Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

The Eyes Have It

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Scleroderma is complex enough on its own, but Sjogren’s Syndrome, which can accompany scleroderma, adds yet another layer of complexity. Sjogren’s is also an autoimmune disease, which typically presents with dry eyes and dry mouth but can cause other internal organ issues. I’ve lived with this for decades alongside scleroderma, and I take medication that manages the dry mouth component. But the dry eyes piece is a whole other challenge.

So I was really thrilled to discover a new (here in the U.S., at least) eye-drop that my dry eye specialist recommended. EvoTears® (Augentropfen) is unlike any eye-drop I’ve used previously. You can barely feel the drops when you use them (which makes it a bit tricky to know if you’ve actually succeeded in getting them in your eyes). As my optometrist explained, they strengthen the oil layer of natural tear film to keep the watery part of tears from evaporating. Given that my eyes barely make tears anymore, I was hopeful.

And the drops work. Brilliantly. The first day I tried them, I actually forgot about my eyes for the whole day, a first in a very long time as my eyes have gotten drier. (As in, even if I need to cry, I rarely can—especially uncomfortable when slicing onions.) I was able to read for several hours without discomfort, to work at my computer without discomfort, even take a walk on a windy day without discomfort.

Over the weekend, I experimented with using them before inserting my scleral lenses, and they seem to keep the area of my eyes beyond the lenses moisturized and more comfortable, a big plus.

However, there is a catch.

EvoTears are only available by prescription in the U.S. A one month supply with my Medicare insurance costs about $180. Meanwhile, in Europe (they are made in Germany), they are sold over the counter and cost about one-tenth of that co-pay.

My optometrist advised me to look on EBay, and sure enough, I found a supplier in Greece. The cost, including shipping, was about $60. My drops arrived within a month of my order (much sooner than the 2-3 month estimate), wrapped in white plastic tape printed with large red Greek letters (no idea what they meant) and a form that stated the shipment had passed U.S. Customs (thank goodness). I had to sign for them.

And so, on our next trip abroad, I will be on the lookout for EvoTears. Meanwhile, I’ll be ordering more from Greece. And maybe at some point in the not-too-distant future, the U.S. healthcare complex will find a way to make these as affordable here as they are abroad.

Not holding my breath.

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: Ed Leszczynski

Reverse Engineering

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Habits are comforting. You do something a certain way, every time, that works. No surprises. You know what to do and, for the most part, how it will turn out.

This is especially true for me when I take my walks around the neighborhood. I have a certain route that I always follow, always facing traffic, always past the same houses. It’s never boring, because I always notice new details that vary with the weather and season.

But sometimes, it’s good to shake things up. On Monday, I set out on a beautiful sunny afternoon, taking a break after lunch and before my next Zoom call, up the street per usual. Except there was a big truck at the top of the street and bunch of landscapers swooshing around dirt with those obnoxious leaf blowers. Supposedly they were cleaning up, but it looked like a small dust storm.

So, I turned around and walked the other way. This turned into reverse engineering my habitual neighborhood stroll, and I realized that I was a bit confused. Even as I’ve walked this route many times, I rely on familiar visual points of reference going in only one direction as I let my mind wander. Reverse the process, and everything looks different. Where do I turn? Am I on the right street?

It was actually quite surprising. And a good way to wake up my brain.

Habits are comforting. But they’re also confining.

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: Wilhelm Gunkel

Birthday Jaunt

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Covid over (despite a scare last Monday when I developed a sore throat that, fortunately, resolved on its own), Al and I celebrated my birthday last Wednesday and Thursday with a quick trip to New Haven and New York City. My goal was to see a couple of art exhibits, one at Yale and the other at the Neue Galerie in Manhattan. The weather was sunny, the art stunning, the food excellent.

We stayed overnight in New Haven at a hotel that functions solely on electricity and is fossil-fuel-free, the Hotel Marcel, named for Marcel Breuer, a Bauhaus luminary who had originally designed the building as the corporate headquarters for Armstrong Rubber Co. Converted to a hotel with a commitment to sustainability and many curated Bauhaus details, it aims to be the first certified “passive house” hotel in the U.S. by the end of next year.

So, it was a fascinating trip, on many levels. Here are some of my favorite pieces from the Yale Art Gallery (no photos allowed at the Klimt landscape exhibit at the Neue Galerie). Photo above is one of my favorite NYC views, the constellation mural and lights on the ceiling of Grand Central Station. Enjoy!

Edvard Munch, Toward the Forest I, 1897
Ernst Ludwig Kirchner, Schlemihl’s Encounter with His Shadow, 1915

Joan Miró, Jeune fille s’evadant (Girl Escaping), 1968
El Anatsui, Society Woman’s Cloth (Gold), 2006
Paul Klee, Heitere Gebirgslandschaft (Joyful Mountain Landscape), 1929
Wassily Kandinsky, Mit baumtem Kreis (Multicolored Circle), 1923
Josef Albers, Skyscrapers A, ca. 1929

 

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.

Spring at Last

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On Sunday, I walked outside without a coat for the first time this year. What a blessing, especially after feeling so cooped up 10 days ago with Covid. It’s been spring on the calendar for more than a month, but this was the first day that really felt springy.

As far as I can tell, I’m done with the virus. Whatever lingering sinus congestion (mild) is now attributable to allergies (the downside of spring). When I went for a routine pulmonary function test on Friday, at first the respiratory tech was not sure if she could administer it to me, given my recent Covid experience. But fortunately she was able to check with the hospital’s chief of infectious diseases, who agreed with my expectation that, given revised CDC protocols, I was free and clear.

(In case you’re not aware, the new guidance basically says that after 24 hours free of fever without OTC meds and no symptoms, you can go out masked. After five days of masking, you no longer need the mask, which is where I was on Friday, eight days from no symptoms, thanks to Paxlovid.)

I completed the test, which is never easy at this point, but the good news was that my diffusion rate (not stellar) had not really changed—which has been the case for several years now. So that was encouraging.

And a relief after my other health debacle last week—skillfully scratching my cornea in my right eye on Thursday when I was putting in my scleral lenses. I wasn’t sure, at first, why my eye was bothering me with the lens in place, because it bathes my eye in saline. But once I removed it, my eye continued to smart, and going outside in bright sunshine was truly uncomfortable.

Don’t try driving with a scratched cornea. I did okay, but my eye was tearing and I could barely keep it open. Bad idea. Very bad idea. Back home, after flushing my eye with drops, I used some eye gel and covered my eye with gauze and paper tape for several hours, which made it tolerable.

Fortunately, on Friday, before the PFT, I saw a specialist at the local college eye clinic, who assessed it and thought I was on the mend, though he was prepared to do an emergency debridement if need be. Thank goodness that wasn’t necessary. And I was fine by the weekend.

So, all the more reason to be glad to walk outside without a coat or a jacket or even a sweater on Sunday. No more Covid. No more eye pain. Just sun and flowers and blooming buds on our new cherry tree. A good way to begin a new week.

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.

Something Completely Different

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The sun is bright overhead as I write on Monday afternoon, a few hours before the solar eclipse is set to begin here in Central Massachusetts. We’re expecting that the moon will block about 90 percent of the sun at 3:28 p.m. I have my two pieces of cardboard to create a camera obscura, a pinhole in one piece through which I can project the eclipse’s image onto the other, so as not to fry my retinas.

On a day of a rare celestial phenomenon, it seems all the more appropriate to break from my routine here and share some good news that has nothing to do with scleroderma. I’ve occasionally menioned on this blog about writing my yet-to-be-published work of historical fiction, Line of Flight, set during the First World War. It’s the story of a mother’s journey to find her estranged daughter, who has run off to France with her beau to volunteer for the French ambulance corps. The good news: within the past few weeks, two excerpts from Line of Flight have published on two separate online literary journals.

And so, in an act of shameless self-promotion—and if you’d like to read something that will take your mind off this nasty disease and related medical concerns, or any other stress in your life—I share a few links:

  • The opening of Line of Flight appears in the April 2024 edition of Embark, which presents openings of ten unpublished novels, twice a year. This happens to be their 20th issue, and I’m in good company. You can read my novel’s opening here.
  • A chapter called “The Sinking” is in the spring 2024 edition of The Writing Disorder, an aptly named literary journal for those of us afflicted by this form of art. The action takes place on the fated last voyage of the Lusitania on May 7, 1915. Read it here.
  • I’ve started a Substack newsletter, History Making, that digs into lessons learned from researching and writing historical fiction, as well as other works of historical fiction that I admire, the long and winding road to publication, and related topics. I’m publishing a post twice a month, and subscriptions are free. So, if you’re curious about the writer’s life and this genre of fiction, you can find it all here.

I said none of this has anything to do with my scleroderma—but that’s actually not quite true. When I was growing up, my hands were extremely dexterous. I could make any kind of art or craft, and I played numerous musical instruments. Once, when I was perhaps ten years old, I recall lying in bed and thinking about what it would be like to lose one of my senses. I decided I would never want to lose the touch of my gifted hands.

That was not to be. But I have realized over the decades of dealing with this disease that writing is my art form, my way of creating images and making music. It took me eight years and twelve drafts to get my manuscript to the point where I feel ready to seek publication. And I’ve been seeking an agent and/or publisher for the past two. That involves a lot of patience and persistence and a refusal to give up—all skills I’ve honed through living with scleroderma.

So, getting this far with my novel is a major milestone, indirectly inspired by managing a complex and chronic disease. And, with any luck, my manuscript will get into an enthusiastic publisher’s hands sooner than the next total eclipse of the sun.

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: Jongsun Lee