Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

All a Blur

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It’s a good thing I’m seeing my eye doctor this week for my very dry eyes. For several months, I’ve been struggling with blurred vision, and it is getting worse—to the point where it’s affecting my ability to read easily and see the computer screen clearly. This could be due to one or a combination of factors:

  • My eyeglasses need a new prescription. Definitely a part of the mix.
  • My Sjogrens is getting worse. Also possible.
  • The house is very dry, which is not helping. And no, we don’t use a humidifier, because we still have old fashioned radiators and baseboard heat and heat pumps, all of which are drying for my eyes. Plus, a room humidifier is a pain to keep clean and not that effective. But I need a warm house to manage my Raynauds, especially in recent weeks when it has been extremely cold here.
  • I’m having a reaction to my EvoTears eye drops, which up to this point have been nothing short of a miracle. They form a protective film on my eyes that retains moisture. However, blurred vision can be a side effect. Really hoping this is not the issue.
  • I have some kind of underlying allergy or infection in my eyes that is causing them to get goopy and blurry.

I am as meticulous with eye care as I am with my hands. I use gentle eye drops to clear them in the morning, then wash around my eyelids with warm water and a dot of baby shampoos to clear the tear ducts, then use Restasis for dry eyes, then the EvoTears. At night, I do another drop of Restasis and then use an overnight eye gel. This has worked well for a long time. But something has shifted. My vision is fine when I complete my morning routine but soon blurs, as if my eyes are making another filmy substance that interferes with my sight.

My eye doctor, who runs the dry eye clinic at a local college that teaches state-of-the-art optometry, has been a genius at diagnosing my symptoms and helping me find solutions, including the EvoTears, which I order from Europe, because they require an expensive prescription here but are sold OTC there.

My appointment is tomorrow. It can’t come a day too soon. Will report back when I have some answers.

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: Nigel Hoare

Cooped Up

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It’s 30 degrees F here today, but the real feel is about 19. It snowed over the weekend, just over four inches of fluffy white stuff, very pretty for a day and now shrinking into icy clumps. It’s too cold for me to take a walk, and the streets are patched with ice.

Ugh. I know it’s a lot colder elsewhere in the world, and there are far too many other urgent issues that demand concern. But right now I’m just feeling stuck inside, when I do my best thinking outside.

My ulcers are healing slowly, a bit better than last week, thanks to starting antibiotics when I realized I had at least one and possibly two infected fingers. But I still can’t do a lot of typing. Which also helps me think.

So I am just muddling along, trying to make the most of this cold day without getting too stuck in the muck I can’t control. I think we could all use a shovel to dig ourselves out, right about now.

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.

Improv

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I need to keep this short today, because my left ring finger is very sensitive, and it’s my main finger for typing with that hand. I’ve been losing the nail, and the skin beneath it is quite irritated. So I am typing with my usual three fingers on my right hand (thumb, ring and pinky) and using a rubber-tipped stylus to press keys with my left. Normally I use just my thumb and ring finger on the left.

This is slow going, sort of, because I can’t look at the screen as I type. But it’s better than nothing.

Over the years, I’ve learned to type seamlessly with only five fingers. I don’t think about it at all, until something like this happens. I hate voice-activated software, because it slows down my thought process and requires a lot of corrections—or, at least, it used to the last time I tried it, which was about seven years ago.

So, for now, I’ll keep up with this hunt-and-peck method until my finger heals up. Maybe I’ll even learn to type this way without looking. And who knows, maybe I’ll find an even better solution for the next, inevitable time ulcers get in the way of writing.

When things fall apart, creative opportunities abound.

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.

Inner Artist

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When I was growing up, my favorite thing to do in the whole world was drawing. Give me a pencil and a pad of paper, and I was in heaven. One year for my birthday, my parents gave me a drawing kit by Jon Gnagy, whose popular 1960’s Learn to Draw show was must-see TV for me. Along with an instructional book that taught you to analyze objects in terms of spheres, cones, and pyramids, the box contained drawing pencils and paper, a soft eraser, a blending stick, and charcoal. I spent hours in my room, sitting on the floor, working through all the exercises.

As I got older, my favorite drawing medium became pen and ink. But sepia conté crayons, colored pencils, and pastels were also high on the list. Every summer, I would bring a drawing pad and implements on our family vacations to Cape Cod and sketch at the beach. I took summer art classes as a preteen and a drawing class in college, watercolor and drawing classes in my twenties, and since then, occasional classes at our wonderful art museum. For our young daughters, I would draw illustrations and, in a reprise of childhood, would bring my pencils and paper to the beach for our Block Island vacations.

In recent years, however, I have hardly drawn at all. Some of it has to do with damage to my hands from scleroderma. In fact, that’s probably the main reason. Not that I can’t still draw, but when I have a lot of ulcers, it’s just harder to hold a pencil for any length of time. Or so I tell myself. I use triangular rubber grips on my drawing pencils to ease the pressure, and that definitely helps. But something has been holding me back—most likely, just reluctance to push my hands too far.

Even so, I’ve had a New Year’s resolution for more than a year to get back to drawing, which I managed to do only twice in 2024. Each time, once sketching my African violet, and once on Block Island last June sketching Al at the beach, gave me great pleasure. But I still kept putting it off.

On Sunday, I decided to try again—this despite having five bandaged fingers right now. I needed to do something joyful and rejuvenating after a week of such dark news. I pulled out my colored pencils and my mostly empty drawing notebook, set up a vase of roses on a low stool, so I could look down into the blossoms, and drew. It was wonderful. I sank right back into that peaceful, meditative space of observation and interpretation. No matter the ulcers, I could still control the pencils as well as ever. When I finished, I felt relaxed and happy and in tune with my inner, non-verbal artist.

She’s been clamoring for attention. She deserves more.

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.

Inflection Point

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Monday dawned bright and bitter, with a sparkling five inches of snow weighing down evergreen boughs. As I write, I’m wrapped in my warmest long sweater coat, grateful to be inside, even as I enjoy the view. My appetite is back after last week’s close encounter with a norovirus, for which I am also grateful.

I am writing this on Monday afternoon, glimpsing a flash of a red cardinal in the yews beyond my window, because I have chosen not to watch the inauguration of our 47th president. I have never missed a presidential inauguration until today. I am refusing to watch, because I need to set boundaries for my emotional, physical, and spiritual well-being. In the weeks leading up to today, I have struggled to stay calm.

Our nation is at an inflection point. Democracy is at serious risk. Political power is for sale, and fear is the powerful’s cudgel.

How to stay sane and healthy—and be a responsible citizen in our country’s time of need? I have a few priorities, at the outset:

Stay informed by reliable, independent, accurate news sources. My new favorite is The Contrarian, which was launched last week by former Washington Post columnist Jennifer Rubin and ethics attorney Norm Eisen. Their commentary on the inauguration was priceless—sharp, insightful, and funny, which is a great salve.

Limit consumption of the above so that it doesn’t consume all of my attention. Not yet sure what the right balance is. This is a work in process. My blood pressure will be my guide.

Call my Senators and Congressional Representative to express my concerns. Here in Massachusetts, I’m fortunate to be represented by ethical politicians with a lot of experience, who share my values. But I’m also trying to encourage friends and family elsewhere to do the same. You can find your Congresspeople here. Our voices matter, especially collectively.

Invest my energy locally, to improve my community. For several years I have been involved in efforts to preserve and grow our city’s urban forest and strengthen our ability to withstand climate change. This volunteer work is very rewarding and has literally been saving my sanity. And the trees we plant will outlast whatever happens in Washington.

Write. I continue to work on Novel 2 and seek a home for Novel 1. My art is my way to understand my world. It is an outlet for angst and a refuge. It is both the most difficult work and the most essential.

This journey is not the one I expected to be traveling at this point in my 70 years on the planet. But here we are. The only thing that is certain is the present moment. And the only thing we can control is how we choose to respond.

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.