Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Cutting Bandages

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Every morning and every night, when I get dressed and before I go to bed, I cut bandages for my ulcers. I divide them lengthwise to layer over my fingertips, then wrap a whole bandage around each finger to secure the half bandages in place. It’s become a ritual, this hand management, a routine essential to avoiding infection, a pit stop for damage control, a meditation.

For the past two weeks, as I traveled in Tel Aviv, Jerusalem and London, this ritual-of-necessity anchored me. No matter where Al and I were staying or who we were with, twice a day I had to stop and take care of my hands.

I cut bandages on my fold-out tray in a British Air Boeing 777 en route to Tel Aviv, on a bed in Al’s cousins’ apartment in Ra’anana before sundown on the Jewish Sabbath, at the kitchen table in our friends’ Tel Aviv pied-à-terre over a 1:00 a.m. heart-to-heart about letting go of your adult children, at an old oak table in our cousins’ London flat after our late night arrival from Israel, wanting only to go to bed and knowing I couldn’t, yet.

I was in the midst of cutting bandages when Mindi came to greet us at our friend’s apartment in Tel Aviv, the morning after we’d first arrived. I hadn’t seen her for nearly six months, since she’d left to make a life for herself in Israel, so I jumped up from the table, fingers half-done, to give her a big hug.

And I was cutting bandages last night, sitting on our own bed once again, relieved to have peeled off the day’s grubby dressings, blackened by twelve hours of travel. Were we really at the Tate Museum in London that morning?

Sometimes, the bandaging ritual during our journey was a damn nuisance, the last thing I felt like doing before leaving the house for the day’s adventures or when all I wanted to do was go to bed.

But at other times, it was peaceful, a time to collect my thoughts when everyone else was either asleep or away, an island of quiet to sort out what I’d seen and done and learned that day. As I’d cut the bandages, I’d listen to the familiar sounds of an unfamiliar setting—a wall clock’s tick, a dog’s bark, the click of heels on the floor above, the subterranean rumble of nearby Tube trains—and feel grounded.

I needed that stillness. Travel is so packed with newness, the unpredictable, the need to process so much information quickly and make snap decisions based on estimates of how your experience of your own world approximates this one, even though the two may be only tangentially related. Much as you’re constantly on the go, to fully appreciate the experience, it’s essential to slow down and just be.

So, I guess I have my bandages to thank for that.

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.

Good Medicine

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Half-way around the world from home, I’m writing at our friends’ kitchen table in their Tel Aviv apartment, watching a lemon sway from the branch of a tree on the neighbor’s patio, listening to the swish and blare of traffic, the wall clock’s soft tick, a distant outdoor chime of Rock-a-Bye Baby, a jackhammer’s clatter.

Al and I have traveled nearly 5,500 miles to get here, partly for business, partly to see his family, and mostly to visit Mindi, our eldest, who has been living and working in Israel for almost six months.

It has taken the past four days for my body to adjust. The trip was, by most travel standards, easy—our flights were on time, our connection a 20-minute walk through cavernous Heathrow. We had minimal turbulence, ample food, excellent service, and our bags arrived with us. But for me, it has been very strenuous.

I haven’t traveled abroad in 16 years. Then it was challenging because the girls were young. Now it’s challenging because I’m getting older, my hands are more damaged, and I don’t sleep as well, even under the best of conditions.

I was prepared, but not. I packed well-organized carry-ons but didn’t realize that I had to pull out my laptop for security checks in Boston and London, which required unzipping and unpacking and repacking and re-zipping twice. I knew we’d have in-flight meal service but didn’t anticipate all of the myriad shrink-wrapped and hermetically sealed food items and utensils that I couldn’t open without Al’s help. I wore soft sweat pants and brought slippers for the plane but realized as we squeezed into our seats on both flights that comfort and coach don’t belong in the same sentence.

All of this took a toll on my body, especially my hands. So many barriers, from the seat belt clips that I had to pry open to the lavatory door’s narrow pull grip. With a current count of eight ulcers, I knew I needed to change all of my bandages at some point along the way or my skin would deteriorate, but I also knew I needed to be meticulous about keeping the wounds clean in the process.

I solved the problem somewhere high over the Mediterranean, using disposable aloe hand wipes to clean my fingers before replacing all the dressings. One of the flight attendants, noticing the mounting pile of bandage wrappers on my tray table, asked if I needed any help. No, I said, I do this all the time (just not at 30-thousand feet).

Sleep was elusive. I avoided everyone’s advice to take sleeping pills because I didn’t want to get groggy and dehydrated. So I dozed as much as I could and caught up over the next few days.

Yes, it was a major challenge. But so worth it.

There is no better medicine in the world than seeing your daughter all grown up, finding her way in a complex foreign culture, thriving. And there’s no better feeling than knowing, despite chronic medical challenges, you can still fly halfway around the globe to see her new world through her eyes. And you’d do it again, in a heartbeat.

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.

Monday Night Pilates

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We’re lying on our backs, the four of us, each on a black padded platform carriage called a reformer, our legs extended at 45 degrees, our heads and shoulders curved forward, straight arms pumping alongside our torsos, hands in straps that pull against a combination of springs and our own body weight, doing The Hundred.

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Welcome to Monday night Pilates. Our instructor calls out the count. We pump and breathe in unison, shew-shew-shew-shew-shew, trying to keep our backs imprinted flat against the platform, trying to move our arms without moving the carriage, trying to suck in our guts and keep our legs up and not strain our necks.

I’ve been taking Stott Pilates for about four years now, ever since I decided I was losing range of motion and hunching my shoulders so much to keep warm that I was beginning to look like a little old lady. I’ve worked my way up from introductory mat classes to the reformer, which looks a bit like a medieval torture contraption. But I actually like the workout—especially once our hour is done.

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My classmates range from forties to seventies, all moderately fit, and we enjoy kvetching and an easy camaraderie as we sweat and strain. Our instructor, a former Air Force Academy gymnast and competitive ice skater, is just the right combination of tough, precise and caring. She pushes us to the point of exhaustion, but also offers me creative modifications for any move that my joints won’t allow me to do.

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Halfway. Around this point my head feels like it weighs a ton and I struggle to keep it raised. But I keep pumping. And wondering, why am I doing this to myself? I used to hate gym.

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But the workout is essential. If I miss a week, I feel it the next. And if I miss two weeks, I start feeling crummy. Keeping my joints moving and my muscles strong and my posture aligned make a huge difference in my ability to get through the day, sleep well at night and stay positive about my health and whatever other stress I’m managing.

Plus, it makes me feel mighty. I never exercised seriously growing up. Here I am, 57 years old, with all sorts of crazy ailments, and I can kick butt. Sort of.

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I stare at my thighs and wonder why, with all this exercise, I can’t get rid of the cellulite. Pump-pump-pump-pump-pump. My neck feels like it’s going to snap. Our instructor always says we can put our heads down if we need to, but I don’t want to cave.

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Almost there. Keep going. Sometimes she forgets the count and skips a set of ten. No such luck tonight.

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We bend our legs to a table-top position and squeeze our bodies like a fist, then, relief, roll our heads down and lower our feet to the platform.

I adjust the platform tension and check the clock on the wall. Half-an-hour to go. Next, front rowing, bicep curls, tricep presses, I’m getting stronger, my muscles are shaking, shew-shew-shew-shew-shew.

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.

Winter Cometh

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It’s been an unusually mild winter here in Massachusetts—not counting the freak snow storm we had back in October that damaged so many trees and knocked out power for days throughout the Northeast.

In fact, we’ve had a whole lot of weird weather this year—including a tornado, an earthquake and a hurricane-turned-tropical-storm. Anyone who doesn’t think there’s something strange and disturbing happening to the climate is either in deep denial or a Republican presidential candidate. But I digress.

Now it’s finally getting cold. We had about an inch of snow late last week and another four over the weekend. Temperatures are well below freezing at night and pretty brisk during the day. And I’m beginning to want to hibernate.

Going outside in New England winters is always an expedition for me. I need to bundle up big time to keep my Raynaud’s in check.

Every day I put on my leg warmers and wrist warmers and sweaters and fleece vest and whatever other layers I need to stay warm in the house, plus all the external layers when I venture outside. I end up looking like an eskimo half the time that other people are sporting mid-weight coats or jackets. I used to feel ridiculous, but now I don’t care what anyone thinks. It’s just what I have to do.

And all those layers can have unanticipated benefits. Last Friday afternoon, I had finished my work for clients and was wrapping up a first draft of this post when our 13-year-old golden, Ginger, insisted on nose-batting my hand away from the keyboard to tell me it was time to go for a walk. Since I’d been writing about contending with the cold, I decided she was right.

So I put on my deep-tread walking shoes, my warmest down coat, my shearling hat and my down mittens, and we headed outside. As we walked along our snow-packed street, a dozen high school girls from the nearby prep school jogged past, clad in thin black leggings and ski jackets, ponytails bobbing.

I pulled up my hood against the wind. Warmer now, I didn’t mind Ginger pausing to inspect each lamp pole on our leisurely trek around the block. As we rounded the corner back toward our house, we stopped to let the runners jog by again. A straggler ran past. Farther down the block, another labored to catch up.

Then Ginger skidded on some ice. My feet flew out from under me and I fell flat on my back, banging my left elbow and whacking the back of my head on the icy road.

The second straggler ran over and offered me a hand. I thanked her, got up on my own and walked, shaken, with Ginger back home. Nearly thirty hours later, I’m feeling mostly back to normal, no longer spacey, no more mild headache, just some strained muscles. And I’m sure I was spared a concussion by my thick hat and down hood. Not even a bruise on my elbow, thanks to all the padding.

One of my rheumatologists always used to ask me, only half-joking, why I wouldn’t move to San Diego. I’d quip that I wouldn’t be able to stand the air conditioning. After this weekend, and whenever I feel stuck in a January deep-freeze, I’ll admit the idea has some appeal. But.

This is my home. It’s been my home for more than 30 years, now. Yes, it gets too cold. But I have dear friends here, Al’s family within a hour’s drive and a tight-knit synagogue community. I have an outstanding team of physicians who know me and my history really, really well. I love the scenery and four seasons, even the snow. I love my home. Our daughters grew up here. My parents and Al’s parents are buried here. We have roots.

All of that is very hard to replace. And the stress of adjusting to a new community, the amount of time and effort involved in building new relationships, aren’t worth a warmer climate (especially given all the extreme weather of late—for all I know, if the oceans do rise, we may end up with beachfront property someday here in Central Massachusetts).

So, for now, I’ll continue to stay put. And buy a pair of ice cleats.

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.