Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

A Break from the News

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This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. 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.

No Easy Fix

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So, here’s what I learned at my optometrist last week, with a thanks to all who expressed concern and good wishes:

My blurry vision is due to the fact that my eyes simply don’t make enough tears, the result of Sjögren’s Syndrome that I’ve had for decades. The relief I’ve gotten from using EvoTears, which form a moisture-trapping film over my eyes, is real, but not enough to keep my corneas truly healthy. So, especially in my right eye, which is more blurred, my vision is effectively analogous to looking through a dirty car windshield. This isn’t cataracts. It’s Sjögren’s. And there’s no point in updating my eyeglasses prescription until my corneas heal, because I can’t get an accurate assessment of any vision changes right now.

The other important fact I learned: The Restasis drops (standard treatment for dry eyes) that I use before the EvoTears are in a castor oil suspension. I need to wait a half-hour between the two eye drops, or I’m effectively trapping the castor oil in my eyes. This explains some of the irritation I’ve been experiencing. So, that’s an easy fix.

My optometrist gave me samples of a varenicline solution nasal spray, which I’ve used before, that stimulates tears, to see if this in combination with both eye drops will help. There are two issues with this approach: First, the spray helps, not not markedly, so far. Second, the nasal spray is outrageously expensive, available only by prescription, and not covered by my insurance.

So, I’m back to finding a way to tolerate the scleral lenses. He checked both lenses for me, and there are no scratches, so however I injured my eye a few months ago was some kind of fluke in the way I inserted the left one. I will need to keep the lenses in at least four hours a day, four to five days a week, to really heal my corneas and maintain them.

With six fingers in bandages right now, including that left ring finger still healing from a lost nail and an infection, that’s a challenge. So, I’ll just need to tough it out with the medications I have until I have better dexterity again. (As a side note, I’m typing with just my left pinky on the left hand right now, and somehow I’ve learned to type by touch and don’t have to look at the keyboard. So, that’s some progress!)

If there is any advantage from dealing with scleroderma and its sidekick diseases for more than 40 years, it’s this: I know my body does eventually heal from assaults like this. It just takes time and a lot of patience and vigilance. As the weather warms and my hands improve in their seasonal cycle, I should be able to master the lenses again and find the right balance. I’m grateful that I have access to excellent care and medications and the scleral lenses, even if they are difficult to deal with. The alternative is much, much worse.

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: Unsplash+

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

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.