Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Back on the Block

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It was perfect weather for the beach on Sunday, sunny, in the 80s F, and given that we hadn’t made it to the Atlantic this season, we grabbed the chance for a day trip to Block Island. An hour’s ferry ride from the Rhode Island coast, it was our favorite vacation spot for years with our daughters, until everyone else discovered it, too, and the rents became ridiculous.

So Al and I try each year to get there on a Sunday. As luck would have it, however, given the beautiful weather, a lot of other folks had the same idea. Even as we left with plenty of time to catch the 11:30 ferry, we hit beach traffic that kept adding minutes to our arrival time. I took a GPS-recommended detour, only to have traffic get worse. Needless to say, it was not a relaxing arrival. When we finally got to Point Judith, there was no parking available, so we took a chance of parking in a four-hour spot and risking a ticket.

As it turned out, I had managed to read the ferry schedule backwards—the 11:30 ferry was the return ferry from Block Island—and the ferry to Block Island was actually departing at Noon. We got to the top deck of the very crowded boat with about 10 minutes to spare.

The island was hot and crowded. Still, we made the best of the afternoon, grabbing a good lunch at Persephone’s and then walking to the Town Beach, where we rented chairs and an umbrella. The tide was coming in, so when we took our walk up and down the shore, waves rushed and splashed. My pants got soaked, but I didn’t care, because the sand was cool and the surf, refreshing. And given the heat, my pants dried out quickly. We had our favorite dinner at the Beachcomber, Al got his ice cream at the Ice Cream Place, and we made the 6:15 ferry back, once again with about 10 minutes to spare. When we got to our car, well past a row of similarly parked cars with orange tickets on their windshields, ours had not been tagged. Hurray!

But the highlight of the trip came, surprisingly, on the ferry ride back. We were sitting on the top deck, once again, because there was no room on the other two decks. All of a sudden, people on one side started pointing and raising their phones to take pictures, standing on the benches to get a better view. I was able to get a glimpse of the phenomenon—a pod of dolphins, maybe a dozen or more, leaping through the water, heading toward the island. Everyone was thrilled, like a bunch of little kids. It was great. In that one moment, we were all in awe of Nature’s wonders. Everyone was smiling.

I’ve never seen wild dolphins before. Glorious. May your week be full of magnificent surprises.

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.

Dappled

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There’s a word in Japanese for the light that filters through trees:

Transliterated as komorebi (kō-mō-reh-bee), it is made up of the Japanese characters for tree, leaking, and sun—meaning, literally, the sunlight that leaks through trees. Komorebi refers to the ever-shifting way that sunlight filters through tree branches and boughs, creating dancing patterns on the ground and illuminating the backside of leaves. It’s one of my favorite things to discover when I walk outdoors. And I love the fact that there’s a Japanese word to capture that sensation.

So, when Al and I took advantage of perfect summer weather on Sunday, we went to Garden in the Woods, a 45-acre refuge for native plants in Framingham, Mass., and I tried to capture komorebi with my iPhone’s camera, as well as some delicate plants—and, of course, some turtles. It made for a lovely, peaceful afternoon. Here’s what I found. 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.

And the Winner Is . . .

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And now, a detour from scleroderma and related complexities . . .

As I shared back in March, my World War I historical novel, Line of Flight, at long last has found a publisher, Köehler Books. Over the past couple of months, I’ve been working with their excellent team, preparing for publication on November 17. We went through two rounds of manuscript edits, which turned out to be a productive, painless process. In fact, the text remains largely as written. Kudos to my editor, Joe Cocarro, who caught some important issues with foreshadowing and other details that needed fixing. I was grateful for that and for the vote of confidence in my work (and for learning that when the word ‘then’ is used to denote order of actions, it is not preceded by a comma.)

Recently I have been reviewing text layout and cover designs by Catherine Herold. It’s wonderful to see my words shaping up into book format, and she has been very skilled at creating covers that realize my vision.

Now, here comes the fun part: You get to vote on your favorite cover design! We’ve narrowed it down to two. You’ll see a summary of the novel as well as the two choices in this link.

Your input matters! I really appreciate your participation.

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: Hkyu Wu

Best Vacation Ever

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As a child, I used to watch a public TV program about Japanese brush painting, and I learned how to paint the images that the artist demonstrated. It has been a dream for decades to travel to Japan. And so, for two weeks in June, Al and I made that dream come true. Back home since Thursday night, after a phenomenal trip—strenuous, but worth every minute.

We flew from Boston to Montreal, stayed overnight, then made the 12-hour flight to Tokyo, where we stayed for a couple of nights in a ryokan, a traditional Japanese inn with tatami mats as flooring and a futon bed on the floor. Then it was on to Kyoto by the Shinkansen bullet train. Our accommodation there was a rented home in a family neighborhood, lovingly preserved and decorated. The bedrooms were up a narrow staircase hidden behind a sliding bookcase.

We spent five days in Kyoto, which included a day trip to Nara, the ancient capital of Japan where deer are sacred and roam free. Then we took a Shinkansen to Hiroshima, where we stayed in another traditionally decorated apartment in a residential neighborhood. Our time there included a powerful visit to the Hiroshima Peace Memorial Museum, which commemorates the victims of the atomic bomb attack on August 6, 1945. We also took a day trip to the nearby island of Miyajima, home to UNESCO World Heritage temples and shrines. Then we moved on by train and ferry to spend three days on the island of Naoshima, known for its art museums and galleries. On our way back to Tokyo, we caught a glimpse of Mount Fuji.

Yes, it was another of my super-charged itineraries. We saw exquisite gardens, ancient temples and shrines, museums, shops, street life, and navigated the food scene. Google Translate was a huge help, both for speaking with people and translating signs and other text.

I will be thinking about this trip for years to come. It was inspiring, transformative, and, yes, challenged my physical endurance. But I am so, so glad we went, as is Al. Here are some pictures. 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.

Pharmacy Hack

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My extremely dry eyes, due to Sjogrens Disease, have been giving me a lot of trouble of late. No matter how carefully I manage my set of eye drops to keep them moist and clear, inevitably they begin to blur within a few hours, especially when I’m writing at the computer. It is incredibly frustrating, and I have yet to find the right combination and timing, despite excellent support from my dry eye specialist.

Managing all those eye drop prescriptions is another challenge. However, I am pleased to report that I’ve succeeded in finding a good Canadian pharmacy for one of my drops, which I’ve only been able to get when I or family or friends travel to Europe. EvoTears create a barrier to reduce moisture evaporation. They cost about €25 abroad and are available over the counter. Here in the U.S., they are marketed as Miebo® and require a prescription. The latest price I got via an online pharmacy with an insurance “discount” was $225.

I’ve been wary of ordering from a Canadian pharmacy for several years, ever since another medication I need that is very expensive got impounded by U.S. Customs. That experience led me to discover Mark Cuban Cost Plus Drugs, a domestic supplier that is really excellent. But they don’t carry EvoTears.

So I did some more research recently, and I discovered Northwest Pharmacy in Canada. And I just received my EvoTears in only a few weeks. Total cost: $60 plus shipping. The return address on the box was a New Zealand pharmacy. Apparently they use distributers around the world. It had a customs label, so it was properly packaged and identifiable by U.S. authorities. No issues.

A friend is traveling to Germany this summer who will pick up some more bottles for me, so I’ll be covered for the year.

It’s ridiculous that we have to go to such lengths to get affordable medications so necessary to our health and well being. Thank goodness for the internet. For all its flaws and risks, it is a mighty tool for making worldwide connections and purchases possible.

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: Shraga Kopstein