Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Falling Back

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On Sunday we made the big shift, setting clocks back an hour to Eastern Standard Time and befuddling our brains in the process. Wait, the sun is nearing the horizon and it’s only four o’clock? Every year we go through this rigamarole, and every year I feel the darkness settle.

Sunlight in November is precious. I used to hate this month when we turn back the clocks, bringing nighttime all the more near. But in recent years I’ve come to appreciate it, despite too-early sunsets and crumbly brown leaves. The light is stark. It casts bare branches silver by day and coats them gold by late afternoon.

Nowhere is November light more beautiful than on Cape Cod, where Al and I spent the past weekend. We walked beaches at sunset, nature preserves at Noon, rediscovered a beloved bookstore frozen in time since the sixties, ate many good meals, and just enjoyed a much needed break. Here are some of my favorite photos from our trip. Enjoy!

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.

Public Service Announcement

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I’ve been dipping my toes into local politics lately. A friend teased me the other day that I’ll end up running for mayor.

No way.

But it’s been quite the education. Since July, I’ve been coordinating a group of concerned citizens who care a lot about our city’s trees to push our City Council to create an Urban Forestry Tree Commission. And we’ve succeeded. The Council unanimously approved the concept in August, the City Manager’s team wrote an ordinance, and it was unanimously approved by the Council a couple of weeks ago. The Commission, which we hope will start up in January, will advise city officials about best practices for preserving and growing our tree canopy and advocate for tree stewardship. Essential as the climate crisis intensifies.

It’s been exciting to see progress come from citizen action. I feel like I’m part of something really positive instead of just wringing my hands about global warming. And I’ve gotten to know our district’s City Councilor, who brought our cause to the Council. Now he’s in a very tight race for re-election, and the politics have gotten pretty nasty, with a lot of disinformation coming from his opponent’s campaign.

So, that’s how I ended up Monday afternoon participating in a “standout” for our man, which is a local tradition where supporters hold candidate’s signs at busy traffic intersections and wave at passersby. I’d never seen this before I moved to our fair city four decades ago. I used to think it odd. But I get it. It’s all about name recognition and show of support. I waved and held a sign and chatted with our candidate and some of the other supporters until my hands got too cold.

It’s easy to ignore local elections. But all elections have consequences. And local government is where you have a chance to have the most impact, especially when turnout is low in off years.

Today is Election Day. If there are elections in your community, please take the time to vote.

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: Elements5 Digital

Sympatico

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It definitely feels like fall this week in Massachusetts. A few days ago, it felt like summer. But now the trees are really starting to change colors as the days grow shorter and temperatures hover in the 50s.

I find myself feeling more tired, which always surprises me when cooler temperatures finally settle in. It’s like my body senses the approach of winter and wants to prepare for hybernation. My hands start turning blue more often, and I just want a nap.

My bonsai is responding to the seasonal shift, as well. When I set it out on Sunday to catch the sun, its leaves soon drooped in response to wind and chillier air. A Brazilian Rain Tree, it prefers tropical weather and humidity, but can still flourish in the Northeast, just not when temps drop below 45°F.  I’ve been bringing it inside at night, but now it seems to be imploring me to keep it in the kitchen when temps drops below about 60°F.

We are definitely sympatico.

I brought its little table inside, too, so it can enjoy the midday sunshine through the south-facing sliding glass door off our back deck. Now I just need to get a tray and fill it with gravel and a little water, to place underneath its pot. Evaporating water will help to keep it humidified when we turn on the heat.

I know it may lose all its beautiful foliage at some point this fall. So far, however, it remains emerald green and continues to form new leaves and stalks. Though I’ve cut back on watering it daily, it keeps growing.

Even as my fingers turn blue, I guess I may have a green thumb, after 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.

Ulcer Fiends

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It has been pouring, a chilly rain, all day Monday. Fall is definitely here. What amazes me, though, is that I only have one digital ulcer—on my left thumb—that requires a bandage. At this time of year, that’s a minor miracle.

As I’ve written elsewhere, spring is always my worst season for ulcers on my fingers. This summer, however, was a challenge, as well. In the past six months, I have been on antibiotics at least three times, for about a month each time. That’s how long it takes the infection to clear. May was the most challenging month, with multiple fingers competing for attention.

Fortunately, I caught the infections before they became intolerable. One set required two different antibiotics to clear up completely. Perhaps it’s because I just finished the last round of antibiotics only a few weeks ago that my fingers are in better shape right now. Or maybe because I’ve been using medical grade honey to treat them, which both has natural antibiotic properties and also gently debrides dead skin. I was getting concerned about my left thumb, because it appeared that bits of calcium were buried in the ulcer and popping out, impeding its ability to heal. That situation has finally resolved, for now.

Writing about my sole bandaged thumb certainly risks tempting the Ulcer Fiends. They will be back to stage another sneak attack, as is their way. But I hope they’ll give me a break for a few months, at least. Maybe give me time off for meticulous hand care? A pass for layering up with sweaters and hand warmers? A chance to enjoy a little freedom from bandage adhesive? I promise to always use hand sanitizer when I’m out and about and a good skin moisturizer every night.

Are you listening, Ulcer Fiends? Probably not. Until we meet 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: K. Mitch Hodge

Hardening Off

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On Monday morning, steam clunked through our radiators. The sugar maples on our street are beginning to tinge yellow and orange and shed a few leaves. The days grow shorter. Fall is officially here.

My bonsai has been flourishing all summer, but as temperatures begin to drop, I need to learn how to prepare it for fall and winter. I’ve found some instructions online. Not surprisingly, you begin to limit food and water, still ensuring that it never dries out, but restricting intake. Like all trees, it has to harden off for the colder, darker months of the year here in the Northern Hemisphere. Time to reduce stress from cooling temps and allow it to acclimate.

I feel the approaching cold, too. Still wearing sandals for as long as I can, but starting to acclimate my feet to enclosed shoes again. I’m going through my sweaters, adding more layers as needed. I do not look forward to winter coats and boots and gloves and scarves and hats, but I will make the most of it. I ordered some beautiful Italian wool to sew, and I’m contemplating projects.

Soon the brilliant New England fall foliage will entice, as trees shut down photosynthesis, shed their leaves, and transfer sap to their roots, saving energy for the cold months to come. That, at least, is a gorgeous way to transition to weather that triggers my Raynauds.

And I will adjust, too, as I always do. Carpe diem.

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.