Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

And Now for Something Completely Different

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When I am not writing about living with scleroderma or helping my clients with marketing and communications strategy, I pursue my own writing. Fiction, that is—historical fiction, in particular.

Back in 2014, I began working on a novel set in World War I about a mother whose estranged daughter runs off with her beau to drive ambulances for the French war effort, and the mother’s journey to bring her back home. It took seven years to research and write, and it’s taken another four-and-a-half years of searching for a literary agent and/or publisher. But persistence finally paid off, and I’m thrilled to share that my debut novel, Line of Flight, will be published by Köehler Books this December.

I write about the process of creating historical fiction on my Substack, History Making, and you can read a bit more about how this all came about here.

You’ll also find a bunch of essays there about how I researched the novel, as well as the novel I’m working on now regarding art and censorship in Weimar Germany.

As I’ve written here before, we are all much, much more than our diagnoses. In my heart of hearts, I’m an artist. Words are my medium. I’ll be sure to post here when the book is ready for pre-order, for anyone who’d like to read about something other than living with scleroderma. Thanks.

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: Getty Images for Unsplash

700-plus

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I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.

That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.

Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.

Because I can’t let it.

And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a gift.

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: Beth Macdonald

It’s Never Simple

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A few weeks ago, I ordered new glasses. It’s been a few years since I’ve updated my prescription, mainly because I’ve had so much trouble with dry eyes from Sjogrens that it’s very challenging to get an accurate eye exam. My eyesight is often blurred due to lack of tears, and when I put in drops, they blur again for a while. Really tough to get that Goldilocks measurement.

Then there is the issue of frames. I have worn Silhouette frames for years, which are rimless and very lightweight. I have to be extremely careful not to wear frames that put any pressure on the bridge of my nose, because that will accelerate the formation of calcium deposits on the cartilage, which eventually needs to be removed to avoid creating an ulcer. I’ve gone through this uncomfortable surgery several times over the years, and the last time, the ENT plastic surgeon told me it will be very difficult to do again.

When I ordered my new frames, however, the optician persuaded me to try a different lightweight brand called OVVO, which seemed promising. Only problem is that my face is small, and they have limited small styles. I picked one out that seemed good and hoped for the best.

I got the frames last week. There are a few issues.

First of all, the prescription seems to be off. I can see very well when I read—even fine print. But my distance vision seems worse than before. So I have to have another eye exam. I can swap out the lenses at no cost.

Secondly, however, the frames are a bit too heavy. It’s one thing to try them on without any glass lenses, and another to wear them with real lenses. Even as the optician ordered the lightest weight lenses for me, they add just enough pressure to be too much.

Finally, I realized that the shape is not that flattering. I was trying to decide under pressure, when I didn’t have enough time to really think it through. Fortunately I can trade them in for a better pair, or I’d be out a hefty fee.

So it goes. Never a simple solution with chronicity.

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: David Travis

Fast Forward

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Daylight Savings Time crept up on me this past weekend. Really, is it already time to set the clocks forward an hour? I find this adjustment jarring. I’d rather just let the sun tell me what time it is.

According to Harvard Health, we’d all be better off sticking to standard time. But DST has been a national law since 1966, and attempts to do away with it have consistently failed to pass Congress. Given all the insanity in Washington these days, no chance of this becoming a priority.

So, I dutifully set all our clocks ahead Saturday evening. I even went to bed an hour early, since I was pretty tired. It felt later. I should wake up fully rested, right?

Good plan. Didn’t work.

First mistake was reading a very good play after I turned off the TV. It only took me an hour, but that was the hour I thought I’d saved. Then I tried setting up my iPhone for a meditation to help me doze off, but at that moment, my phone decided it was time to update its operating system and shut down to load the software.

When that finally finished, I was too annoyed to relax. Eventually I settled down, then picked a sleepcast story that was far too interesting, all about traveling in Japan. At some point I dozed off, but then woke again to shift positions. Aargh!

By the time I finally was ready to sleep, it was at least 1:30 a.m., actually 2:30 DST. Reset my alarm for 9:00 a.m., which was 8:00 a.m. in my circadian cycle still tuned to EST. I got maybe five hours of deep sleep and gave up about 10 minutes before my alarm was set to go off.

Somehow, I still got through the day. As I write this on Sunday evening, though, I am ready to pack it in. Hopefully, my body will reset over the next couple of days. Check out that Harvard Health link, above, for some ways to ease the transition.

Sleep well, Dear Reader. Sleep well.

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: Eric Hoarau