted.

So I pass this along to you, Dear Reader, in hopes that it will help you to find your own peace of mind in these complex and chaotic times. 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.

Bucket List Visit

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I have loved the art of Paul Klee for decades. His whimsy, brilliant use of color, and evocative abstract works are an endless source of fascination and inspiration. He is also a personal hero. During his last five years, Klee lived with scleroderma—and despite physical limitations, this was his most prolific creative period.

Born in Switzerland in 1879, raised in Bern, Klee studied art in Munich and eventually settled there in 1906. His imaginative works and art theory grew out of his involvement with Der Blaue Reiter group of German Expressionists, including Vasily Kandinsky, August Macke, and Franz Marc, as well as his travels to Italy and Tunisia, and his years during the Weimar Republic teaching at the Bauhaus and the Düsseldorf Academy. In 1933, the Nazis dismissed him from his post in Düsseldorf, and he was labeled a “degenerate” artist.

Klee and his wife, Lily, returned to Bern and lived there until he died at age 60 in 1940. I have long wondered if the trauma of exile, losing his close circle of fellow artists and his reputation, as well as the ability to exhibit his work, all contributed to his illness. His symptoms of systemic sclerosis emerged after a bout with the measles. I’ve asked my rheumatologist at Boston Medical about Klee, and while there is no clear answer to how he contracted scleroderma (same for all of us with the disease, even 90 years later), he explained the latest theories are that scleroderma is triggered by a virus. Another theory that I just discovered is that Klee’s exposure to certain chemicals in his oil paints and thinners may have been a contributing factor.

In any case, whenever I go to art museums, I seek out Klee’s works. So, this summer, after our very intense visit to Israel, we traveled to Switzerland for a few days in Bern to visit the Zentrum Paul Klee, the largest collection and archive of his art in the world—a visit at the top of my bucket list. I was hoping to see some of his famous paintings of abstract angels—playful, sorrowful, mysterious, comforting. Unfortunately, none were on display, nor any of his largest paintings. But the standing biographical exhibition did not disappoint, as I discovered some of his smaller works that I had only seen in books. And there were also three of Klee’s wonderful puppets that he made for his son, Felix. After we toured the museum, we walked around the Zentrum grounds, the sculpture garden, and paid our respects to Paul Klee’s grave.

Here are photos of a few of my favorite art works and the museum, as well as Bern from a scenic overlook at a different location. Hope you enjoy the view . . .

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.

Be Prepared

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Many years ago, I was a Girl Scout. That’s 15-year-old me in the middle, with the long pigtails and sunglasses, on a troop trip to D.C. in 1969. (And no, the Senior scout to my right is not smoking a real cigarette!) All that I vaguely recall about that trip, back in the day when Girl Scouts wore real uniforms and I was a Cadette scout, was that it was incredibly hot and humid. I’m sure we had fun. By that fall, however, I decided I’d had enough of scouting, though I don’t think it had to do with the trip. I just wasn’t interested anymo0re.

But I learned a lot in the half-dozen years that I participated, first as a Brownie and Girl Scout in elementary school (my mom was the troop leader), and then as a Cadette as a young teen. I gained some important life skills, including how to sew my own clothes, how to build a campfire, how to camp in a snowstorm, how to run a patrol (team), and how to plan. Our patrol in elementary school was called the Martians, and we definitely put on the very best skits of the entire Troop 151.

“Be Prepared” is, of course, the Girl Scout’s motto—or, at least, it was back in the day. Same for the Boy Scouts. And, notwithstanding the (not PC) Tom Lehrer parody of 1953, that motto is very much a worthy goal.

Which is why (here comes the thematic hairpin turn) I was really glad to discover last week that the new Covid vaccine was available locally, because we are soon going to be traveling again. Al and I both were able to get the jab, which did not hurt at all. I began to feel the vaccine moving through my system within minutes, however, and was a bit achy and tired for 24 hours. And that was it. This version was by Pfizer, which tends to be easier for my body to handle.

Covid is still swirling around us, and the uptick in cases is not to be dismissed. We had already gotten Paxlovid to take along, just in case either of us got sick on our trip, (once a Girl Scout, always a Girl Scout) and I’ll still pack that along with some Covid tests, but I am much less concerned about that potential problem now. I hope my experience encourages you, Dear Reader, to get your own updated Covid vaccine sooner than later. Well worth avoiding the virus, especially for those of us with compromised immune systems.

I’ll be offline for much of September, back by early October with tales of our adventures. 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.

Once in a Blue Moon

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If the skies are clear tonight where you live, you’ll have a chance to see an unusual astronomical phenomenon: a full moon for the second time in one calendar month. It’s called a blue moon, although the moon won’t actually look blue. More like a light tan. Still, the rare occurrence—which happens only every two or three years—is a metaphor for anything that happens, well, once in a blue moon.

Not only is this a blue moon, it’s a seasonal blue moon, because there will be four, not the usual three full moons during one season. It’s like getting an extra scoop of ice cream for free.

But wait, there’s more! This blue moon is even more special, because it’s also a supermoon, which appears to be larger than normal, because the moon is closer to the Earth than normal.

Super blue moons are even rarer than seasonal blue moons. According to NASA, the next convergence of a blue moon and a supermoon  won’t happen until January 2037.

The peak convergence was last night, Monday, but the phenomenon will still be visible to the naked eye through early Wednesday morning.

All of which is to say, in addition to record heat, crazy extreme weather, and more than enough to worry about, Nature also brings us some beautiful, unexpected gifts. Savor the magic.

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: Kian Lem

A Pain in the Back

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Last Thursday evening I went to a yoga class at a nice studio not too far from home. I’ve taken a fundamentals class there several times over the summer to try to improve strength and flexibility, with mixed success. But I had one more class left on my paid series, and I wanted to use it up.

Everything was going well for most of the hour-long class, with a nice meditation, sun salutations to warm up, cat-cows, child’s pose (I cannot do a downward dog because of the pressure it puts on my hands and wrists, so this is a substitution per one of the instructors), and a warrior two pose. Then our instructor had us move into a triangle pose, which is essentially a twisting side bend with your legs forming two legs of the triangle, one arm down next to your forward leg and the other arm raised to the sky. It was hard, and I couldn’t hold it while she went around the room answering questions. So I stood up.

And immediately realized I had injured my lower back. I was in considerable pain, to the point where it was very uncomfortable to walk back to my car. I chose not to say anything. I just wanted to get home and lie down.

Heat, ibuprofin, Tylenol, Aspercream, you name it, I tried it. By midday Friday I decided I needed to check with my PCP, and the geriatrics team recommended getting a lower back X-ray to rule out a stress fracture. I was able to drive to the clinic and carefully walk to the radiation department. The tech was sympathetic and I got through the procedure. Supposedly, it would be reviewed within a couple of hours, but no report appeared in my electronic medical record by the end of the day.

However, by Friday evening I was able to stand for about a half hour and help prepare dinner, so that was encouraging. By Saturday morning, I was feeling more mobile, though I rested a lot that morning and later afternoon. By Sunday, I was able to do my regular set of stretching exercises and drive into Boston to have a planned lunch with a friend and see my eldest daughter.

As I write on Monday, I still have some discomfort, but am basically back to my normal mobility. And the X-ray report came back negative for a stress fracture, though there are some age-related issues with osteopenia and thinning of cartilage between spinal disks. That would explain some of the low level discomfort I’ve had for the past few years. But thank goodness it wasn’t anything more serious.

And yet. For those few days when my mobility was really hindered, I felt quite vulnerable. The experience drove home the obvious fact that a strong back is essential for everything we do. I’ve never had back problems up to now, so I’ve taken my spinal health for granted. No longer. I’m not risking yoga again, but hope to get back to Pilates, which is excellent for strengthening core muscles and back support, this fall.

Meanwhile, I’ll keep tending my back and stretching and walking, for as long as I’m able.

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: Point Normal