Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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

Turtle Time

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For my birthday, a friend who knows me well gave me a copy of Sy Montgomery’s wonderful book Of Time and Turtles: Mending the World, Shell by Shattered Shell. I have a thing for turtles and their slow, measured pace through life.

Back when I ran a marketing department for a small college, I used to give my staff little turtle figurines as a reminder to take the time to do the job right, to avoid spending twice the time fixing it. They loved the concept and permission to go slower in a society obsessed with speed.

I can’t say I always follow my own advice, but I have a collection of turtles in my home office to remind me. From Montgomery, I’ve learned more about these prehistoric creatures, how they are gentle (even snappers are much less dangerous than their stereotypes), steadfast, and determined, somehow managing for millennia to beat incredible odds against their survival. Beyond natural predators, our modern world has compounded those risks with cars that speed across turtle nesting pathways, pollution and development that destroys habitats, and climate change that affects the gender of incubating turtle embryos, to name just a few.

Still, in their own plodding way, turtles persist.

Rescue organizations help, as much as they can, and their volunteers are incredibly dedicated. Montgomery takes you into this world of rescuers, in beautiful prose that inspires. In a chapter about her efforts to help release turtle hatchlings back into their native environment, near a busy highway that pregnant turtles must cross to lay their eggs, she writes:

Two kinds of time exist side by side: the frenzied, fleeting, harried time, rushing along like the cars on the interstate, and the eternal, cyclical, renewing time of the seasons. The turtles traverse them both. Following them to the world just outside the highway guardrails, we enter the embrace of the wild, beating heart of nature, escaping for a moment from the trap of transience.

As the pace of our lives urges us to move ever faster, faster, it feels so good to settle down with a wonderful book about turtles, downshift, and breathe. May you have a slow, peaceful, reflective day.

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.

Until Next Year

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Last Wednesday night marked the beginning of Passover, when we always host the first seder for our extended family. Al’s first cousins always host the second seder. This is a family tradition that dates back to Al’s mother and her youngest sister, who alternated hosting the two festive meals every year, when we join Jews around the world in retelling the Exodus story.

Even though we share the meals between the two families, it’s still a lot of work. My hands were in rough shape as the holiday approached, with six fingers in bandages, due to persistent ulcers and calcium bits that had chosen just this time of year to travel up to the surface and hang around without popping out. This feels like having grains of sand stuck under your skin. No fun.

Fortunately, our younger daughter had already planned to come up from Philadelphia to help out with the cooking for three days. Yes, it takes that long, because I can’t help myself. I always plan a very special meal with lots of courses. Even when I’ve mastered all the recipes and know how to pace myself with the meal prep, it’s just a lot of work.

So, we cooked and shopped and cooked together for several days. She did the lion’s share of the chopping and mixing and frying and baking, while I directed and handled a variety of smaller details that were essential for the final meal. Here’s what we made: Egyptian charoset, which is a mixture of dates, raisins, ground nuts and sugar; hard boiled eggs; pickled salmon (a family favorite, as an appetizer); Egyptian potato soup; spinach patties; roasted carrots, beets, and turnips; a salad of oranges, avocados, red onions, arugula, and a cinnamon vinaigrette dressing; apricot sponge cake, chocolate chip meringue cookies, strawberries, grapes, and chocolate for dessert. And, of course, there was plenty of matzah, including gluten free.

It was a hit. Worth all the effort. We had fun cooking together, though I was quite tired afterwards.

Learning how to ask for and accept help is a crucial part of living with scleroderma. I’m very grateful to our daughter for being so willing to step up and keep the family tradition going. Until next year . . .

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.