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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Sight

Winter’s Breath

Evelyn Herwitz · November 16, 2021 · 4 Comments

The city swept our streets last week, clearing mounds of brown leaves that neighbors had raked or blown into piles along the curb. Then the wind blew and rain fell and more leaves speckled lawns and sidewalks and pavement.

The trees always win, and that’s fine with me. Fallen leaves return nutrients to soil. And I like their sound and earthy smell as I scuffle through them. A child’s pleasure, it’s one of the rewards of forcing myself out the door to take my walk when it’s colder and the sun sets too early. My neighbors wear warm coats and wool hats as they walk their dogs. We all feel winter’s breath.

My fingers, too, are registering the approach of colder weather. The heat is on in our home, and my skin is dry. I’m up to four digital ulcers again, after a really long stretch of only one or two over the summer and well into fall. For now, no infections, although I’ve been on and off antibiotics for months, and my right thumb is not happy with my typing.

This morning I see my dentist, who had a new flipper made for my missing tooth. I’m hoping it will be easier and sturdier than Version One, which I’ll also have her check. Since I got my implant two weeks ago, the flipper no longer fits. I have yet to decide if this false tooth was worth the money, but I also have at least two more months to wait until I can get my crown and have all my teeth again—that is, assuming that the other lower front tooth, which is also resorbing, can stay put for a while longer.

So it goes. Managing my scleroderma is always a process of fine tuning every day. After 40 years, it’s just part of my routine—time consuming, but mostly white noise. I prefer to focus on living.

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: Johannes Plenio

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, resilience, tooth resorption

Falling Back

Evelyn Herwitz · November 9, 2021 · 4 Comments

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, resilience, travel, vacation

Public Service Announcement

Evelyn Herwitz · November 2, 2021 · Leave a Comment

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

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

Autumnal Perfection

Evelyn Herwitz · October 26, 2021 · 4 Comments

Sunday was one of those perfect, crisp fall days here in Massachusetts, just right for a good walk. So I took advantage of the weather to follow the trail around a drumlin nearby, one of the hidden gems of our city’s parks. Within a few minutes, you can immerse yourself in woodland. Even as car horns and swooshing traffic penetrate, the sounds of the city become more muffled the farther you climb the hill. My personal challenge is to make it all the way up the circular trail without stopping—good aerobic exercise. Trees along the way to the park, up the hill and down, provided inspiration. I hope you enjoy the view!

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

Sympatico

Evelyn Herwitz · October 19, 2021 · 1 Comment

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, 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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