Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

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

Interpolation

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My body is trying to tell me something. My shoulders are in knots. My fingers have developed more ulcers. I’m having trouble concentrating—or, rather, getting myself to the point of concentrating.

This morning, I woke from a dream that I couldn’t find a file in my computer, because the search function was screwed up. What was the file? Some essay I’d written that was titled “Megalomaniacs.” Which, as I write that word, includes an interesting interpolation of letters, which, if you’re following American politics, is pretty obvious.

Before I sat down at my computer to write this post on Monday afternoon, I took my walk around the neighborhood. This is always my immediate remedy for tension. The air was cool but pleasant. Mounds of brown leaves lined the streets, some with squashed pumpkins plopped on top. Most of the maples were bare, though a few pale golden leaves still clung to branches, their tint warmed by the honeyed glow of a sinking sun. An occasional car hummed by. Much of the way, I heard only the shuffle and crunch of leaves beneath my feet. No leaf blowers, thank goodness.

Most of my neighbors’ Halloween decorations had come down, but a few front steps still displayed harvest gourds. Other neighbors had been tidying their yards for winter. One who notably had choked a drive and detached garage with all kinds of stuff that only a hoarder could love had reduced their stash to just one small pile. Another had ripped ugly beige aluminum siding off much of their home to reveal moss green shingles. Even though they’re in need of replacement, the house already has a lot more character.

I passed other women, out for a stroll. We smiled and nodded to one another. Everything seemed normal, which was reassuring.

By the time I got back home, my shoulders had loosened a bit. I was breathing more deeply, always a plus. I’ve been carefully tending my new ulcers, and I was able to walk with my hands out of my pockets for part of my route, without discomfort from the cool air. My head was clearer.

Still, one encounter lingered—a brief chat with a neighbor who was sitting on her front lawn with her American flag, trying to figure out how to display it. “It just won’t hang right,” she said.

Indeed.

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.

Workout

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Memorial Day weekend was beautiful and warm here, a fitting beginning to the summer season. Finally, I’ve been able to go out without a jacket or coat, wearing just a sweater for an extra layer, if at all. We’ve had some rain, too, and as a result, everything is growing. Our new cherry tree has dozens of cherries, still green but getting plump. Our new blueberry bushes are filling out, too, and I’m looking forward to picking some berries in coming weeks.

The grass in our reseeded lawn, a nitrogen-restoring mix of fescue and clover, has grown quite tall, too. The clover takes a couple of seasons to establish itself (at which point the lawn becomes low-maintenance) but the grass has definitely taken hold. Meanwhile, Al has been away for the past week, visiting friends out west, returning Thursday morning. The yard is his turf, and he loves to putter outside. But at the rate the grass has been growing, by the time he comes home, I envisioned monkeys swinging from blade to blade. Or, more realistically, a happy neighborhood of deer ticks.

So, I decided that I needed to mow the lawn myself.

Now, I have never done this before. We have an old, gas-powered mulching mower, the kind with a pull starter-cord. It’s not terribly heavy, so I knew I could push it. But I wasn’t really sure how to operate it. So, I asked a mechanically-skilled friend who lives up the street to give me a lesson.

He inspected the oil and gasoline levels and adjusted the height, because I didn’t want to mow too close to the ground and chop off all the clover that has formed. It took him several tries to start the mower, because it had been sitting idle over the winter. Then I tried, but I didn’t have the grip or arm strength to yank it hard and fast enough. So he started it again for me. All I needed to do was grip the bar that controls on/off, push and mow.

Which I did. It was not terribly difficult, but it was not easy, either. The hardest part for my hands was gripping the bar to the mower handle, so it wouldn’t turn off before I was finished. Maneuvering it around our front yard took some pulling and shoving, especially because the grass was at least a foot tall. I worked up quite a sweat. Just as I was almost done, the mower stopped because it had run out of gas. Good timing.

Next step was to use the weed wacker to trim the borders of the lawn, but our extension cord only goes so far, so I had to leave that task only partially done. Also, the weed wacker vibrates intensely, not great for my hands.

After I put everything away, I proudly reviewed my handiwork. I could feel that I’d used muscles in my arms and legs that I haven’t challenged in a long time. It was actually good exercise, which I hadn’t expected. And the front lawn looks better, albeit far from pristine. Thanks to my good neighbor, I learned a new skill. But if I ever have to care for the lawn more often, I will definitely get rid of that old mower and buy a battery-powered version that is less polluting, more energy-efficient, and easier to operate.

That said, I accomplished my goal. And I proved to myself in the process that my hands are still capable of more than I have come to assume over my decades with scleroderma. Well worth the experiment.

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.