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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

Two Steps Forward, One Step Back

Evelyn Herwitz · June 23, 2015 · Leave a Comment

I made good on my exercise commitment last week—I got to the fitness center twice, once for my barre class and once to ride the stationary bike for 25 minutes, plus I took half-hour walks on two other days.

Then I developed an ulcer in the nail bed of my left big toe. It’s infected. I have no idea how this happened. I am meticulous with skin care. It might have been as simple as picking up bacteria while walking around in sandals. Or just bad karma.

So, I’m back on antibiotics, limping a bit, carefully testing pressure on my left foot. I was able to walk around the block on Monday and get through most of the exercises in my barre class last night.

This is the minutiae of living with scleroderma. Just when you think you have everything in balance, something kicks it out of whack and you have to recalibrate.

But there are much more important issues in the world than an infection in my big toe.

On Sunday, at Al’s initiative, I joined my husband, our rabbi and cantor, and about a dozen other members of our synagogue at morning services at the local A.M.E. congregation. We came to show solidarity over the tragic shootings at the historic Emanuel A.M.E. Church in Charleston, S.C., last week.

Al had called ahead, the previous Friday, to ask if it would be okay with the pastor if we came. We were welcomed with thanks and gracious hospitality. Other members of the community came as well, in a spontaneous show of support. It was heartening to be part of a mixed sea of faces, all gathered to assert that what happened in Charleston was terribly wrong, that we care, that we must pull together as a society to end the violence and bridge the widening racial divide in this country.

Will any lasting good come of all those people, from different backgrounds, gathered together in prayer on a Sunday morning? I cannot say. But I know we helped to comfort our neighbors and sent good will out into the universe, and that must count for something.

After the service, we went out with friends for a Father’s Day brunch, then to the art museum, then home. Al mowed the lawn. I lay down and rested my sore foot.

My toe will heal, albeit slower than I want it to, with a combination of medication and careful tending. I will get back to my exercise plan. There will undoubtedly be other physical setbacks, but I’ll deal with those, too.

Would that our nation’s ills could heal as readily.

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.

Photo Credit: Stròlic Furlàn – Davide Gabino

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, community, exercise, feet, managing chronic disease, resilience

Pep Talk

Evelyn Herwitz · June 16, 2015 · 4 Comments

No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body image, body-mind balance, exercise, feet, resilience

Hail, Caesar!

Evelyn Herwitz · June 9, 2015 · Leave a Comment

I tried an experiment last week. I had to go to New York City on business overnight. There is no easy, direct public transit from Central Massachusetts. So, because I was in Boston during the day on Wednesday, I took Amtrak to Manhattan, and planned to take a bus back home the following evening. The bus was scheduled to make three stops in Connecticut along the way, including a transfer in Hartford.

247603105_e1a7241212_zI’m not crazy about long bus trips, but the plan saved me from having to drive home late at night, either from Boston in the east or from Springfield in the west, if I had gone Amtrak all the way. 

I thought I was being very organized. I had all my tickets printed out, in addition to the email versions on my phone. For some reason, the bus tickets (one for each leg of the trip home) printed out back to back, which rarely happens on my printer. So I assumed it was intentional to save paper.

Wrong. After a full day’s meeting on Thursday, I made my way to the Port Authority Bus Terminal in Midtown and found my gate. Then I noticed, to my dismay, that everyone else in line had two tickets—one to Hartford, and one to their connection.

When it was my turn to present my ticket and photo ID to our driver, I explained my dilemma and asked if I could just show him the ticket and keep it for my transfer. No, he informed me, he had to take it. They don’t accept electronic versions. Only paper. I needed to reprint my ticket when I got to Hartford.

Now, we had 15 minutes in the schedule to transfer busses. I knew the Hartford bus station was small. But I was nervous. And frustrated. If only I’d thought to make a second copy, just in case. After everyone was on the bus and our driver was finishing his paperwork, I asked him again if there was any chance I could show the PDF on my phone to the other driver. No, he reiterated, but he was sure I’d have enough time to take care of it in Hartford.

Nothing I could do but wait the three hours until we got there. We pulled out of the below-ground gate and up into traffic. Lots of it. Our driver welcomed us on the bus and introduced himself as Caesar. If it was too hot or too cold, he said, let him know. No loud phone conversations or music. No photos. I watched a flock of pigeons battling over something on a sidewalk and told myself there was no use getting upset. I just needed to sit back and see what happened.

By the time we got to New Haven, our first stop, we were already 20 minutes late. I was trying my best not to freak out. I called Al and gave him a head’s up—if I couldn’t make my connection, I needed him to drive over an hour to pick me up. Fortunately, he was his good-natured self about this delightful prospect, which at least eased the pressure.

For reasons unknown, on the way to our next stop, New Britain, we got off the highway and onto a series of side roads and byways lined with strip malls, then back on the highway. That put us behind by 25 minutes. I had no idea where we were, so I followed our route on my phone app, just to reassure myself we weren’t lost.

Finally, we pulled into Hartford, a full half-hour behind. I had traded seats with my seat-mate to be on the aisle and able to get off sooner. Caesar told us the gate number for our connection. By a miracle—or, rather, the inefficiency of bus travel—that bus was late, too, and had not yet arrived. So I grabbed my bag and ran to the ticket counter.

The ticket agent was, of course, helping someone else. And. Taking. A. Long. Time. I asked if I could just reprint my ticket, and she told me to wait my turn. Then she announced that her computer was not allowing her to print the other customer’s ticket. Meanwhile, the connecting bus had arrived.

I was at a loss for what to do. Fortunately, Caesar had come to the ticket counter. I’m not sure if he would have checked in anyway, or if he was following up on me. But given that we’d arrived late and he was due in Springfield, he could have just left. Instead, he walked with me back to our bus, pulled out his envelope of tickets, found mine, walked me back to the ticket counter and asked the agent to make me a copy. Of course, the copier was off and needed to charge. Did I mention this is not a 21st century operation? But within a couple more long minutes, it fired up and I had my copy. I thanked Caesar profusely and ran to the connecting gate.

I was the last person on the bus. We sat for another 10 minutes, for reasons unknown, and then departed. I called Al to let him know I’d made it.

“I guaranteed you would,” he said.

“How?”

“I just looked up the directions to Hartford.”

We laughed. Thank goodness. In the end, I made it to our own Union Station just 15 minutes later than I should have and was very glad, indeed, to see Al waiting for me with an open car door.

My knees were shot from the bus ride, with its cramped seating and worn out shock absorbers. And my nerves were a bit frayed. I was really tired. But if it weren’t for our driver, who took the extra few minutes to make sure I was able to make my connection—despite the fact that I was the only one on his bus who did not know the rules of the archaic ticketing system—it would have been a much longer ordeal. Maybe he took pity on me. Or maybe he thought it was ridiculous, too.

Hail, Caesar.

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.

Photo Credit: Daniel Lobo

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, travel

Another Year Older

Evelyn Herwitz · April 21, 2015 · 2 Comments

I had a wonderful teacher in the first grade. Her name was Miss Kelly, and she had short, curly dark hair, a wide oval face and a big smile. She also seemed quite tall, although I wasn’t a reliable judge of height at that age. And she created fun class plays.

Crane BeachThat year, we performed what would now be described as karaoke. Picture a group of six-year-olds singing and pantomiming on stage to musical hits, circa early Mad Men, and you get the idea. (“How come everyone is laughing?” I remember wondering during our performance.)

I haven’t thought of that first grade play in years, but for the past couple of days, one of our songs arose, unbidden, from the recesses of my gray matter and has been cycling through my head—Sixteen Tons, sung by Tennessee Ernie Ford.

You load sixteen tons, what do you get
Another day older and deeper in debt. . . .

It was my birthday on Saturday. Fortunately, the debt part isn’t what brought the song to mind. But another day older is how I felt, for better or worse.

“Are you excited for your birthday?” Mindi asked me a few days before.

“I don’t know. I guess so,” I replied. After turning 60 last year, 61 seems a bit anti-climactic. And there’s something about adding the 1 to the 60 that tipped the scales toward the “older” side of the equation.

When the day arrived, however, I was in a great mood. Something magical always happens to me on my birthday, a feeling that the day is different, special, blessed. The weather was perfect—70s, sunny, azure sky. Flowers that had been hiding for months suddenly dotted lawns up and down our street. On my walk back from Shabbat services at our synagogue, I noticed violets, always a spring favorite.

That evening, to celebrate my birthday, Al and I drove to a dinner concert in a small town in northern Worcester County, at a restaurant venue that draws class acts from around the country. The show did not disappoint: Michael Allman, son of Gregg, performed amazing R&B and Allman Brothers’ classics with Charles Neville of the Neville Brothers on tenor sax and Jeff Pitchell, an outstanding blues guitarist. I was transported back to my freshman year of college, when Sweet Melissa, Midnight Rider and Whipping Post blasted from stereos in every dorm.

Continuing my birthday weekend the next day, after brunch with friends, we drove an hour-and-a-half to the North Shore, to Crane Beach, beautifully maintained by the Trustees of Reservations, a great conservation organization here in Massachusetts. It was chilly, the water was a deep blue and the air, crisp. But I’d forgotten my hiking shoes in our haste to leave, I should have brought an even warmer coat than the one I had, and the latrines were—well, gross is an understatement.

So I was pretty cranky as we set out on our beach walk. I love the beach in any weather, but I couldn’t appreciate it, at first. After grousing to Al as we walked a ways, I plopped down on the sand while he explored closer to the water (he, of course, was quite comfortable walking barefoot while I was all bundled up and still chilly) and lay back to absorb some sunshine.

The break helped lighten my mood. Soon I was exploring patterns in the rocks and the soft shadows left by footprints in the sand. I took some pictures. Al strolled ahead to inspect what was beyond the next curve in the shoreline. We passed other spring beach-lovers, some in winter jackets and walking shoes, others in shorts and flip-flops. I drew my layers closer to ward off the stiff breeze and kept on walking.

Crane Beach EstateAl noticed a path leading up the side of the dunes, with a boardwalk. At first, I was hesitant to climb, but curiosity got the better of me, so up we went.

Well worth the effort, as the path led to a grassy expanse overlooking the ocean—blue and green and tinged with beige above sandbars—and a nearby island. When we turned around, we realized that this was the view at the bottom of a sweeping lawn that extended from the hilltop Crane Estate, part of the Trustees of Reservations property.

As we hiked back down to the shore, I began to feel a bit tired. The wind was still stiff, and we had to walk into the breeze all the way back. By the time we finally reached the boardwalks leading to the parking lot, I was really dragging. We made a brief stop at an antiques store (overpriced) on our drive through a nearby town, then found a local restaurant a few blocks away for dinner.

Waiting for our meal, I was quite weary. “Are you okay?” Al asked. “I think so,” I said, though I wasn’t really sure. I was worried. Here we had just walked the beach for a few hours, and I was totally spent. We’re planning a trip to Europe this summer, with an aggressive travel itinerary, and all I could think of was—how am I going to keep up with what I want to see and do?

The meal revived me, though I could only drive half the distance home, and had to trade off with Al after we got on the Mass Pike. “I’m feeling my age,” I told him.

It wasn’t until later that night, after I had showered and gotten ready for bed, that a light bulb went off in my head: It’s hard to walk in sand. It takes a lot of extra energy, especially when you’re wearing the wrong shoes. And it was cold out, and it’s even more tiring for me to walk into a chilly headwind. Yes. Indeed.

So I stopped catastrophizing about our trip, at least for now. I do have to pace myself when I’m physically active. That’s the bottom line. But I can do it. I have to believe that.

In our first grade class play, the one other song I remember singing was I Whistle a Happy Tune from The King and I. We each had a partner, and we took turns singing and trying to whistle along to the music. I’m sure we looked adorably hilarious for all the parents in the audience, but I took it all quite seriously, as only a six-year-old can: 

Make believe you’re brave
And the trick will take you far
You may be as brave
As you make believe you are . . .

Yes. 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, managing chronic disease, Raynaud's, resilience, travel

Spring Tide

Evelyn Herwitz · April 14, 2015 · 2 Comments

Passover is over and the endless winter has actually ended, with only a few stubborn patches of snow remaining. On Sunday, with temperatures hovering in the ’60s, Al suggested we go to the beach. “Great idea!” I said.

So we packed a lunch for the drive and set out for the South Shore, to a coastline we had never explored along Buzzard’s Bay. It was nippy by the water, and I needed all the layers I brought in the car, but so wonderful to see the ocean again. There’s nothing like sea air to clear the senses. Summer can’t be too far away.

Please join me on our hike at Nasketucket Bay State Reservation. . . .

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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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, resilience, travel, vacation

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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