Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

In Transition

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Dare I say it? Finally, spring has arrived. “I thought it would never get here,” one of my neighbors remarked as I walked by his house Sunday afternoon. I commiserated.

Despite last week’s snow (yes, snow), a few tulips, daffodils and hyacinths adorn gardens along my route. In our own shaded rock garden, cheerful miniature daffodils greet me as I enter the back door to our kitchen. Buds on our Callery Pear are swelling, and there is a reddish mist on the maples down the street.

Best of all, I am starting to shed my warm layers. I even walked with my coat open on Sunday. Without gloves. Miraculous.

In a burst of my own creative energy, I decided to start a new sewing project. I haven’t considered anything that hand intensive for about a year, now. The project is a light-weight, unstructured coat for transitional weather. I found it online, a pattern you download and print. It took me a few hours after I returned from my walk to piece together the tiled segments, then cut out each piece and mark with sewing construction notes.

On Monday, a few fabric swatches I’d ordered arrived in the mail. They are luscious, lovely wool tweeds, but I’m not yet certain if there will be enough yardage available for the coat (end of season bolts). So I will keep looking.

What pleased me the most, so far, is that the process of assembling the pattern pieces—aligning and cutting and taping—was both manageable and fun. No hand problems or pain. I know this is going to take some time to finish. I hope it won’t be fall before I’m done. But that’s the beauty of sewing a coat for transitional seasons; even if it takes me all summer to complete, I’ll be able to wear it when I’m finished.

As with everything I do now, I have to refigure how to use my hands post-surgery. Pacing myself through a sewing project is essential. I don’t want to mess up my hands in the process. But I also don’t want to avoid one of my favorite creative hobbies for fear of hurting myself.

Spring has arrived late this year. We may still have some chilly set-backs. I can’t recall when I last pulled out my sewing machine and serger—at least a year has passed. With longer days and warmer weather, I’m ready to try again.

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.

A Matter of Distinction

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A friend asked me the other day, “What’s new?”

“It’s my birthday on Wednesday,” I replied.

“Oh, are you going to be 65?!” he asked, intending it as a jest.

“No, 64. But 65 would be great, because then I’d finally be eligible for Medicare,” was my rejoinder.

I certainly am looking forward to being relieved of the stresses and uncertainties of employer-based health insurance. But in the meantime, I’m also looking forward to my birthday tomorrow.

Al and I decided to celebrate this past weekend, staying overnight close to Boston for a special dinner out on Saturday night, a great performance by Berlin-based Max Raabe & Palast Orchester at Berklee College of Music, a wonderful brunch Sunday morning with Mindi, and on to an afternoon at the Museum of Fine Arts. I came home feeling celebrated and refreshed.

This, despite some really nasty, cold weather that precluded any chance to wear festive springlike clothes for the occasion. Instead, I decided to decorate my hands.

I haven’t worn any of the beautiful heirloom rings that belonged to my mother and grandmothers in many years. Why draw attention to my fingers? They’re so distorted, especially now, after all the surgery last fall. Or so I’ve told myself.

But Saturday afternoon, as I packed my bag, I reconsidered. Why not? The jewelry reminds me of women that I loved. Both my grandmothers were very elegant, with incredible fashion sense and strong, individual taste. My father’s mother always wore a beautiful opal ring, set like a flower with small opals as petals.

As I child, I wondered why she didn’t have a diamond ring like every other married woman I knew. But now I can really appreciate how distinctive a statement she was making.

So that’s the ring I chose to wear for my birthday weekend. I could only fit it on my left pinky, next to my wedding ring. The gold of one does not match the other. I didn’t care. It simply made me feel good to touch its detailed surface and remember her. It also felt good to assert to my own sense of style.

My fingers are certainly distinctive. And I have ring to match.

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.

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

Step by Step

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I’ve been walking a lot in recent days. Monday afternoon, the sun was bright and the air crisp as I took my half-hour afternoon walk around the neighborhood for the first time in weeks, after all the Nor’easters of late. Everyone seemed to be enjoying the sunshine. Neighbors chatted as their leashed dogs waited patiently. Couples strolled. A little boy pushed his scooter down an empty, dead-end street. Clumps of snow seeped silently into the ground.

On Saturday, I did more walking—about six miles. With a group of teens and adults from our synagogue, Al and I hiked to City Hall for the local March for Our Lives. After a rally of inspiring student speeches, several thousand of us walked down Main Street in support of common sense gun control, from City Hall to the old Court House, the line stretching for blocks. Al and I peeled off as the march circled back to City Hall, stopping off at the Art Museum for a break and then walking home.

I wasn’t sure if I could do it all. My feet are easily tired, and by the time we were on our way back, my knees and hips were protesting. But some ibuprofin and a nap helped. By Sunday morning, my body was mostly back to normal.

I’m lucky. My biggest worry when I go out for a walk is how well my feet and joints will hold up. Not so for too many children in our nation who have to worry about getting shot as they walk through their neighborhoods to school.

When I was in elementary school, we had air raid drills to practice what to do in case of a nuclear attack. The idea sounds ludicrous now. Once, when I was in the fifth grade, we took the hands of first graders and walked with the rest of the school to a nearby public building that housed a community fallout shelter. We all thought it was a fun excuse to get out of our classroom.

The lockdown drills to practice for an active shooter, so common for today’s school children, are deadly serious. We may not all agree on what needs to be done to end the scourge of gun violence in our nation. But we can at least agree that this is a public health crisis that demands everyone’s involvement in finding a solution. One step, one march, one vote at a time.

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.

Wanderlust

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So . . . we ended up with two feet of snow from Skylar last week, and now we’re expecting another five to ten inches from the next Nor’easter, Toby, on Wednesday night into Thursday morning. (Who comes up with these names, anyway?) Fortunately, we’ve had some melting in-between.

But I’m really getting tired of this weather pattern. And I’m starting to yearn for our next travel adventure to somewhere beautiful and warm in the summer. Which brings me to the topic of traveling with scleroderma, or any other disabling disease, for that matter.

Travel is strenuous when you’re healthy. All the more so, when you have to deal with all the possible complexities of this disease. But I’m determined to keep visiting new parts of the world (new to me) and discovering other cultures and viewpoints, as long as I’m able, one way or another. The benefits of always learning and growing far outweigh the fatigue factor. So I’ve gathered a few travel resources that address some of the biggest issues for those of us living with some form of disability, below.

Many of the resources out there focus on wheelchair accessibility. Some also address the broader issues of traveling with a disability that is less visible—and therefore more readily dismissed by people who should know better. I’ve selected a range, here, to help you get started on your own travel adventure:

Lonely Planet Accessible Travel Online Resource: This free PDF includes a wealth of information, from a huge list of online resources to tips for traveling with access issues. Lonely Planet guides are a favorite of mine, and the fact that they make this one a free download is a big plus.

Rick Steves’ Tips for Travelers with Disabilities: You may know Rick Steves from his PBS travel program. This blog post list basic, common-sense tips for planning ahead, especially if you need a wheelchair accessible hotel room or wonder how to find accessible bathrooms in a foreign country.

Society for Accessible Travel & Hospitality (SATH): Founded in 1976, SATH offers travel resources, information for travel agents, plus travel tips and access information for people living with a wide range of disabilities.

Travelling with Scleroderma: This PDF download from Scleroderma Australia provides a great summary of how to travel with oxygen if your lungs are compromised.

Disabled Traveler/ SmarterTravel: Another useful blogpost with a roundup of online resources.

“What We Get Right About Accessible Travel” from CNTraveler: From my favorite travel podcast, here’s an episode featuring Alysia Kezerian, founder of the Instagram account Wheelies Around the World, and Traveler contributor Julia Buckley, author of Heal Me: In Search of a Cure. Both women travel extensively; both have disabilities. Kezerian has relied on a wheelchair since a spinal cord injury in her twenties, and Buckley lives with a rare disease that causes joint dislocation. Well worth a listen, for practical advice and a lot of inspiration.

Happy trails!

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.