Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Confidence Boost

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Passover preparations are always a major challenge for my hands, and this past week posed no exception. To my great advantage, Al readily accepted the role of sous chef, the only way we could do all the cooking in time for the first seder, which we hosted on Friday night.

Since we serve a lot of vegetarian entrees, there was much peeling and cutting and chopping. Staging the meal involves advanced planning and careful timing of what to make a day ahead and what to make within a few hours of serving. Al did most of the prep, and I did the strategy and stirring and seasoning. Our daughters helped with last minute errands and crunch time details. Per usual, we were working right up to the doorbell’s ring. But we made it, the seder was thought-provoking, the meal delicious and enjoyed by all.

Friday night, however, I was totally exhausted when our guests left. My feet were shot from standing all day in the kitchen, and my back ached. My hands, remarkably, were in pretty good shape. Our cousins hosted the second seder on Saturday night, which provided a good respite.

By Sunday, when we hosted another big family meal, I had rested up and was able to do some of the cooking on my own. Indeed, I haven’t done this much in the kitchen since my hands fell apart last summer. I could actually grasp the handle of a French chef’s knife and chop fairly efficiently. I was very careful not overdo, and I have no new digital ulcers, as a result (at least, not yet).

My confidence got another boost on Monday afternoon, when I graduated from my post-surgical occupational therapy. My OT checked my grip strength, compared to our last appointment about a month ago, and the exercises she had given me paid off with a 20 percent improvement. I am well within functional range, which is so encouraging.

All of this means a great deal at this time of year, when my hands seem to be most vulnerable. Though I have not found any definitive research on seasonal patterns in skin ulcers, the spring months are typically my worst. It was around this time last year when my digital ulcers began to go out of control, in part exacerbated by Passover preparations. But the weather definitely has something to do with it—the constant warming and cooling, the dry air from heating systems, the transitions from warm house to not-quite-cold-but-cold-enough outside—all seem to add up to more trouble.

I’m monitoring my fingers very carefully, trying to be mindful and set limits on what I can and cannot do. But it’s always good to discover that the boundaries are wider than I assume. Just like the snow that blanketed the trees Monday morning and was gone by sundown, looks and expectations can be deceiving.

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.

Image Credit: Syd Wachs

Between Storms

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Last weekend’s Nor’easter was supposed to dump up to a foot of snow on our fair city, but we lucked out with only rain and wind and no loss of power in our area. Tomorrow, however, we are in for it—possibly a foot to 18 inches, if the forecast is to be believed for Central Massachusetts.

In the meantime, Al and I managed to escape for a visit with Emily, our younger daughter, in Philly, to see her apartment and meet her colleagues at work and take in some of the city’s many highlights. So it was on Monday that we went to the annual PHS Philadelphia Flower Show, which is the largest and longest running such event in the U.S. Sponsored by the Pennsylvania Horticultural Society, it certainly lived up to its reputation.

And so, Dear Reader, to help us all escape from winter storms and stressful news of late, here are some of my favorite images from our visit. Be sure to take a close look at the last one—it’s made entirely of pressed flowers.

 

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.

 

How’re Y’all Doin’?

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Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, indeed.

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.

Arts and Flowers

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We’re having a brief respite from the cold before bitter weather arrives once again. So what better time to get a mental and spiritual break from winter than this past weekend at the Worcester Art Museum’s annual Flora in Winter exhibit. Local florists and garden club mavens create beautiful floral interpretations of art in nearly every gallery. Here are ten 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.

Baking Bread

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As of today, I am two-thirds of the way through my HBO treatments: 20 dives down, 10 to go. Last week’s mishegas about another potential infection was doused effectively with medical grade bleach soaks for the recalcitrant graft and a visit to Dr. S, who reassured me that the finger looked fine. Thank goodness!

Meanwhile, I continue to make more progress. Each day, the edges of the grafts pull a little farther away from surrounding skin, which is what they are supposed to do as new skin forms beneath. My fingers feel more able, despite missing tips and odd shapes.

I didn’t cook Thanksgiving dinner (Al’s department—and very good it was, too), but I did make the stuffing that we baked separately in the oven (main course was pecan-crusted salmon). This is one of the first times in about six months that I could tolerate stirring contents of a hot pan. Previously, the rising heat and steam were very painful to my exposed, over-sensitive wounds. Not to mention, I couldn’t hold the spoon.

My biggest accomplishment in the kitchen, however, was finally being able to bake bread again. It has been my practice for years to bake fresh challah for our Friday night Shabbat meal. I have a great recipe from a cookbook that my sister gave me nearly 30 years ago, and I’ve been making it since Mindi was a toddler who relished punching down the risen dough each week.

It’s the highlight of our Shabbat dinner, as well as a source of pleasure and pride for me to provide my family and friends with delicious homemade bread. But my hand debacle has made this favorite, meditative task an impossibility since summer. Al took over baking after my surgery and has become quite adept. Still, I missed doing it myself.

So this post-Thanksgiving Friday, as I was hanging out in the kitchen with my two visiting daughters, I decided to see if I could once again slip my fingers into a pair of de rigueur disposable rubber gloves, essential for any handling of raw ingredients—and, voila, to my amazement, they fit over my bandages without any discomfort! I proceeded to proof the yeast, pour flour, sugar, salt, oil and eggs, plus the yeast and warm water, into our old Cuisinart, mix the dough and pull it out onto the floured bread board.

And, as my daughters gave approval and encouragement, I kneaded the dough by hand. This is my favorite part of baking bread. There is something so magical and satisfying about feeling the dough transform from a sticky mass to a smooth, soft, elastic whole. My hands had not lost too much strength or touch. Into the oiled bowl the dough went, covered with a clean towel, to rise.

I punched it down for the first rising, but Mindi was getting organized to drive back to Boston by the time the dough had doubled in size a second time. “Do you want to punch it down?” I asked. “It was a little hard for me because my fingers don’t bend quite right.” She smiled, then proceeded to expertly punch all the air out of the dough. Still a special moment to share.

Later, when the challah came out of the oven, I sent her a text with a photo.

“Ta-da!” I wrote.

“Very nice!” she responded.

Yes, very nice, indeed.

P.S. This post is my 300th entry in this blog, When I began writing in January 2012, I had no idea where what has become an online journal of my life with scleroderma—and just life, which is really the point—would take me. More than 200,000 words later, I’m still discovering. Thank you, Dear Reader, for sharing the journey, and for your encouraging and thoughtful comments along the way, which keep me going.

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.