Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Snapshots

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Monday, Penn Station, 6:33 p.m. I’m standing with a few hundred other people, staring at the Amtrak departure board, hoping that the Northeast Regional is leaving on schedule. Alas, it is not. The encouraging ON TIME message for Penn Stationour 6:43 departure shifts to 20 MINUTES LATE. Then 35 MINUTES LATE. But as the red digital clock display clicks past that deadline, no sign of our train.

I stare at the board, survey the cavernous waiting room, checking to see if I can figure out where a hoard of people are streaming out of one of the gates, indicating our train’s arrival. I listen to classical music—right now, Erik Satie— piping through the PA system, alternating with NYC and Jersey accents announcing all the other trains that are leaving on time, interspersed with a ubiquitous, calming woman’s voice telling us to watch for bags left unattended and other suspicious behavior. “See something, say something,” she melodiously cautions.

Travel is exhausting. I am wrapping up two days of business meetings in metro-New York—much of it devoted to the fall Board of Trustees meeting of The Good People Fund, a wonderful Jewish philanthropy, and a late Monday afternoon meeting with some of my favorite clients, who are based in Manhattan. I enjoy seeing all of these people, learning from them, feeling like I’m making an important contribution as a volunteer and through my consulting practice.

Rubin MuseumBut I am tired. Very tired. Travel requires much vigilance. I have been extra-careful of my bandaged ulcers, wary of getting an infection. Over and over, I’ve cleansed my hands and bandages with anti-bacterial hand gel, just to be safe.

I’ve packed my overnight, rolling suitcase (a great gift from my sister for my birthday last spring) as sparingly as possible. But still, it is heavy to schlep up and down stairs when there is no escalator or ramp, and my right wrist is tired from pulling it around Midtown. I’ve worn my favorite, most comfortable shoes. But my feet are wearing out.

And I’ve made many strategic trips to the bathroom. I really, really don’t want to get stuck in the subway or walking long city blocks, suddenly needing to go.

Chess Players NYCI’ve tried to balance all of these logistics, all the physical strain of travel, all the concentration and participation in hours of meetings, with some moments of pure pleasure. If I push too hard without pausing, I feel spacey and sometimes even woozy. This is incredibly frustrating. But my body just has limits. And there is wisdom in honoring that.

So this trip, I squeezed in a brief tour of the Rubin Museum of Art, a little gem on West 17th Street that contains stunning art of the Himalayas and surrounding regions. As I strolled through the galleries, serene Buddhas offered a moment of peaceful reflection, and my breathing eased.

Snapping photos on my iPhone between appointments also provided a good way to stop, slow down and pay attention to local color—chess players in Union Square and a farmer’s market, the slice-of-pie silhouette of the Flatiron Building and my beloved, iconic Empire State Building.

I got so immersed in taking photos, in fact, walking uptown toward Penn Station, that I arrived with only 15 minutes to make one more pit stop and pick up a sandwich and drink for supper on the train, before boarding. Or so I thought.

Empire State BuildingStanding here, watching, waiting. It’s nearly 7:30 p.m. before the voice on the loud speaker announces that the Northeast Regional is leaving on Track 8W. I hustle with my rolling bag to the gate. Settling into my seat in the Quiet Car (no cell phones or loud conversations—would someone please tell the young lady a few seats back to read the sign?), I’m relieved to finally be on my way home

As our train emerges from the Penn Station tunnels, I pause from the follow-up email I’m writing to savor the view—the New York City skyline, sparkling like diamonds and rubies against the black night. My hands feel fine.

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.

Surfacing

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At the inside crease in the first joint of my right middle finger, a charcoal gray chip of calcium is working its way to the surface. This has been going on for months. But now the tip of the chip is visible, and if I try to budge it, the sharp edges pinch.

So I need to wait it out. Kind of like a tiny submarine that isn’t quite ready to emerge. If only it contained miniaturized scientists, à la Fantastic Voyage, on a mission to repair my immune system.

I’ve discovered over decades of managing calcinosis that it’s better to let nature take its course than try to pry these odd calcium stones from my fingers. For one thing, I can’t really grasp a pair of tweezers tightly enough to dig them out. For another, it really hurts to do this. And disturbing the skin increases the risk of infection. So I use a combination of Aquafor and antibiotic ointments, dressings and bandages to soak them out, gradually.

Most of the time, this works. Once, several years ago, I had to have a clump of calcium surgically removed from my left thumb because it was too painful and wouldn’t come out on its own. Turned out it was attached to bone. But that’s been the exception.

Patience. It takes a lot of patience to let your body heal itself. For scleroderma, there are no quick fixes or easy cures. And there are many aspects of this disease that won’t heal unaided, if at all.

But one of the things that continually amazes me is how my skin, abnormal as it is, still knows how to heal itself. It just has a much longer timetable than normal.

Many of my finger ulcers take months to heal; some have taken years. Some of them form because of hidden calcium deposits that begin to surface; others, at pressure points. And yet, they do eventually heal. Sometimes the skin grows back thicker and sometimes it retains flexibility. The ulcers may reopen, but at least for a while I’ll get a respite.

This week, I was surprised and very pleased to realize that two intransigent ulcers finally closed up—in fall, of all seasons. So I’m down to three bandaged fingers from five. This is a major improvement.

Whenever a piece of calcium finally pops out, I’ll roll it around between my fingertips, just to explore it. How does my body make these strange, pointy crystals? Some can be as large as an eighth of an inch in diameter and leave a small crater in my finger.

But once I’ve cleaned out the hole with peroxide and dabbed on antibacterial ointment and clean dressing, within 24 hours, my skin has begun to repair itself and filled in. It’s really quite remarkable. For all the strangeness of this disease, my skin cells still can repair some of the damage. This is comforting.

Of course, nature can use a bit of help. I take medications to improve my skin circulation, which is critical to healing. I’m vigilant and meticulous about skin care to minimize risk of infection. I change my bandages every morning and use ointment, moisturizer and white cotton gloves at night to aide the healing process.

I also try to be mindful of how I move my hands and grasp things so I don’t bang myself. I take extra precautions, like wearing cotton work gloves when cleaning or moving cumbersome objects, to protect my bandages and skin. And I dress carefully, often in layers, to keep my hands warm.

All of this takes patience, too. After 30-plus years of living with scleroderma, I’ve adapted to the rhythm of my body’s long healing process. Some days, I’m far less patient and rant. But as long as I’m not in any significant pain, I’m able to ride out the frustration and regain my inner balance.

Today, checking the calcium chip’s long journey outward, I’m just glad it’s located in a spot that’s mostly out of the way. Maybe in a month or so, it will slip free and my skin will heal over, once again. Until the next time.

Photo Credit: Derek Lyons via Compfight cc

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.

Under Construction

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For more than a year, I’ve been working on perfecting a pants pattern. The goal is to create a properly fitted master pattern that I can sew in different fabric any time I need a new pair of pants—no more trying them on in stores, which I hate doing because it’s so difficult to find a pair that fits properly, is made of good quality fabric and is affordable.

I do some fitting and sewing, then I stop for months, then I pick up the project again and work on it some more, then put it aside once again. I made one pair of pants from the pattern that didn’t fit quite right, went to a master seamstress for help refitting the pattern, got some more fabric to try it again, cut out all the pieces, then sat on the project for another stretch.

Here’s the reason I keep stopping and starting and dragging this out: My hands can’t sew the way I used to, and I’m afraid of messing up, so I avoid it.

I discovered sewing when I was about five years old. Someone, perhaps my mother, gave my sister and me matching sewing boxes; hers was white with purple trim and mine, white with blue. Each held a packet of needles, spools of different colored thread, a red tomato-shaped pin cushion, some pins and a pair of scissors.

I was in heaven. I began hand-sewing clothes for my Girl Scout Brownie doll, whose name was Shirley, out of old fabric scraps. Her fanciest outfit was an orange corduroy coat with uneven sleeves and a white button. Shirley didn’t seem to mind the amateur workmanship, though I was frustrated that the coat didn’t come out as I’d planned. But I kept on sewing.

As a teen, I learned to sew my own clothes by machine with guidance from a friend’s mother. My first effort was a robin’s-egg-blue jumper with a scoop neck and white braid trim. It had a 22-inch zipper in the back, which I tried to insert unsuccessfully seven times, after which my friend’s mother did it for me. This outfit I wore with a yellow print store-bought blouse at my junior high Girl Scout troop’s fashion show. A few years later, I sewed my senior prom dress out of a black rayon print and inserted a hand-picked zipper.

With practice, a lot of mistakes and some successes, I got better at sewing technique. When Al and I married, I wore a white satin and lace gown that I made myself. I hand-stitched nine yards of lace trim onto white tulle for the veil. When I finished, my fingers were very swollen. A few weeks later, I learned I might have scleroderma.

Though my hands continued to deteriorate, I was determined to keep sewing and made many outfits for my two daughters when they were young. But I have not sewn for myself nearly as much as I would have liked in the years since.

For one thing, I have a lot of fingertip ulcers swathed in cloth bandages, which makes it hard to feel the fabric and manipulate it. Even with a threading tool, I have trouble inserting thread into a needle. Pinning fabric and sewing by hand are very challenging. My hands get tired. I bang my knuckles on the edges of my machine when I’m not paying attention.

But I’m not willing to give up. I have a collection of adaptive tools—an ergonomic rotary cutter to relieve pressure on my wrists, bent-nose tweezers for gripping and pulling, a Y-shaped gadget that I can use instead of my fingers to maneuver fabric through my sewing machine, a 25-year-old Viking Husqvarna that has never failed me. I love paging through sewing magazines and handling fabric. I still design outfits in my head, a favorite pass-time since childhood.

So this Sunday, I pulled out the languishing pants pattern, already cut out of khaki cotton gabardine, sat myself down at the dining room table and began marking the pieces with white chalk to prepare them for construction. The first step involved sewing a fly-front zipper. It was really hard, requiring hand basting through some thick layers.

But I did it. Slowly. When I messed up, I removed the stitches with a seam ripper and did it over. And to my great surprise and pleasure, it came out as close to perfect as I could ever expect, even limited by a pair of hands that don’t always cooperate with my head.

I’ll keep plugging along. Who knows? Maybe this pair will actually fit right. And if not, I’ll just make more adjustments and try again, even if it takes me another year to finish.

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.

Transitions

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I made a cup of hot tea this morning. A few weeks ago, in the midst of July heat waves, this would have been unthinkable. But this morning it’s only in the ‘60s. August, yes. But this is New England.

I know, I know. If you don’t like the weather here, just wait a few minutes. It’s supposed to be a great week, mostly sunny, in the low ‘80s. Today is just a blip.

But my hands went painfully numb after I ate breakfast, my usual, Grapenuts with Lactaid and fresh fruit, orange juice. Everything was just too cold.

I’m not ready for this, not yet. Over the weekend, while taking a walk, I noticed a few leaves had fallen, harbingers of autumn. Six weeks past the summer solstice, and already the sugar maples on our street are beginning to sense the lessening span of daylight.

Back to layers—sweatpants, a short-sleeved sweater, a light sweater pullover, my fleece wrist warmers, socks, shoes. No doubt everyone else is in shirt-sleeves, shorts and sandals. I long ago learned that I have no choice but to accept the fact that I have to deal with my own broken internal thermostat, but the early signs of summer’s inevitable departure always get to me.

It’s a month for transitioning. In 10 days, Mindi will return from Israel after two years living and working in Tel Aviv, to begin graduate school back in the States. Though we’ve stayed in touch via electronic media, I haven’t seen her for a year. Until I can give her a big hug, I won’t believe that she’s finally home.

And this weekend, Emily returns from her live-in summer internship, soon to leave again for her senior year of college. Already, she’s taking the GREs, planning her grad school applications. How did this happen, so soon?

For the first time in four years, we will have both daughters home at the same time, both preparing for the fall semester. Sure to be a whirlwind of intensity, but I am looking forward to us all being together again, even for just two weeks.

Al and I still have a little vacation time planned for August, a few more days to get away from work and responsibilities before everyone gets home. A few more days to linger and relax in the warm afternoons yet to come.

The tea worked. My hands have returned to a comfortable level of blood circulation. Maybe I’ll be able to shed at least one sweater by afternoon. It’s sunny. The trees outside my window are a lush, deep green.

Hang on, summer. Hang on.

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.

Vacation State of Mind

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It was blazing hot last week here in Massachusetts—‘90s and high humidity—too hot, even for me, once again this summer. On the plus side, however, we were also on vacation, hanging out at home and doing day trips. Perfect weather for the beach.

Only one problem: I can’t swim in the ocean with ulcers on my fingers. Too much risk of infection. So we just spent one day, last Monday, a real scorcher, at the seashore. The water was wonderfully warm, and I was able to wade up to my thighs, the next best thing to swimming.

For the rest of the week, we escaped the heat and humidity by playing tourist in our own backyard and immersing ourselves in history—from dinosaur bones to the Dead Sea Scrolls, from Emily Dickinson’s reclusive world to whaling ship lore.

One evening, we watched a classic 1921 Swedish silent film, The Phantom Carriage, with live piano accompaniment. Two other nights, we enjoyed free outdoor concerts. We met Al’s infant grand-niece and took her and her parents on a Swan Boat ride in the Boston Public Garden. Later that evening, we paid respects to the site of the Boston Marathon bombing.

On our last day, Sunday, the humidity finally broke, and we headed out to Plimoth Plantation, a recreation of 17th Century life among the native Wampanoags and English settlers who arrived on the Mayflower.

Here we met Phillip, a Wampanoag descendant and interpreter, who wore his hair half-shaved, half braided, as his ancestors did, to avoid entanglement with a drawn bow. He explained all the ways the Wampanoags made use of nature’s bounty to thrive along the Massachusetts coast—building bark longhouses that provided ample heat and comfort throughout the winter, constructing summer huts from reeds that swelled with moisture to become rainproof, planting beans next to corn so the tendrils would curl up the stalks, shading the roots with squash leaves and blossoms that minimized weed growth. There were game and fish aplenty in the forests, rivers and sea. “We had everything we needed,” he said.

In the nearby English community, we chatted with interpreters who reenacted the lives of actual settlers. One young woman rocked in her dark thatched roof house, clothed in a long linen skirt and yellow vest, stitching a napkin’s hem, and told us how hard life was, how much she missed her old home in back in Surrey. The only good thing about coming here, she said, was the promise of owning land, something her husband, a cooper, could never have dreamed of back in England. When asked why they did not call themselves Pilgrims, she explained, “Pilgrims are people who travel a long way to a holy land. This is far from a holy place. It’s but a wilderness.”

Same land. Two diametrically opposed world views. I couldn’t have asked for a better example of how mind-set shapes experience.

So here I sit, typing on my laptop, inching back into my normal routine, pondering. Vacation, we discovered this year, is a state of mind. You don’t have to travel far to find it. And (I am certainly not the first to observe), how we frame our experiences defines every encounter. It’s all too easy to lapse into longing for what you lack in the midst of all the plenty you have yet to recognize. The best respite from struggle is gratitude.

The trick is to maintain that vacation awareness—that ability to step back from daily demands and clutter, to pause and truly see—in order to appreciate and make the most of what’s right here, right now.

I’ll keep trying.

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.