Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

Rainbow Fingers

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On Sunday afternoon, I was sitting in my home office, making plans for the week, when I leaned back in my chair and glanced at the ceiling. There were dozens of rainbows, scattered everywhere. I looked down at my desk and saw more rainbows, dancing across my hands.

The source was the mid-afternoon December sun, fracturing through my crystal pen holder. I tried to take a picture of my left hand with my right, holding my phone. But this was an impossible feat, given current ulcers. So I grabbed my small tabletop tripod, rigged up the camera, and caught the image, above . . . though not without some difficulty, because the Earth was turning and the sun’s angle was shifting, even within seconds.

Change is the only constant. Beauty is fleeting. But if you pause to pay attention, glorious moments abound.

May your day be full of rainbows.

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.

What I’m Grateful For

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What a difference a year can make. Last Thanksgiving, our younger daughter couldn’t come home from Philly because of Covid risks. We had a small celebration with our eldest, who lives only an hour away. But the holiday was overshadowed by all the uncertainty and infections and deaths wrought by the pandemic.

This year, we’re looking forward to all four of us being together on Thursday and to seeing extended family over the weekend. We’re all vaccinated and boosted, so I’m much more relaxed about it than I was last November.

So, of all that I’m grateful for this holiday—our family, dear friends, a nice home in a peaceful neighborhood, a supportive community, the ability to work for myself and pursue my own writing, relative good health despite scleroderma, and more—the thing I am most grateful for this Thanksgiving is the Covid vaccine.

It is an absolute miracle. It is worth the temporary side effects. It prevents serious illness. It saves lives. It has protected me for many months, now. I fear how I would have fared during the Delta wave this summer without it. As cases again surge in Europe and here in the U.S., primarily among those who are not vaccinated as colder weather drives us indoors, I profoundly hope that more people will realize the incredible gift of this scientifically sound and safe vaccine, and get protection for themselves and others around them.

This is my 500th post on Living with Scleroderma. I could never have imagined, when I started this blog on January 3, 2012, that I would be writing about surviving a global pandemic nearly ten years later. Just typing that sentence is mind-boggling. We can never know what is coming next. My hope for you, Dear Reader, is that you make the most of each and every day, whatever it brings—and bring your best to it. That’s really all that any of us can ever hope to do.

Be well, and happy Thanksgiving to all who celebrate.

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: Eric Tompkins