Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Incantation

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A couple of weekends ago, before the Nor’easter that dumped 15 inches of snow on our fair city this past Saturday, I cleaned up my office. It was approaching the point of no return, with too much stuff on my desk in piles, and not enough room in my second bookcase to store everything (the first one being full).

Rearranging some stuff made more room in the bookcase, which enabled me to clear more of my desk, so I now have a nice, uncluttered (relatively speaking) place to work. I’ve also been rediscovering a few gems I had forgotten or just couldn’t see because they were under or behind other stuff.

Among those items is a little wand. It’s made of hard, clear plastic and is filled with some kind of liquid and multicolored sequins shaped like stars and crescent moons. When you tip it one way, then another, the sequins spin and tumble back and forth. It’s quite relaxing, mesmerizing, to play with. Almost magical.

It would be nice to own a real magic wand, one that I could wave and make all the Sturm und Drang of the pandemic, climate change, politics, scleroderma, and everything else stressful and scary to just go away.

It would be nice.

But the only real magic comes from effort and persistence and a determination not to let the harshness of this world in the 21st century squeeze out the beauty and joy and goodness that is everywhere, as well.

Hiding in another spot on my desk was a sticky note with this quote that’s attributed to Johann Wolfgang von Goethe:

“Whatever you think you can do or believe you can do, begin it. Action has magic, grace, and power in it.”

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.

Cold Snap

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Seems like we’re stuck in an Arctic weather pattern here in New England. After a couple of mild winters, this January feels like the real thing. Which is not to say that global warming isn’t happening. Global weather patterns are shifting in unpredictable ways, and this winter is just part of the mix.

I find it challenging, to say the least. Even at home, with the heat on, I am in multiple layers. My ultra-warm alpaca sweater jacket that I made in December turns out to be one of the best things I’ve ever sewn. Good timing.

With single-digit windchill, I’ve had to keep indoors more. But on Monday afternoon, when the temperature hit 30°F, I pushed myself out the door in all my winter gear and took my 25 minute walk around the neighborhood. Even without any wind to speak of, my eyes were cold. Nonetheless, I was glad I did it. Walking really clears my head. I sleep better. The air smelled clean and crisp. A few birds were singing (aren’t they cold, too?). And the ice-crusted snow glowed in late afternoon sunlight.

Best of all, in late January, I realized that the sun was not quite as low on the horizon at 3 o’clock. Indeed, it’s still a bit light now at 5 o’clock. Whatever weather and climate disruptions we must face and strive to mitigate, at least there is this one constant. Our precious planet spins on its annual trip around our sun, and the days grow longer, once 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.

Waste Not

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I use a lot of bandages. Right now, I need six bandages during the day and five at night to protect my digital ulcers. So that’s 11 every day, 77 a week. My favorite brand is Coverlet, because they are made with very soft fabric with non-irritating adhesive. They come 100 to a box. I buy a dozen boxes at a time, and in the winter, will go through a box every 10 days. When I’m down to two boxes, I order another dozen, to be sure I’ll get them in time, because they’re not available in stores.

So far, knock on wood, there have been no supply side issues with getting them, but I’ve really tried to keep on top of it. No other brand comes close.

All those bandages generate a lot of waste paper—the paper protective cover and the paper backing to the bandage adhesive. It’s bothered me for many years. But now, I’ve found a solution.

Recently, we enrolled in a composting program that’s available in our fair city. Not only do they accept food scraps, but also certain kinds of paper. Apparently, the paper actually helps in the composting process. And the kind of paper used to package my bandages is included in their “ok” list.

So, now, once a day, I empty all my bandage paper scraps into our kitchen compost bin, and when full, the biodegradable bag goes into the larger biodegradable liner in our outdoor compost bin, which is collected on Friday mornings by our compost service.

Not only are my bandages protecting my fingers, but their waste paper is helping to keep the planet a little healthier, too. A win-win.

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: Toni Reed

Little Victories

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No doubt. It’s winter here in New England. Over the weekend, we got about a half-foot of snow, plus some icy rain. Our bird feeder’s squirrel-blocker, a plastic hood that hangs above the feeder, looked like a snow hat. And it’s cold, hovering in the ’20s F. Today we plunge into single digits.

Despite the bitter weather, which I find rather intimidating, I forced myself out the door twice in the past few days. My first jaunt around the neighborhood, on Saturday afternoon, was my first venture out of the house since before Christmas, because of that darn respiratory, non-Covid virus that dogged me for a good 10 days. It felt so good to breathe fresh air. And I finally have my voice back.

Monday afternoon, I ventured out again, along my half-hour route. I was bundled up in my warmest, full-length down coat, lined boots, scarf, wool cap, aviator hat over that, and mittens. I looked ridiculous. But I really don’t care. It’s a priority to get out and walk whenever I am able, to clear my brain, stretch my legs and back, move my joints, and exercise my heart. I definitely feel better when I get home.

I also feel just a little bit invincible. (Yes, I know, that’s an oxymoron.) If I can get out and walk a half-hour in freezing temps, then I’ve overcome my Raynaud’s and scleroderma for another day. And that, Dear Reader, simply feels great.

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.

Virtual Advantage

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As we brace ourselves against the Omicron variant that’s surging across the U.S. and around the globe, all-too-familiar restrictions are going back in place. It’s scary and frustrating and annoying, yes. But if infection rates in other countries hold true here, there’s at least some reason to hope that this latest wave will be short-lived and not as dangerous. Especially if you’re fully vaccinated, which includes a booster.

In the meantime, I’m taking some inspiration from a virtual meeting I attended last week, and I hope you will, too. What’s interesting to me is that the meeting would probably have been less inspiring if it had been held in person, but Covid restrictions required the online format.

Here’s the background: Over the summer, I got involved in some local civic action, coordinating a group of concerned community members to push our fair city to create a commission that would protect our urban forest. Too many street trees have been targeted for removal to accommodate development and infrastructure improvements, when other solutions are available to achieve those goals while saving mature trees. This is an issue I’ve cared about for decades, but had not engaged with for some time. Our urgent climate crisis impelled me to get involved again.

We succeeded in our effort and also helped to re-elect a city counselor who was a key player in the mix. As a result of all this, I decided to apply for a volunteer seat on a related advisory committee that will oversee the city’s recently adopted plan to mitigate climate change. I passed the first hurdle when my letter and resume were approved for further consideration.

The next step was an interview with a citizen’s advisory board that clears applicants for all city commissions and committees. In the Before Times, this would have been conducted in-person, in some kind of public hearing space where each of about 20 applicants for various volunteer roles would have been interviewed one at a time, semi-privately. But due to Covid, we were all online, in our little Brady-Bunch-boxes, along with the board members, interviewing in front of everyone.

I was #15 on the agenda and a bit nervous.

As the meeting proceeded, however, it soon became apparent that I was in the company of some really remarkable souls. Each one of us wanted to help the city do better. Each wanted to contribute their expertise and passion to a particular volunteer responsibility.

Three of the candidates had immigrated here years ago—one from Ghana, one from Vietnam, and one from Libya—and all wanted to give back to the city (zoning board, elder affairs commission, board of health) that had taken them in and enabled them to flourish. Three others applying for the same committee as I was had outstanding professional credentials related to environmental engineering and energy conservation. I chose to emphasize my communications skills along with my knowledge of the city’s urban forest.

One young man who was an amateur boxer and had grown up in local youth clubs wanted to help others gain the support and affirmations that had meant so much to him by serving on a commission devoted to inclusion and diversity. Another was an attorney who had recently moved to the city and wanted to help with human rights issues that included, most recently, the use of police body cameras. And that’s just about half the people at the virtual meeting.

If Covid hadn’t forced us to attend online, I never would have heard all those wonderful stories. It made me feel really great to know that these people exist. Best antidote ever for all the dark news these days.

And, yes, I made the cut. Final step is an interview with the City Manager’s staff. Even if I don’t get picked, I know that some caring and talented people will be selected. That’s all that really matters.

Here’s hoping 2022 brings more light to us all. Best wishes for a healthy, uplifting New Year.

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: Harrison Steen