Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Stand Up Act

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I’ve been thinking a lot about my posture, lately. Back in May, after I performed a scene from The Glass Menagerie as the culmination of my spring adult acting class, I watched a video of same and was dismayed to see how stooped I’ve become. Some of this is just due to aging, loss of elasticity, and my shrinking spine cartilage. But I also observed how I pull myself inward physically, a deep habit of protecting my hands. While others may not notice this, it was quite striking to me.

Nothing like watching yourself on video to get a reality check.

Ever since, I’ve been trying to remind myself to stand up straight, both to improve my overall health (the more I stoop, the more my whole body feels out of whack) and mental attitude (facing the world head-on). It’s getting a little bit easier, but my slouchy stance is like a strong rubber band that snaps back.

So, I’m going to try Pilates again. The last time I took a class was before Covid, probably even a few years prior to the pandemic. A couple of years ago, I tried yoga, only to throw out my back. It took weeks to recover, and I never returned. I used to enjoy Pilates, especially using the reformer equipment, and I really need a way to strengthen my core.

I found a studio that’s closer than the one I had been attending the last time, and my free intro half-hour is this Thursday. This studio also seems to have a really good range of classes for all skill levels, so I can work my way back into it. Only one problem: They don’t post their rates. Which I don’t like. This studio is part of a franchise, and obviously they want to hook you in with a free trial rather than scare you off with high prices.

So, I’ll just have to try it out and see if it’s worth whatever they are asking. I have enough experience with Pilates to know good instruction when I find it. And my health is priceless.

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: Joyce Hankins

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.

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.

And Just Like That . . .

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For weeks now, my bonsai, a Brazilian rain tree that I have been cultivating for nearly four years, now, has been shedding leaves. While some of this is to be expected—it’s a deciduous tree, after all—it just seemed out of the ordinary. Nearly every morning, I’d discover more yellow amidst the emerald green.

Was I watering it too little? Too much? Was my bonsai upset with the cold weather? The heat pump? Had I lost my touch? I had made sure to give it a little fertilizer to help it through the dark days of winter. A mistake?

Then, last Tuesday, all of a sudden . . . tiny new leaves! A Brazilian rain tree is characterized by multiple, symmetrical leaves that fold up like books at night. These newbies appeared as if a little green library was sprouting. And each day, since, the new leaves have grown larger, opening up to sunlight. It seems my bonsai was communing with all the plants outside that have begun to sprout their own new leaves, in synchrony.

Every spring’s rebirth is a miracle—and a reminder of Nature’s intense imperative to replenish and grow, despite the odds. It’s such a great gift, and a welcomed assurance that even when our world is so chaotic, life rebounds.

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.

Delayed Reaction

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A week ago Friday, I checked an item off my health care to-do list when I got my pneumonia vaccination. For older adults, mine was Pfizer’s Prevnar 20, which stands for Pneumococcal 20-valent conjugate vaccine, in case you’re wondering. Basically, it covers a slew of bacterial strains, and as of current practice standards, I won’t need another pneumonia vax, ever.

It barely hurt, and I only had minor aches in my left shoulder for maybe 48 hours. No big deal.

Meanwhile, I’m still nursing nasty multiple ulcers in my left ring finger that have cost me a nail and considerable discomfort for at least six weeks, now, even as it slowly heals.

Thursday evening, after my shower, I noticed an odd, blotchy rash on my upper left arm. At first, I thought it could be hives, which I occasionally get from taking a shower. But the rash did not clear. In fact, it seemed to be spreading a bit.

Now, I have a history of cellulitis when I get infections in digital ulcers. Haven’t had an episode in quite a while, but this was my immediate concern. If you’ve ever dealt with this kind of superficial skin infection, then you know that it can get very dangerous if left unattended, with the potential, if it gets into the bloodstream, of causing sepsis.

Typically, when I’ve developed cellulitis, it spreads in a thick, red line from the ulcer up my forearm. I once had the experience of watching it spread at a rate of about an inch an hour. That landed me at the infusion clinic of my hospital, getting IV antibiotics.

So, even as this rash was in no way connected to my ulcer, I was still worried—indeed, worried enough to have trouble falling asleep, and rising to check if it was spreading several times. That is, until about 2:30 in the morning. I had traced the outline with an eyeliner pencil about an hour earlier and the rash hadn’t really moved. So I took a minocycline pill, which I always have on hand, and convinced myself to get some sleep. No way I was going to the ER to deal with it unless it seemed aggressive.

When I woke up Friday morning, there was no change in size, though the rash had filled in and was definitely warm. It suddenly occurred to me that this might be a reaction to the pneumonia vaccine. During Covid, I had twice developed a rash in my injected arm from the Moderna vax, though never from Pfizer. But this was a totally different shot. Sure enough, I found a few research articles online about delayed reactions to the Prevnar shots, though it’s quite rare (of course—I always get rare complications).

At 8:00 I called our geriatric practice and explained my concern, that I needed someone to determine if it was cellulitis or the vax reaction. I was prepared to spend half a day at Urgent Care, if necessary. So, here’s why I love our geriatric providers: they make house calls. And, it turns out, that even as our NP was not available, they could send a mobile urgent care team to our home. Which they did.

The team was great, and they confirmed my second hypothesis, that I was reacting to the shot, even as the rash was several inches below the injection site. The solution? Zyrtec. Which I started that day, and the rash is subsiding.

To say I’m grateful is an understatement. Fortunately, after four-plus decades of living with scleroderma, I know enough to know what to watch out for and how to get help. And I’m lucky to live where excellent help is available, right in my own home.

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: Louis Reed