Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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

Tornado Warning

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On Saturday afternoon around 4:15, I was lying on our living room couch and reading (not light reading, literally and figuratively, an 850+ page history of the Thirty Years War, but that’s another story), when my cell phone alarm went off. Really loud: a National Weather Service warning of potential for a tornado in our vicinity for the next half-hour. TAKE SHELTER! it advised, with more details in all caps.

Now, it was already dark and pouring outside, and we’d experienced a bright flash and loud crack of thunder a few minutes earlier. A severe storms was definitely passing through. But tornado watches are rare in New England, let alone a tornado warning. (Years ago when I lived in Illinois, I never got used to all the watches and warnings, and tornadoes were my dream metaphors for anxiety, but all that ended when I moved back east.) Being the more cautious of the two of us, I checked with Al, who was immersed in another activity, to be sure he’d heard the alert. He shrugged and went back to what he was doing.

I went downstairs with my heavy book to read. Since our daughters moved away, our basement family room is really now a junk room for storage, but there’s still a couch and decent lighting. It’s musty and needs a good clean-up, one of my perpetual to-do’s that I mean to get to this winter (there, I’ve put it in writing). Part of Al’s old vibraphone was lying on the couch, so I rolled up the wooden tone bars, moved them to the side, then picked up the strip of metal resonator tubes, to do the same, lost my balance and fell. Fortunately, I fell on a rug (mostly), but I banged my knee on part of the vibraphone. Which was not fun.

There’s a small, high window in the room, and it was quite dark outside. I could hear the rain, but no thunder or lightening cracks. So I read and checked the time and read and finally went upstairs at 4:45. Al was still immersed. I got an ice pack out of the freezer for my knee and went back to my history book on the couch. I felt kind of silly, but so be it.

Until I learned, not long after, that a tornado had actually briefly touched down in a suburb not far from us at exactly 4:15. Known as a “spin-up” or “land spout” by meteorologists, it was relatively small and lasted only a few minutes. But the damage was significant. In that brief visit, it uprooted and destroyed numerous large trees, including some oaks, which are among the sturdiest trees in this part of the country.

Which just goes to show that you never know what’s just around the corner, and that it’s worth being cautious when the NWS sends you an all caps warning about approaching storms. Especially in this time of severe weather, I’d rather sit in our musty family room for a half-hour than risk a tree falling on our house. If I get my act together, the next time this happens, our old family room will be a much more pleasant space to wait it out.

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: Greg Johnson

A Great Way to Start the Day

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Labor Day is past, the school year has begun, and red-orange sugar maple leaves are drifting to the ground. Here in our Fair City, it is preliminary Election Day, when we have the option to narrow the field of candidates running for at-large seats on our City Council. Fourteen citizens have thrown their hats into the ring for six seats.

I doubt if many people will take advantage of the opportunity to vote. This isn’t a flashy election, with the high stakes of the upcoming Mid-Terms next year. But it’s important. Our city is in the midst of a development boom, with affordable housing options evaporating for renters. Roads need repair and repaving. Our public schools need attention. Climate change is affecting every aspect of our lives. State funding is tight, and federal funding, even tighter now. Several times over the past year, City Council meetings have been disrupted by raucous protests over international headlines. Whom we choose to guide our city through these tumultuous times matters.

So, yesterday, on Labor Day, when I took the day off to start a new sewing project, I first drove down to City Hall and deposited my mail-in ballot to the drop-box outside the back entrance. I would have mailed it, but I missed the deadline and wanted to be sure it was received by close of business today.

It took me a while to complete the ballot. I didn’t know a lot about some of the new candidates, so I read through a series of profiles on our local newspaper’s website. Honestly, it was impressive. I find it very moving, when so much seems so dark these days, that idealistic citizens still want to serve our city. The role of City Councilor is not easy. The issues are complex, people are demanding and often not forgiving of human foibles, and the hours are long, for a nominal salary. Everyone on the Council has a full-time job elsewhere.

Perhaps it would have been just as simple to vote in-person at our local polling place today. But I like the convenience of the mail-in ballot, to be able to vote on my own schedule. There is nothing complex or mysterious or fraudulent, as some claim, about the process. We use paper ballots, whether in person or mail-in. The only difference is how the ballot is collected.

Throughout election season here, yards are dotted with candidate signs. Already I’ve seen candidates standing at major traffic intersections, holding up posters and waving to passing cars. Our mailbox has been stuffed with oversized postcards, touting candidate qualifications. We’ve answered the doorbell several times to people canvassing for their person. It’s a local tradition, this old-fashioned, down-to-earth effort to gain name-recognition in the build-up to November 4.

On my way downtown, traffic was light. Street meters on Labor Day were free. The whole round trip, including parking and walking to the drop-box and back to my car, took no more than 20 minutes. And it gave me a boost—an excellent way to start the day.

Whenever I vote, whether in a local run-off or a national election, I always feel better afterwards. In our democracy, voting is both a right and a privilege that I never want to squander. Every vote counts, especially at the local level. If you have the option to participate in your own community today, please do.

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