Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

A Dozen Yellow Roses

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Monday marked our 40th wedding anniversary. A major milestone, indeed.

On Friday, Al brought home a dozen yellow roses to mark the occasion. On our first date 40 years ago, he brought me a dozen yellow tea roses, with the throw-away line that he was supporting his local florist. It was quite the surprising and touching gesture, especially on a blind date back in 1984. While that wasn’t the only reason I married him that December, it certainly helped.

The first year of our marriage was tumultuous. Al’s mother suffered the first of two debilitating strokes, Al became her front-line caregiver with my support, then he caught a serious case of mononucleosis and ended up in the hospital with a ruptured spleen and emergency surgery. He came home from the hospital the day before our first anniversary.

Meanwhile, back in January, a few weeks after we got back from our honeymoon on Cape Cod, I learned that I had some kind of autoimmune disease that was causing my fingers to swell and migrating arthritic pain. It was either rheumatoid arthritis, lupus, or scleroderma, which I’d never heard of.

We made it through that year and many other health crises in the decades, since. We raised two extraordinary daughters. We both worked hard at our careers, and we were both laid off and had to reinvent ourselves professionally, well into middle age. We shepherded our aging parents through their own infirmities and deaths. We continue to be active volunteers in our various communities. We cherish our travel adventures together.

No marriage is easy or perfect. We are very good at driving each other up the wall, across the ceiling, and down the other side. But Al has always been there for me, and I, for him. When we wed in 1984, I worried that the year was perhaps a bad omen. But here we still are, approaching what may actually be an Orwellian era, side by side. To say I’m grateful is a vast understatement.

Happy Anniversary, Al. I love you.

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.

That Time of Year

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It’s darker and colder, and winter is definitely on its way here in New England. Most of the leaves have fallen, and the city has swept the streets, so we no longer drive amidst canyons of leaf piles. Halloween witches and Thanksgiving turkeys have given way to Christmas lights and inflatable snowmen.

My fingers are not happy. As the temperature drops and the air gets drier, my skin becomes more fragile and ulcers appear. Right now, there are five: one on my left thumb, a couple on my right thumb, one on the tip of my right index finger, and one on the tip of my right ring finger. I am, as you’ve undoubtedly surmised, right-handed.

The thumb ulcers are nothing new. I have these perpetually, year-round. In fact, I can’t recall when I last was able to go without bandages on either thumb, mainly due to calcinosis lurking beneath the surface. The index finger ulcer is new, however, due to another calcium deposit. It is healing, slowly. The ring finger ulcer is more like a thin opening in the skin surface due to dryness. It is harder to heal, maybe because the skin is just very delicate.

So, I clean and bandage them twice a day and am very careful to keep them free of infections. It’s such an ingrained routine at this point that I don’t think much about it—except that I’m going through boxes of bandages at a faster rate than normal. For most of the summer and fall, I just had my thumbs to deal with.

There is some judgment involved, however. At what point do I leave off the bandage at night and allow my finger to heal on its own? It’s a real balancing act. If I forgo the night bandage too soon, the ulcer can get too dry and uncomfortable and wake me up. But if I rely on bandaging too long, then the ulcer may take even longer to heal and possibly get larger. I recently weaned an ulcer on my left index finger successfully. I’m working on the right ring finger this week.

I also need to be careful not to overuse my hands. I was reminded of this over the holiday weekend, when I was immersed in a sewing project that required some hand sewing—a frustratingly major challenge, given my resorbed fingertips and all the bandages. The result was an enlarged ulcer on my right thumb. Aargh. At least the project came out well.

Always an adjustment, heading into winter, no matter how many years I’ve lived with scleroderma. So it goes.

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.

Interior Monologue

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In less than a month, 25 days, to be exact, the winter solstice arrives here in the Northern Hemisphere. Which means that in just about two months, even as the sun will be visible about the same lenth of time as it is today, it will seem a little brighter because we’ll be gaining, instead of losing, a few seconds of daylight every day.

I always feel better when we finally reach the first day of winter. Even when it’s cold in January (though that is a relative concept these days) and I have to layer up to keep warm, even as our heating bill balloons, I feel a bit more optimistic, knowing that each day the sun will be shining a bit longer.

But, of course, this is all in my head.

So much of how we experience the world depends on the stories we tell ourselves. They can be empowering. For decades I have told myself that my scleroderma may limit me in certain ways that I need to respect, but it does not define who I am. That story has become my reality, and it’s enabled me to keep going.

But those self narratives, which are often not obvious when deeply entrenched, can also be the source of much pain. When we filter our lived experience through old, worn-out stories that were birthed in childhood, we get mired in doubts and fears and anxiety.

There are a lot of real reasons for doubts and fears and anxieties right now, but I am trying my best not to allow myself to get stuck in old, worn-out narratives that cramp my ability to see clearly how best to respond. It’s hard. Then I remember the natural cycle of the sun, admire November’s sharp shadows, and ground myself, once again. And if the prospect of lengthening days gives me a boost, even if it’s just in my head, I’ll take 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.

Coping Strategy

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Stress is contagious this Election Day. If you google “how to avoid election anxiety,” you’ll find a plethora of articles with titles like “Last-minute tips for coping with election stress and anxiety” or “Don’t let election anxiety get you down” or even “I’m a Therapist: Here’s How I’m Coping With Election Anxiety.”

Most of the tips are common sense:

  • Be mindful. Focus on the present moment.
  • Limit your intake of political news, polls, and social media.
  • Practice self-care. Pursue activities that give you joy.
  • Worry less. Do more to support your candidate in constructive ways that work for you.
  • Breathe.

I’m trying to do all these things. But I am also a political news junkie. For me, being as informed as possible via a range of trusted sources helps me to feel ready for whatever comes next. This is not for everyone. But it’s just the way I’m wired.

At the same time, I am also doing my best to focus on what’s in front of me. Editing for my clients is a great meditation. Working on Novel 2 is a dive into the world of my imagination, where time is suspended. Cleaning the house brings the satisfaction of putting things in order that are within my control. Taking walks clears my head. Watching anything that makes me laugh refreshes my heart. Reading great novels is an essential escape, as well as an immersion in another writer’s art. On Monday nights, I’m back to my acting class, which is wonderful.

Hugs help, too.

So, Dear Reader, sending you good karma and serenity for today and whatever comes next. If you haven’t yet, be sure to vote. See you on the other side.

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: Phil Hearing

Seeking Serenity

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We’re enjoying a short spate of glorious weather here in Central Massachusetts—lots of sunshine, azure skies, trees cloaked in flaming colors, comfortable days and crisp nights. A few days ago, I woke early and noticed that the moon had not yet set in the west. It glowed like a golden spotlight in the soft dawn, before the sun had risen. Just beautiful.

I’m trying to stay focused on these daily wonders and not go down the rabbit hole of my iPhone—all too tempting during this fraught run-up to the presidential election on November 5. I find it hard not to read everything I can about the potential outcome, all the twists and turns of the final weeks of campaigning, in a vain hope of divining the result ahead of time. It’s ridiculous, I know. Still, I scroll.

I am deeply, deeply worried about the outcome.

And so, I pray every day to find the calm in the eye of the storm. Maintaining serenity is the only way for me to think clearly. Not easy to do right now. But it’s also the only way to keep myself healthy. Meditation helps. So does taking walks in beautiful weather. And reminding myself of all the many, small miracles of existence that are so easy to take for granted.

So I pass this along to you, Dear Reader, in hopes that it will help you to find your own peace of mind in these complex and chaotic times. 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.