Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

Open Air Cathedral

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Beautiful, crisp fall weather this weekend beckoned for a walk. Our trees here in Central Massachusetts have carpeted lawns and streets with leaves, but there is still much beautiful foliage to enjoy. So I set out on Saturday afternoon to stroll through a historic cemetery in our fair city.

Why a cemetery, you ask? Because this one, Rural Cemetery, was first created in the 1830’s during the eponymous 19th century movement to create “open air cathedrals” for burying the dead, as opposed to cramped burial sites that dominated urban centers. Aside from the aesthetics, these park-like cemeteries limited the risk of ground-water contamination from decaying bodies. And so, our Rural Cemetery is an arboretum with some very old and magnificent trees.

The cemetery is also the resting place from some famous local citizens, whose names define many streets and landmarks here. Being a local history nerd, I find it fascinating to discover them, as well as to observe the art of gravestones from earlier times and how it reflects social attitudes and values about that most mysterious aspect of life—what comes next.

I hope you enjoy this stroll with me. . . .

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.

Making Progress

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As I wrote several weeks back, I’ve restarted taking Pilates. My purple pool noodle adaptation for padding the reformer’s foot-bar did not work, unfortunately (the hollow core was too narrow to fit over the bar), but my instructor found a great alternative—black foam pipe insulation. It’s about an inch thick and just the right amount of squishy protection for my sensitive feet.

So, with that issue solved, I’ve been enjoying my weekly class. The routine varies each week, and sometimes, even though this is a basic level, it is a bit of a struggle. But overall, I am feeling better, my posture is slowly improving, and I’m able to manage more spring tension on the reformer. I can walk up stairs a bit more easily, too. My lower back remains achy and stiff in the morning and when I sit too long at my computer, but it eases up with stretches and movement. My cardiologist has always told me that you can strengthen your heart and muscles at any age, and he’s right (of course).

In fact, I find myself looking forward to class, and even contemplating going more than once a week. (Although after last week’s workout, I really needed a full week’s break to let my body catch up.) The best part of the routine, aside from a sense of accomplishment, is the endorphin boost from exercise. It really does help my moods and relieve some of the mental and emotional stress that is all too present these days.

My other reward, since the studio is near a Whole Foods market, is to pick up some granola cereal and organic fruit, maybe some fresh flowers, too, after class. The first time I went to the intro session (when my shoulder developed a weird tremor), I could barely walk to my car, let alone across the large parking lot to the store. Now, even after an intense workout, I walk the distance easily.

So, 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: Katelyn Perry

Noodling Around

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Last Thursday I went to my new Pilates studio for the third time. I found an instructor who understands my need for adaptations without my even having to ask, I made it through the class without any setbacks, and I’m gaining strength little by little.

But there’s an issue I need to address. At this studio, you wear grip socks to help you hold onto the foot bar with your toes. The bar is only slightly padded, not great for me, because nature’s padding on the balls and heels of my feet has thinned out due to scleroderma. Years ago when I took Pilates at a different studio, they had optional foam padding to cover the foot bar. This studio doesn’t.

I’ve tried using metatarsal pads inside my socks, but they’re cumbersome and don’t really offer enough cushioning. What to do? I asked my instructor, and she said the foam padding you can buy online for a Pilates reformer is overpriced. As we brainstormed MacGyver alternatives, we came up with pool noodles—those long, colorful foam cylinders that kids use to learn to swim.

I did some online research, and sure enough, she was right about the pricing of the official foam pads for foot bars, ranging from about $35 to over $100. So, I checked out pool noodles. It turns out, there are two kinds—solid core and hollow core. I wanted the latter, because you need to be able to fit it around the bar. A little more research led me to a really cheap option: pool noodles at Dollar Tree for $1.59.

Given that it’s already August, pool noodles are in short supply, but at the second Dollar Tree store I visited, I found one of the last noodles in the display box. And, it’s purple.

I checked the dimensions of the official foam pads (23 inches long), marked the length, and set to work with an Exacto blade, a rotary cutter and point turner from my sewing box (the latter to help separate the foam), and a pair of very sharp shears. The operation—shortening the noodle and then slicing one side lengthwise—took all of 10 minutes.

The foam sheds a little, so I don’t know if that will be a nuisance. I also don’t know how well it will actually fit around the foot bar. But for $1.59 and 10 minutes of effort, it’s certainly worth a try.

And, it’s purple.

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.

Back to Pilates

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As I wrote a few weeks ago, I am in dire need of a solid exercise routine that will help me improve my posture and get stronger overall. Walking is my favorite exercise, weather permitting. I tried yoga a couple of years ago and ended up injuring my back. So that was out. Before the pandemic, for several years, I enjoyed Pilates, especially working out on a reformer, which is a bench with springs and ropes that you use to do various movements, using your body weight as a counter-force.

So, I decided to give Pilates a try once again, and about three weeks ago I went to a free intro course at a studio about 15 minutes from home. The studio was filled with reformers, so that was a good sign. Mat classes are okay, but not as interesting. As we went through the half-hour routine, many of the exercises were familiar and relatively easy for me to do.

However, about 20 minutes into the class, all of a sudden, my right shoulder began to shudder. Now, I know what an overworked muscle feels like when it trembles. But this was something altogether different, involuntary and weird, possibly triggered by arm circles, pulling on ropes that moved the carriage as we moved our arms. Whatever the reason, it really threw me for a loop. We moved on to leg exercises, and in about 10 minutes my shoulder calmed down. I spoke to the instructor after class, and she suggested reducing the spring tension and making smaller arm circles next time. She also asked if my docs had approved this exercise, to which I responded that they’ve been encouraging me to do more.

But I went home quite unsettled. Was my body really not up to this anymore? I stalled for about a week, then decided to contact my rheumatologist for his assessment. He was very encouraging and realistic. “You’re deconditioned,” he said. His advice: Take it slower to build back up, but there’s no reason not to go back.

So I did. Last Friday I took a full 50-minute, basic level class. I moved through the routine at my own pace, with rests as needed and smaller movements as necessary. Finished without any difficulty, and I haven’t really been too sore, either (compared to the intro class, which took a weekend to recover from). I’ve already scheduled a class for this week, and I intend to get a studio membership.

Best of all, I’m already noticing little improvements in my ability to stand straighter and get up more easily from a squat. All good signs that, as my cardiologist keeps telling me, it’s never too late to build yourself up again.

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: Ahmet Kurt

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