Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

Namaste

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Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the better.

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: Zoltan Tasi

Autumnal Perfection

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Sunday was one of those perfect, crisp fall days here in Massachusetts, just right for a good walk. So I took advantage of the weather to follow the trail around a drumlin nearby, one of the hidden gems of our city’s parks. Within a few minutes, you can immerse yourself in woodland. Even as car horns and swooshing traffic penetrate, the sounds of the city become more muffled the farther you climb the hill. My personal challenge is to make it all the way up the circular trail without stopping—good aerobic exercise. Trees along the way to the park, up the hill and down, provided inspiration. I 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.

Mud Puddles

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I read somewhere that March 2020 came in like a lion and stayed. So here we are, a very long and difficult year later, and the wind is gusting outside. I take a walk on a late Monday afternoon, before the sun sets, and the chill catches me by surprise. But I keep on walking. My flannel winter mask helps to warm the air I breathe.

When there’s no one else nearby, I lower my mask to inhale more freely. As soon as I see or hear someone approaching, I raise it again. I’ve gotten quite adept at moving to the opposite side of the street as another walker appears along my path. It’s all part of our learned choreography in Covid Time.

Most people I pass wear masks, too. And most everyone waves or says hello—more so than in the Before Time, when we took passersby for granted. Now, it feels all the more important to acknowledge each other when we can see only eyes.

Where snow is finally receding, mud puddles glisten in the late afternoon light. The ground looks like chocolate pudding. I inhale the earthy scent and notice a few matted blades of green where lawns have emerged from beneath their white blankets. Mourning doves coo as shadows grow long.

It’s after five o’clock when I return home, grateful for a warm kitchen, but glad that I stretched my legs and worked out the strain in my lower back from sitting too long at my computer. The sun still illuminates scudding clouds with a golden glow. I marvel that I can walk this late in daylight.

Spring is less than three weeks away, March 20. Three days later, I get my second Moderna vaccine. Then comes Passover. I mark time with ancient rituals, miraculous milestones, and the spinning of the Earth.

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: Jock Ocularic

Knee Deep

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It’s been a little over three months, now, since I fell and whacked my right knee. No visible signs of any injury or X-ray evidence of internal damage. Still, from time to time, it can still get achy.

I had mentioned this to my Boston rheumatologist back in early January, and he thought I may have bruised the inside of my kneecap. If the issue persisted another month, he suggested getting an MRI to determine if there might be a stress fracture. So, when I saw my local rheumatologist last week, I mentioned the residual soreness and asked him what he thought.

His advice: give it more time. He agreed with the bruised kneecap theory. But he also raised a really important point. If the MRI found a stress fracture, what would I do differently? Give that I have no trouble (thankfully) walking, standing, or sitting, there is no way I would want any knee surgery. The risks are significant (particularly regarding infection) and benefits in my case, questionable. I would just have a clearer idea of what was going on inside my knee, but—so what? Why undergo an expensive diagnostic, even if it were covered, or mostly covered, by my insurance? What’s the value-added to my ability to take care of my health?

Of the many lessons I’ve learned over 35-plus years of living with scleroderma, this was a really good reminder that not all diagnostics are worthwhile, especially when they might lead to more tests and complexity that doesn’t necessarily add up to better health.

So, I’ll just keep listening to my body and allowing my knee to heal. Going to the gym is helping or, at least, not slowing down the healing process. I’m up to a mile-and-a-quarter on the stationary bike, plus my mile walk on the indoor track. Climbing stairs is a bit easier, and I feel more energized, overall.

Obviously, if the pain were to worsen, I’d need to reevaluate next steps. But for now, it’s one less thing to worry about. And that’s the best health boost of all.

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: Ricardo Velarde

Cycling

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I hit my low energy point every day around 2:30 in the afternoon. I’ve been this way since graduate school. My brain gets fuzzy and my body wants to take a nap. Usually I can push through it.

Twelve hours later, it’s a different story. If I’m unfortunate enough to wake at 2:30 in the morning, chances are I won’t be able to sleep again for another couple of hours. My brain is wide awake, and there’s no use trying to pretend to sleep. Better to just get up and read for a bit, to short-circuit my mental hamster wheel.

Exercise interrupts both circadian cycles. And, now that it’s a new year, I’m back to the gym. I’ve been experimenting with different types of exercise for the past several years. Each has its advantages and drawbacks. Pilates is still the best overall exercise, but the classes I prefer are either first thing or mid-morning on a Wednesday, which is just not optimal timing, since I’m just not an early morning person, and I hate losing the rest of the morning to driving 20 minutes, going to class, and driving home.

Recently, I found another alternative—a Sunday morning barre class at an adult dance studio. But the pace, at present, is a bit too fast for me, and ever since I fell and whacked my knees at the end of October, I need to be careful of putting too much pressure on them. So, I’m hoping to get back to that, and, if the studio schedule shifts, a dance class, too, but I need to build myself up, first.

That is why, last week, after a three-year hiatus, I renewed my membership at a nearby college gym. Al is an alum, which gives me spouse privileges, and this gym has an indoor track. My favorite exercise is walking, but in winter, not so much. The elevated track, which encircles the gym, provides a great alternative. There are also stationary bikes. These, I’m not so crazy about, but I need to just do it, for aerobic exercise and to strengthen my legs.

Armed with my new ID card, I headed over to the gym on Monday afternoon around 2:30. To make the experience more enticing, I brought along a new, inexpensive set of over-the-ear wireless headphones, which I paired with one of my favorite travel podcasts. Off I went on my old routine of a half-mile steady walk around the track, a mile on the stationary bike, followed by another half-mile on the track.

It felt really good. When I got home, the bonus: my brain was clearer, despite the mid-afternoon witching hour.

If I can stick to this three times a week, I’ll be meeting a reasonable goal. More often, so much the better. And since I’m writing it here, I’m holding myself publicly accountable. Stay tuned for progress reports.

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: Tyler Lastovich