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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Mind

Olympic Feats

Evelyn Herwitz · July 30, 2024 · Leave a Comment

For the past few evenings, I’ve been watching the Paris Olympics the old fashioned way, on NBC. I refuse to purchase yet another streaming service, even as Peacock has the comprehensive schedule and streams real time and recorded events. Though I must admit, it’s tempting to gain access to real competitions instead of a curated summary that excessively favors coverage of US athletes and is interrupted every few minutes with commercials awash in treacle.

On the plus side, all those commercials give me ample opportunities to do my bedtime routine without missing anything.

Mostly, however, I’m in awe of what these amazing athletes can accomplish. And a bit envious of their perfect, young, strong bodies. What would it feel like to swim like Torre Huske and Gretchen Walsh, who clinched gold and silver on Sunday in the Women’s 100m Butterfly, finishing within split seconds of each other? Or to twirl in the air like the gravity-defying gymnast Simone Biles?

I was never much of an athlete. Correction: I was never an athlete, nor did I aspire to be one. I just wasn’t that coordinated or strong as a kid, and I found sports competitions stressful. Only once can I recall the thrill of winning a swimming race in the lake by our house. We were at some kind of summer neighborhood party, and I beat out all the other preteens in a race to the raft and back. I won a little red and purple paper flower award, and it felt great. But not great enough to get serious about swimming or any other form of athletic competition.

Sometimes I wonder, had I been more rigorous about exercising in my youth, would I have been able to avoid scleroderma. Not that there is any known connection between exercise and this strange disease. And athleticism is no guarantee of good health, though it certainly helps. I was very moved by the backstory of US gymnast Suni Lee, who has overcome debilitating kidney disease to compete in Paris. Even more than whatever medals she is likely to win for Team USA (she was all-around women’s gymnastics champion at the 2021 Tokyo Olympics), I think she already deserves a gold medal for her incredible grit. Same goes for Simone Biles, who confronted her deepest fears and insecurities about competing after she withdrew from the Tokyo Olympics four years ago, to once again dazzle the world with her truly extraordinary strength, coordination, and grace.

And that’s really the point. I have never been athletic—by choice and by genetics—and scleroderma certainly has put real limits on what my body can accomplish. But within those limits, there is still a lot that I can accomplish. It’s all about not giving up in the face of a daunting disease. It’s all about where I choose to place my focus—mental, emotional, spiritual, and, yes, even physical. Olympic feats are not limited to the Olympics.

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 Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Room to Grow

Evelyn Herwitz · July 23, 2024 · 2 Comments

Three years ago, I planted my first bonsai, a Brazilian rain tree. Miraculously, it has survived (unlike my second bonsai, a juniper that I neglected to water often enough) and thrived. Thrived so much, in fact, that it needed a new, larger pot.

On Sunday I attended a re-potting class for tropical bonsai. Sure enough, when I extracted my little tree from its terracotta pot, its roots were dense and intertwined. The first step in re-potting a bonsai is to carefully tease out the remaining soil between the roots as well as loosen the roots themselves, which look like a tangle of pale hair. This I was able to do and, with help of my instructor, settle my bonsai in its new home, an oval, aqua-glazed pot.

By the time I was finished—having tapped in all of the potting mix with a chopstick to eliminate any air bubbles, re-wired the bonsai to secure it to the pot (my instructor did that part), wired some more branches to train them in an aesthetically pleasing shape, pruned excess leaves, and given the tree a thorough soaking—my bonsai was not looking very happy. Brazilian rain trees close up their leaves when sunlight diminishes or they are stressed.

But back home, on its bed of pebbles that trap moisture, spritzed with water, and out of the sun for a few days, it perked right up. By Monday morning, it was the beautiful bonsai you see in the photo, above.

It was sweltering at the bonsai workshop, and I was not feeling great, either, coming down with some kind of respiratory something (so far, still COVID negative, thank goodness), so I lay down for a nap just before 2:00 p.m.. Then my phone started beeping with the news of President Biden’s momentous decision to drop out of the race and endorse Kamala Harris as the Democratic nominee for president.

What a tumultuous roller coaster of a week in our nation. I am deeply grateful for our President’s leadership and putting country first. And grateful that we have room to grow beyond this dark period to build a better future.

How my bonsai began in June 2021

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, Hearing, Mind, Sight, Touch Tagged With: resilience

Crossroads

Evelyn Herwitz · July 16, 2024 · 2 Comments

I find it difficult to write about anything, given the weekend’s terrible news here in the U.S. So I share with you an excerpt from President Biden’s wise words Sunday night. Whatever your politics, we all need to take this to heart. Period.

Tonight, I want to speak to what we do know: A former president was shot. An American citizen killed while simply exercising his freedom to support the candidate of his choosing.

We cannot—we must not go down this road in America. We’ve traveled it before throughout our history. Violence has never been the answer, whether it’s with members of Congress in both parties being targeted in the shot, or a violent mob attacking the Capitol on January 6th, or a brutal attack on the spouse of former Speaker of the House Nancy Pelosi, or information and intimidation on election officials, or the kidnapping plot against a sitting governor, or an attempted assassination on Donald Trump.

There is no place in America for this kind of violence or for any violence ever. Period. No exceptions. We can’t allow this violence to be normalized. . . .

Disagreement is inevitable in American democracy. It’s part of human nature. But politics must never be a literal battlefield and, God forbid, a killing field.

I believe politics ought to be an arena for peaceful debate, to pursue justice, to make decisions guided by the Declaration of Independence and our Constitution. We stand for an America not of extremism and fury but of decency and grace.

All of us now face a time of testing as the election approaches. And the higher the stakes, the more fervent the passions become. This places an added burden on each of us to ensure that no matter how strong our convictions, we must never descend into violence.

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: Kristaps Ungers

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

Sew It Goes

Evelyn Herwitz · July 9, 2024 · Leave a Comment

I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, mindfulness, resilience, sewing, stress

Too Darn Hot

Evelyn Herwitz · June 25, 2024 · Leave a Comment

This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. Be well.

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: Library of Congress

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, heat wave, managing chronic disease, Raynaud's, resilience

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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…

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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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