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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

A Great Way to Start the Day

Evelyn Herwitz · September 2, 2025 · 2 Comments

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, mindfulness, resilience

Back to Pilates

Evelyn Herwitz · July 22, 2025 · Leave a Comment

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

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, exercise, managing chronic disease, resilience

Stand Up Act

Evelyn Herwitz · July 1, 2025 · Leave a Comment

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

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Filed Under: Body, Mind, Sight Tagged With: body image, body-mind balance, exercise, hands, managing chronic disease, resilience

Serenity Break

Evelyn Herwitz · June 17, 2025 · Leave a Comment

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.

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Filed Under: Body, Mind, Sight, Smell Tagged With: body-mind balance, mindfulness, resilience

Adventures with Antibiotics

Evelyn Herwitz · April 1, 2025 · Leave a Comment

Now that my blood pressure seems to be, thankfully, calming down, the next frontier is healing the infection in my left ring finger. As I’ve written recently, this has been going on for a couple of months, now. Two multi-week courses of Minocyline perhaps helped, but not enough to really clear the infection.

So, last Monday, I met with an infectious disease specialist to get some help. Finding a broad spectrum antibiotic for me is complicated, because I am allergic to a variety of treatments. This physician is a colleague of the ID doc I had switched to a couple of years ago, after my longtime specialist retired. The new doc was away, so I was scheduled to meet her. A good thing, as it turned out, because she is very empathetic and understood immediately what the problem was. She put me on a ten-day course of levoquin, which I had successfully used a couple of years ago for a severe digital ulcer infection.

Levoquin has a number of potential side effects. The most serious involve tendon inflammation and risk of tearing or rupture, especially the Achilles tendon. So far, thank goodness, that hasn’t happened. But, the evening I took the first dose, I discovered another side effect—insomnia. I simply could not fall asleep until after 4:30 a.m. While tossing and turning and looking up the drug’s impact on sleep (sure enough, I was not losing my mind), I also learned that you should not take ibuprofen with levoquin, because it can increase risk of seizures. I take ibuprofen daily to manage join pain.

So, the next morning, I wrote to my new ID specialist, told her what had happened, and asked about ibuprofen. While she was surprised about my sleep disruption (I always have rare side effects), she double checked and concurred that I should stop the ibuprofen while on this antibiotic and switch to acetaminophen to manage pain. Now, acetaminophen is fine for pain relief, but it does not treat inflammations.

This became readily apparent that night. I began to experience nerve pain in my infected ring finger and the middle finger next to it, which apparently had picked up some of the infection. Again, I struggled to sleep, and I could barely concentrate the next day. Finally, I gave up, contacted my geriatrics team which serves as my PCP, and my NP gave me a scrip for gabapentin to control the nerve pain.

I have not had to take this drug since 2017, when my hands fell apart and I needed hand surgery. It is strong. It makes me loopy and groggy. It exacerbates my blurred vision from Sjogrens. The side effects ease as my body adjusts, but it packs a punch. It also, thank goodness, brought my nerve pain under control. Would this have been unnecessary had I taken an antibiotic that wasn’t contraindicated with ibuprofen? I have no idea.

At least the gabapentin is helping me sleep. And keeping the nerve pain at bay. The levoquin appears to be helping, but I’ll be glad to complete this course and get back on ibuprofen. I have an appointment next week at the Wound Clinic at our hospital to find out how to heal the skin and grow back the nail on my finger—and, I hope, some new ways to prevent this from happening again.

Managing scleroderma is complicated. I’ve learned enough over the years that when I meet a new medical professional, I’m often asked if I am one myself. I’m grateful that I have access to excellent care and that, at least for now, my Medicare still covers it all (another topic for another time). I also am grateful that I can adv0cate for myself effectively. But it is exhausting. Doctors are overworked and miss stuff. You have to pay attention and do your research and speak up. There is no other option.

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: Stefano Pollio

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, finger ulcers, infections, insomnia, managing chronic disease, resilience, stress

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

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  • Making Waves
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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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