Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

What Works for Me

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Every case of scleroderma is different. But after nearly 30 years with this disease, I’ve learned a thing or two about how to manage. So here are some basic suggestions that I hope will make life easier for you or someone you love with scleroderma:

Get the Best Medical Care You Can Find
This probably goes without saying, but it’s the single most important step you need to take to deal with this incredibly complex disease. If at all possible, find a medical center that specializes in scleroderma, even if you have to travel for occasional visits. Both the Scleroderma Foundation and Scleroderma Research Foundation can help you locate the nearest scleroderma specialists.

I’m blessed to live within an hour’s drive of Boston Medical Center, where not only the Rheumatology Department has extensive expertise in the disease, but also many other specialists do, as well. It really helps to have a cardiologist or dermatologist or nephrologist who also knows scleroderma, and you don’t find that unless you’re seeing physicians at a center where there’s a critical mass of scleroderma patients.

Get Enough Sleep
We’re all too busy. We all try to pack too much into each day. Especially if you’re juggling work and family and volunteering and aging parents and all the rest, it’s hard to get the sleep you need, even when you’re healthy. With scleroderma, you need to get sleep. Without it, you’ll get sicker. End of discussion.

Dress in Layers, Favoring Natural Fibers
When you need to keep warm, layers are the best way to go, especially if you’re moving in and out of spaces that vary in temperature. Cotton, wool and silk are my favored fabrics for warmth. Years ago, when I was first struggling with Raynaud’s, my rheumatologist told me that synthetics like polyester trap moisture and can make you chillier, whereas natural fibers wick away moisture and allow your skin to breathe. He was right. This is also the reason I wear shoes made of leather or natural fibers. Anything plastic or rubber causes a lot of perspiration and can lead to skin breakdown.

A lot of heat is lost through your head. That’s why, back in the day, people wore nightcaps (not the alcoholic variety) to stay warm in unheated bedrooms. Especially here in the Northeast, hats are a must in winter. I like wearing scarves made of natural fibers, for reasons cited above and because they make a nice fashion statement while keeping me comfortable.

Protect Your Hands
Okay, this is obvious. Here’s what I do:

  • Use disposable latex gloves for all cooking to keep bacteria out of my fingertip ulcers.
  • Wash my hands frequently with anti-bacterial gel. I have to do this to avoid getting my bandages wet. I checked this with my Infectious Disease doc and he said it was fine, contrary to all the hoo-hah about too much anti-bacterial soap causing germs to flourish. When I wash my bare ulcers, I use Aveeno Ultra-Calming Foaming Cleanser. It never, ever stings and is easy to wash off.
  • Use soft, flexible fabric bandages for finger ulcers. These can be hard to find, as many generic fabric bandages now include antibiotic ointment in the pads, which I don’t like. I favor Coverlet Adhesive Dressing Strips, with one caveat—the adhesive is very sticky, and you have to really soak the bandages before removing so as not to tear your skin. These are available online, not in stores. Aquafor Ointment is an excellent dressing. I also use small squares of Sorbsan, a surgical dressing made of seaweed, as a moisture barrier. And I change my ulcer dressings twice a day. Yes, it’s expensive. But not as expensive as getting an infection.
  • Wear wrist warmers. I like Wristies® fleece warmers, but there are now many alternatives on the market. I use these throughout the year, to keep warm in the winter and protect against air conditioning in the summer, and as an alternative to gloves during transitional seasons. They’re very affordable, come in many colors and several lengths, and there are even Wristies with a little pocket for a hand heat pack.
  • Wear natural fiber gloves and use mittens for best warmth. I have a very well-worn pair of leather gloves that are soft and provide ample room for my many bandages, as well as a good pair of down mittens for winter.

Get Regular Exercise
I let this go for a long time. Big mistake. You lose range of motion if you don’t move. One of my rheumatologists gave me the excellent advice to find some form of exercise I really love, because I’ll be able to stick with it. So I’ve been doing Pilates for several years, now, and also a variety of forms of dance—all beginner classes, and I’m a klutz, but it doesn’t matter, because I always feel so much better afterwards, and I’m even regaining a little grace, despite stiff joints. Yes, it’s hard to exercise when you’re in the active stages of scleroderma and so tired all the time. But even walking a short distance in fresh air is better than sitting still in your home, and it’s also good for your soul.

Surround Yourself with People Who Support You 
Many people don’t understand what you’re going through and will offer a lot of well-meaning but useless advice. Others will treat you like an invalid. Avoid them. Find those who will give you hugs when you need it, listen to your angst without criticism or commentary, remind you of your strengths when you’re at a loss, and most of all, who will accept you for who you are, no matter what. This is essential.

There’s much more I could say here, but I’ll save it for future posts. I’d love to hear what’s worked for you, too.

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.

Don’t Do Anything Stupid

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It’s Sunday morning, overcast, nippy. I’m up at 6:00, most definitely not my favorite time to rise. But today’s the day that Al is running a 5K obstacle course race with his hospital co-workers at a track out in Western Massachusetts, and we need to be there by 8:30.

Al informed me about this a few months ago when he and his fellow social workers decided this would be a great team building activity, plus a good way to raise some money for a local charity, while they were at it. I didn’t give it much thought. As a marketing director, for years I would take my staff out to all kinds of unusual places—the Arnold Arboretum, a glass-blowing studio, a youth concert by the Boston Symphony—to strengthen us as a collaborative working group. So the basic idea sounded fine to me.

That is, until Emily came home for the summer from college and looked at the race track website. “Mom, have you seen what he’s supposed to do?” she asked, incredulous. I had to admit that I hadn’t bothered to look. I was in denial. But the man is going to be 62 at the end of October. He has a pacemaker. We agreed that she would urge him to do more than his usual morning workout to get in shape. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. Al started swimming after work. Emily went back to school in early August.

A few weeks later, Mindi came home from Israel for a month’s visit. “Mom, have you seen what he’s supposed to do?” she asked, after checking out the website. We agreed that she would push the pace when they hiked up Mt. Monadnock that week. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. They made it to the top of the mountain in good time. Al started running after work, and Mindi went back to Tel Aviv in mid-September.

The week before the race, he was running a full 5K around our neighborhood without stopping. I’d resigned myself to the fact that he was going to go through with it and that the weather forecast was crummy—chilly, with a chance of showers.

We’d discussed the possibility of my staying home, because we were both concerned I would get numb waiting for him to finish. So I decided to find a Starbucks nearest to the racetrack, in case it was raining or too cold for me to stand outside for hours. I finally checked out the website to get the address. And freaked out.

This was no ordinary obstacle course. You had to crawl in muddy water under strings of barbed wire. You had to hop from pylon to pylon over more muddy water. You had to squirm through dark, wet tunnels. You had to run up and down mucky terrain. You had to jump over a fire pit.

When Al came home Friday night, I said we needed to talk. We sat in the living room and I let loose.

“Have you looked at the 5-week training program they have on the website? This isn’t just about running. It’s cross-training! If I’ d realized what this was all about when the girls warned me, I would have tried to talk you out of it. You could really get hurt!”

Al said nothing. After nearly 28 years of marriage, he knew enough not to interrupt me when I was on a tear.

“I don’t care how cold or rainy it’s going to be on Sunday, I’m definitely coming with you. What if you sprain an ankle? What if you break a leg? What if you get a concussion, I thought. What if you have a heart attack? How will you get home?”

He kept listening, his face frozen in a tight grimace.

“I know how important it is for you to do this, I get it that you want to prove to yourself you can, and I know you’d never listen to me if I tried to talk you out of it. So I want to support you, but you have to promise me you will skip any of the obstacles that you can’t do. Don’t be a macho hero!”

“I won’t do anything stupid.”

“Okay, but what does that really mean?”

“It means I won’t do anything stupid!”

We went back and forth for a few more minutes. Al suggested that maybe I should stay home, because it was going to be too cold for me. No way.

“If you’re going to be stupid enough to do this, than I’m going to stupid enough to stand there in the rain and watch you and make sure you get home okay!” He agreed. Truce.

*       *      *

I take on the elements dressed in jeans and an old short-sleeved cashmere turtleneck, under an old long-sleeve cashmere v-neck, under a fleece vest, under my mid-weight down winter coat. I am armed with my fleece wrist warmers, gloves and a hat, and I have my umbrella. I look ridiculous, but I don’t care. I can’t take a chance on my Raynaud’s triggering for the next three hours.

As we drive out on the Mass Pike, the cloud cover is lifting. There are even a few patches of blue over Berkshire foothills spackled crimson and gold.

At the track, we find Al’s co-workers—three trim women, all at least half his age. Everyone‘s in high spirits as they don their purple tees with the hospital logo and their names on the back. A couple of athletic-looking boyfriends join the team, too.

Music pumps from two huge speakers. Other running teams sport everything from multi-colored unitards to chartreuse tutus, from Batman and Wonder Woman costumes to princess tiaras and centurion helmets.

To get to the starting gate for their 10:30 race, everyone has to climb over a four-foot-high plywood barrier. Al tells me later that he thinks the guys ahead of him are just showing off when they jump the wall. Then he realizes he actually has to get over the thing.

Smoke fills the air beyond the starting gate. An announcer juices the crowd. A siren blasts. And they’re off.

I find my way to a good vantage point midway through the course, a spaghetti-like dirt trail that winds up and down, back and forth through the muck. And wait. After about 20 minutes, I catch sight of part of the team running up the far side of the track. But no Al. A few more minutes pass. Then I see him, trudging slowly up the incline behind his young, spry supervisor. She pauses until he catches up. Okay, she’s making sure he’s doing all right. Good. I snap some pictures.

After another ten minutes or so, the team reaches the muddy sinkhole in front of me. I yell encouragement and snap some more shots. Al pumps his fist in the air as he wades through the guck. He looks exhausted, but he seems to be having a good time. I click away as they all hold hands down the giant slide into a mud hole, as they roll over red-and-white poles laid across muddy water, as they slog up and down.

When I can’t see them anymore, I head to what I think is the final obstacle, a huge pit of muddy water before a steep, gloppy incline. The sun comes out. I unzip my coat and vest and put on my sunglasses. Guys do cannon balls, flips, belly flops. Most of the gals just jump and wade through. One woman in a tutu drags herself to the side with an injured leg and is quickly picked up by the paramedic crew. But no Al and company. I keep watching and waiting.

Suddenly, there’s a hand on my shoulder. It’s Al, grimy and smiling. “We’ve been looking all over for you! We finished a while ago!” Oh no, how could I miss it! They crossed the finish line together, holding hands, he tells me. We head back over so I can take his triumphant portrait.

Al is ecstatic. “I really did it!” he beams. He gets his free beer and we grab some veggie burgers. We say our goodbyes and head to the car. On the way home, he tells me more about the obstacles. He did every one, except the pylons. Too much. So, he kept his promise.

“It was hard,” he admits as we drive back east on the Pike. “But the anticipation was worse than the actual race.” I agree. You never know what you’re capable of, even when your body doesn’t work so well anymore. Unless you try.

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.

24

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Twenty-four years ago yesterday, I was sitting with my 91-year-old Grandma Elli on her upstairs front porch in Cincinnati, overlooking a tree full of ripe apples. It was the Shabbat before Rosh Hashanah, and we were talking about life. I didn’t know this would be the last time I’d see her before she would die that December of congestive heart failure. And I didn’t know that back in Massachusetts, a fair-haired baby girl with big blue eyes had just arrived, a baby who would transform our world.

Al and I had been trying to adopt an infant for nearly eight months. The previous April, a year-and-a-half earlier, we had proudly announced to our family around the Passover seder table that I was about six weeks pregnant. Within days I began to bleed and had a miscarriage. It took weeks to get over the loss, but I was determined to keep trying.

Over the summer, however, I began to experience a weird sensation in my wrists, like a rubber band stretching whenever I flexed. My rheumatologist called it a friction rub and told me we needed to stop trying to get pregnant. He was concerned that my scleroderma, suspected but not yet confirmed, was getting worse and that I was at risk of kidney failure in the third trimester. I trusted him, but I didn’t want to believe him.

We decided I should get a second opinion. I went to the University of Pittsburgh Medical Center to see a scleroderma expert. She was compassionate but forthright—I was on a dangerous trajectory with scleroderma and needed to go on medication that would cause birth defects if I got pregnant. I came home scared and distraught. But there was no other rational choice except to take the best shot at saving my health.

The High Holidays came and went. Al found me a fuzzy black puppy with a white star on her forehead and white sock paws. We named her Sukki, and she gave me comfort. But I was still depressed by the progress of my disease, which was crippling my hands and causing much fatigue.

One evening that winter, while I was lying on the living room couch, staring at the wallpaper, Al sat down next to me. We should try to adopt, he said. I wasn’t sure. I didn’t know what would be involved. How could we afford it? How would we find a baby? How long would it take? Would I be able to handle being a mother with my scleroderma? I felt like my body was failing me in so many ways, and I was terrified.

In my gut, though, I knew he was right. We began the adoption process shortly after, on Tu B’Shvat, the Jewish New Year of the Trees. Months passed with no leads. When Passover came around again, six months after I’d begun my prescribed course of D-penicillamine, I noticed that creases in my forehead had reappeared. I joked that I was the only 34-year-old woman in the world who was happy to have wrinkles.

Every night and every morning, I’d pray for a baby who needed us as much as we needed her or him. Summer came and went. After my return from Cincinnati, on the High Holidays, we both prayed with all our hearts for a child.

The day after Yom Kippur, a Thursday, I was getting supper ready when the phone rang. It was our social worker calling to tell us that he had found us a baby girl. As I hung up the phone with trembling hands, I heard Al’s car in the drive. I raced out in stocking feet to tell him the news.

The next four days were a blur of friends bringing over everything we could possibly need for our new baby. A crib materialized and a dresser, a changing box, clothing, toys, books, even a potty chair. Al and I took Sukki for a hike in the woods over the weekend and were so excited that we got lost, found our way to a road and hitched a ride from a kind passerby several miles back to our car.

Sixteen-days-old, Mindi arrived in a hand-knit pink sweater and bonnet that Monday, the first day of Sukkot—a festival of ancient harvests and lessons about God’s constancy in our transient existence. The pizza’s in the car, our social worker quipped as we answered the door.

And there she was, our beautiful, mysterious baby girl. We cuddled her and fed her, changed her diaper and laid her down for a nap in our friends’ borrowed white cradle. Al and I looked at each other as she slept and wondered, Is that all she does?

Little did we know.

Among the many things we have learned from Mindi over the years, perhaps the most important is this: Every child, however she becomes yours, is a human being in her own right, not a mini-Me. And this: Adoption is a challenging course. Along with the profound joy of creating a family, it brings the heartache of deep loss and an intense struggle for identity.

I have told Mindi that I am a much better parent because of her. She has forced me to stretch beyond experience, to question and discard pat answers to parenting. Always one step ahead of me, she has taught me to doubt snap judgment, take a step back and trust her to manage for herself.

Soon, she will be returning to her job and friends in Tel Aviv, with plans to come back to the States next fall for graduate school. On this anniversary of September 11, as the saber-rattling grows louder over Iran’s nuclear capacity, I’m trying not to worry. The world is a dangerous place, but we all have to let go of our adult children, ready or not, and believe in them and their ability to thrive on their own.

The Talmud teaches that parents must instruct their children how to swim. Bright, adventurous and resilient, Mindi is a strong swimmer. I’m grateful. I’m incredibly proud of her. And I’m going to miss her very much.

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.

Strong Bodies

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Thighs like small boulders, wasp-waisted, she approaches the platform. The young Olympic athlete dips her hands in resin, claps, strokes her chalked palms back and forth over the steel barbell weighing 94 kilos—207 pounds—shifts from one foot to the next, then back again. The horn blasts. She clenches her jaw, squats, yanks the barbell up to her shoulders, strains to stand. But the weight is too heavy. She dumps it, thud, leaves the podium, head low.

She returns a second time, still cannot make the clean and jerk. Her coach drapes a jacket over her slumped shoulders. Other women in her weight class, with equally muscular bodies, have hoisted the barbells high. But I feel for her. I can barely imagine what it takes to grasp a weight that heavy and lift it even an inch off the ground, let alone heft it overhead.

The Olympics are contests of perfection. Swim and track meets are lost by hundredths of a second. Gymnasts fail by degrees of perpendicularity. Divers are dropped for splashing.

And yet. How extraordinary are those strong, perfect bodies. What amazing feats of stamina, coordination, speed and strength, even by those who never make the final eight. Whenever I watch the Olympics, especially the summer games, I’m always amazed—and a bit jealous. At no point in my life, healthy or not, was I athletic enough to entertain a glimmer of hope that I could be like that.

Or so I thought. Every year in high school gym class, dressed in our light blue bloomer jumpsuits, we would tumble and stumble through two weeks of gymnastics. It was always my favorite unit, though I was terrified of the beam (especially since we had to balance in sneakers, which, of course, made it impossible to feel or grip the narrow wooden span).

I loved the parallel bars, felt exhilarated when I could do a flip or a penny drop. I flew over the vault, throwing my legs cleanly across the padded horse and landing firmly. And I amazed my teachers and astonished myself when, one day, I shinnied all the way up one of the thick, scratchy ropes that dangled from the gym’s high ceiling and touched the top. Me, the shrimpy first chair violinist who was afraid of heights. I wrote it all off as a fluke.

Now physical challenges are so much harder. But I’m in better shape today, even with scleroderma, than I was 10 years ago. I take Pilates every Monday night and a dance class on most Thursdays, stretch each morning and walk Ginger in the afternoon. I want to look and feel my best as I age, and I don’t want to give in to my disease. The latter has proven to be a powerful motivation, more than vanity and my own drive for perfection.

I want to be strong. I know I need to be strong to fight scleroderma. Living with any chronic illness involves a willingness to accept limitations, but I keep pushing the envelope to find out which limitations are real and which are just obstacles of my own making.

Sometimes I wonder what my health would have been if I’d had that attitude back in high school and pushed harder to be athletic. If I hadn’t assumed I was a klutz. If I hadn’t bought into negative stereotypes of female jocks.

But it’s far too late for that, now. So I keep working out and take great pleasure and, yes, pride in discovering that my body still responds well to physical exercise. And I watch the summer Olympics, daydream what it would be like to be a competitor—and cheer for the losers who keep on 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.

What Did You Do to Your Hands?

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Scene One:
I’m buying a slice of pizza at a luncheonette across from Boston Medical Center before I drive back home from an appointment. As I fumble with my wallet, the middle-aged man behind the counter notices my five bandaged fingers.

“What did you do to yourself?” he asks.

“Oh, I get ulcers,” I say, giving my standard explanation.

“Does that hurt?”

“Sometimes, if they get infected.”

He nods and hands me my change.

 


Scene Two:
I’m taking my first Saori class to learn this fascinating Japanese weaving method that encourages free-form creativity and uses looms that accommodate people with disabilities. The young son of one of my new classmates comes up to greet me. He loves to run around and say a loud Hi to everyone when he’s not weaving wonderful fabric. I shake his hand, and he pulls back. Later, I offer him my hand again. My Raynaud’s has kicked in, and my palm is a mix of indigo and fuchsia from haphazard blood flow. He stares and says No, frowning and shaking his head as he steps away. I believe I’ve frightened him.

*   *   *

June is national Scleroderma Awareness Month. It’s the month for walkathons to raise money for research, ramped-up efforts to publicize scleroderma’s devastating impact and continued lobbying for NIH funding of scleroderma research to find a cure.

All of this is important, focused work. But I wonder. How do you really get anyone to care about one more way that our bodies fail us, unless they have a vested interest? This time of year, there’s a race or walkathon or bike-athon for some disease every weekend, every cause has its own colored ribbon symbol or rubbery message bracelet, and Congress is still gridlocked over cuts in domestic spending. Not to mention that nobody pays attention to anything in front of them any more, just the alternate reality of their smartphone universe.

As part of its awareness campaign this year, the Scleroderma Foundation has developed a social media strategy to encourage patients to share personal stories about scleroderma and to create a video story collage that they plan to send to Washington lawmakers in the fall. I hope it works. For me, the art of storytelling remains the most viable means of building awareness, a primal way we connect as humans. But it requires a willingness to speak up and a willingness to listen. Neither are easy to come by for a disease like scleroderma.

Before I started writing this blog in January, I had a very hard time talking about my disease. In fact, I’ve been silent about it, for the most part, except when sharing with very close friends and family, for the better part of three decades.

When asked that all-too-common question by curious cashiers (the people most likely to ask, it seems)—What did you do to your hands?—or its variants—Did you cut yourself while cooking? Did you prick your fingers with a sewing needle? Did you stick your hand in a lawnmower?—I used to demure and just say I have sores. Now I say I have ulcers, and if I think the person is genuinely interested, I’ll explain I have scleroderma.

Responses range from compassionate concern to flickering interest in freakishness—the latter, I think, veiling the true reaction so powerfully expressed by the young boy I met in my weaving class: my hands look really strange and scary.

This is the hard truth of scleroderma. It’s rare, it defies easy explanations and it’s disfiguring in a way that others find threatening to their own body image and sense of well being.

It’s hard to talk about. It’s hard to draw attention to yourself, or more attention to yourself, and say, hey, I have this weird disease that makes my hands look like claws and my face like a mask and has screwed up my lungs and digestion and God knows what else.

Honestly, I just want to be known for who I am, not for this disease I live with.

But what I’ve come to understand and am coming to embrace is that scleroderma is a part of who I am. There’s no getting around it. I have this fucking disease, and I’m stuck with it for life. Which is why I’ve begun, finally, to write about it, tell my stories and try to make some sense of it all.

I have no awareness agenda. I am aware, however, that it’s important to get past the shame and embarrassment of living with a disfiguring chronic illness and share this journey with others who want to understand. This blog is my medium for that message. And maybe the next time a stranger asks what I did to my hands, I’ll tell them my real story.

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.