Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Suit of Armor

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Our skin is our body’s largest organ. It protects innards, moderates temperature, enables sensation and serves as our first line of defense against infections. When healthy, it is amazingly flexible, soft, adaptable to however our muscles and fat change shape.

Skin is also vulnerable—to lacerations, blows, piercing, burns. To deal with life’s inevitable struggles, we are told to grow a tough hide, like a rhinoceros, or have a stiff upper lip.

For those with scleroderma, of course, these admonitions are ironic. There is nothing worse that having skin too stiff or tough to easily flex and move. You feel all the more vulnerable, not stronger, trapped in your own leather.

I was thinking of this as I walked through a new exhibit at the Worcester Art Museum on Sunday afternoon, “Knights!” Here are some exquisite examples of medieval plate armor and weapons, period paintings and sculpture, juxtaposed with a powerful photojournalism essay on guns and drug wars by the Pulitzer Center for Crisis Reporting. Commissioned for royalty, the suits of armor are intricately detailed. Designed to intimidate, the deadly weapons are engraved with oaths and flourishes.

Everything looks incredibly heavy. And it is. You can slip your hand into a gauntlet—an armored glove—and flex your grip. This takes some strength. The plates on the back of the leather fingers feel like a row of linked flatware.

Viewing all the pikes, spears, two-handed swords, poleaxes, sabers and other weapons designed to pierce, crush and dismember, I can understand why knights wanted to sheathe their bodies in heavy metal. But I wonder what good it did them in the heat of battle.

How could they maneuver in all that steel, iron and brass? The suit of armor, alone, weighed about 50 pounds. This they wore over padded woolen or linen undergarments that absorbed sweat. Then they still had to carry all their battle axes and swords. If they fell off their armored horses, I can’t imagine how they would have been able to get up easily or regain balance or run and fight in the midst of all the carnage. It would have been like being trapped in a steel can.

But at least they had a choice. At the end of a won battle or joust or court appearance, the knights of old could take off their armor and stretch and flex again.

Not so with scleroderma. We can’t peel off our toughened, leathery hides. We have to learn to live within that abnormal skin. Sometimes, as has been my good fortune, thickened skin softens again with years and serendipitous treatment, though it never fully returns to normal. Too often, it doesn’t.

There is a battle to be won, here. But it is less a battle with the outside world—although learning to maneuver and manipulate and manage pain and protect your damaged hands and limbs is a significant undertaking—than an inner struggle to maintain your sense of self and self-worth.

Scleroderma may entrap our bodies. But it cannot steal our souls. For all of you who struggle daily with this disease, I hope, no matter how stiff your joints, how achy and itchy and pained your too-tight skin, or how exhausted you feel as you read this, that you cherish your uniqueness and let your spirit soar free.

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.

Hair Wars

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In the Department of Little Nuisances, I find myself in an ongoing battle with stray hairs. This may seem ridiculous to report, but it’s one of the odd things about dealing with personal hygiene that comes along with my experience of scleroderma.

To wit, every day or so, one or more stray hairs drops from my scalp onto my face. I can feel it on my skin, but I have a devil of a time removing it with my fingers. In part, this has to do with the fact that many of my fingertips, at present, are swathed in bandages for digital ulcers, so I can’t actually sense the hair with my fingers. It also has to do with the fact that my fingertip sensitivity has declined over years of Raynaud’s, ulcers and nerve damage, so even with exposed fingers, I can’t always feel the thing.

Very annoying. And frustrating. Especially if the hair has fallen on my lips, but I can’t successfully blow it out of the way. I’ll end up wiping my face with my hands or wrists to get rid of the strand, only to have it stick to my clothes, where I can’t pick it off, either.

On days when I have a sense of humor, the whole bit feels like one of those old-fashioned slapstick comedy routines with fly paper, when no matter which way the actor moves, he gets more and more tangled up in himself. I’m imagining Buster Keaton.

But lately, this is just plain annoying, probably because the air is so dry from cold wintery temperatures and my clothes crackle with static electricity. I try to keep a lint roller handy, but the problem with lint rollers is that it’s hard to peel off the dirty layer—just another reminder of my fingertips’ inadequate pincer capability.

While I’m on a roll, here, the other issue with stray hairs involves my bandages. No matter how good a job I do every day to neatly wrap my fingers in clean dressings, within minutes, some hair from somewhere gets stuck to the edge of adhesive and becomes impossible to remove. Often, I have to resort to scissors to nip off the offending hair strand.

Now, admittedly, when dealing with a disease as complicated as scleroderma, this is a pretty minor issue. It’s not life threatening. It doesn’t keep me from doing what I need to do or love to do each day. One way or another, I manage to groom myself and not walk out of the house with a lot of stray hairs hanging all over the place.

But my hair wars are a constant, niggling reminder that there are a lot of things, even the most simple things, that this disease makes ridiculously complicated.

Our skin, the largest organ in our bodies, is an amazingly facile interface with the surrounding world—protector against infection, moderator of temperature, sensor of stimuli, transmitter of information to our brains. When our skin is damaged by scleroderma, our ways of perceiving and interacting with the world change permanently.

No easy solutions to all this. Patience, persistence, creative problem solving and a sense of humor are the best tools, I’ve found. But some days, I still get really annoyed about it all. And that’s okay, too. Anger has its place in dealing with chronic illness, as long as you don’t take it out on someone else or yourself. So I share this rant with you, dear reader, in hopes that you find a constructive way to vent your own frustrations about picayune problems of disease management. More power to us all.

And if you’re having a bad day, here’s Buster Keaton in The General, to give you a lift!

Video Credit: Internet Archive

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

Milestone

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It’s maybe seven years ago, February, midday. The pea-soup-green classroom, a science lab of some sort, is packed with second year medical students. They fill every seat behind the rows of black benches and crowd onto window ledges in the back.

I sit before them on a metal stool, dressed in my favorite red wool pencil skirt, a black and beige tweed jacket, black cashmere sweater and rainbow scarf, stockings, black pumps. I want to look my best, not like a suffering patient with scleroderma.

I have come here, to Boston Medical School, to help would-be physicians learn about this rare and complicated disease, at the request of my rheumatologist’s research fellow. I’ve helped out several years in a row, so I know the drill: The fellow asks questions and I describe my symptoms. Then the students have to figure out which auto-immune disease I’m describing—rheumatoid arthritis, lupus or scleroderma.

I summarize the disease’s onset—fatigue, puffy fingers, fleeting joint pain in my late ‘20s; pleurisy, thickened skin that migrated from my fingers to the backs of my hands halfway up my forearms in my early ‘30s, facial skin tightening that made it uncomfortable to blink, problems swallowing. I tick off more details. Severe Raynaud’s. Calcium deposits, digital ulcers and infections. Friction rubs in my wrists. A miscarriage at 6 weeks. Pre-eclampsia and premature birth of my younger daughter.

The skin tightening, of course, is the giveaway, and several suggest the correct diagnosis of scleroderma—to be specific, limited systemic sclerosis, explains the fellow. Then it’s time for the med students to ask their own questions.

I am always surprised by how tentative they are. I’m one of the first real patients they have met in their medical training, and they stick to the technical details, nothing really personal. Do I get short of breath when I go up stairs? (Sometimes.) What triggers numbness in my hands? (Cold weather, but also a change in relative temperature, like going from 80 degrees outside to 72 degrees inside with air conditioning.) Have I experienced any skin changes on my torso? (No. That’s a sign of diffuse systemic sclerosis, which tends to be much more severe. My skin has actually loosened somewhat with time, thanks to medications, excellent health care and good luck.)

Our session flies by. At the end, I let the students feel the backs of my hands. Their fingers flutter over my skin like butterflies. They are most appreciative. I leave with a sense of accomplishment, that scleroderma will no longer be just another diagnosis to memorize from their textbooks, but something tangible. Maybe, just maybe, after they’ve completed their training, one of these young physicians will be able to diagnose this disease early on and save her patient at least some irreversible harm.

I am also exhausted. There is something about sitting in front of that group, good as it is to teach, that makes me feel like a bug under a microscope. The discussion among the students and the fellow, as they explore my symptoms, is both theoretical and specific. I am reminded of all the scary things that could go wrong—kidney failure, interstitial lung disease, pulmonary hypertension, GI problems, heart issues, on and on.

I understand this discussion—it’s a necessary piece of the students’ medical education. But it depresses and angers me, too. I am not a litany of symptoms and would-be symptoms. I’m a whole woman who has been living with this disease for far too long.

That’s why I dress up. I want to make it clear to the students that I am much more than my scleroderma. Yes, it affects every aspect of my life. But it does not define me.

This is my 100th blog post. Though I haven’t taught second year med students about scleroderma in a long time, I have chosen to share my life with this disease in the blogosphere for some of the same reasons. I want to educate—about not only what it means to live with scleroderma, but also what it means to live with chronic illness.

The more I have written over nearly two years, the more I find myself wanting to share what I’m learning about living fully. We are a society obsessed with categorizing, labeling, one-upping. Health, wealth and beauty guarantee high social status. Those qualities are compromised by chronic disease, especially scleroderma.

The older I get, the longer I beat the odds on this disease, the less I care about those status markers. What I value is my ability to make the most of each God-given day, to nurture loving relationships, to put my talents to good use. And that’s what I’ll be writing about more in the weeks and months ahead.

To all of you who have subscribed to this blog since Post #1 and stayed with me, my profound thanks for your support and continuing enthusiasm. To those who have joined along the way, I’m so glad you’re here.

Photo Credit: A.M. Kuchling 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.

Spilled Coins

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Quarter past ten. Why does it always take almost as much time to drive 50 miles from my home into Boston as it does to maneuver through local traffic and park for my rheumatology appointment?

I’ve driven round and round the garage, finally located a space on the sixth level. Heading toward the stairs, I notice the elevator has just arrived and decide to shave a few minutes. For some reason, I have it in my head that I’m late, when I’m actually, amazingly, early for a change.

A curly haired woman in capris steps into the elevator ahead of me. As the doors begin to close, another woman with a rolling briefcase runs, calling for us to wait. The first woman reaches her forearm to hold the door. “I’m not very good at this,” she apologizes. “But you did it!” says the third passenger.

When the curly haired woman steps toward the back of the elevator to make room, I notice her hands. They are frozen into fists, with scabs from ulcers on the back of each knuckle. Her face is smooth and tight, lips pulled into a grin. She carries her paper coffee cup in a pink rubbery sleeve with two handles that she can hook with each hand.

As familiar as I am with scleroderma, I’m startled. I don’t often meet a fellow traveller. I feel badly for her. Her hands seem so much worse than mine. I wonder if I should say something. But casually commenting, “So, I see you have scleroderma, too,” feels awkward. There’s no hiding this disease. We all want our privacy.

We both walk quickly across the street and into the medical center. She pauses to study the floor directory. I signal the elevator and am the first one in, this time. We exit at the same floor, with me a few steps ahead. We sign in for our appointments simultaneously. I overhear her saying that she is seeing the same rheumatologist. Her appointment is the one before mine.

As I open my wallet, a dozen coins spill onto the carpeting. Great. This is the price of leaving the coin compartment unzipped to save my fingers. The curly haired woman is the first on her knees to help me. She scoops up some quarters and dimes with her fists and places them on the counter before I can flip a few into my palm. “I often find using a piece of paper helps,” she says. I thank her, marveling at her speed.

We sit on opposite sides of the waiting room. She scrolls on her pink-encased smart phone. I type on my laptop. Our doctor is running late, as usual. I think how grateful I am that I can still type. I notice how adept she is at maneuvering objects with her two fists. I keep track of her turn, since mine will be next. She disappears into the warren of exam rooms.

When I finally see my doctor, an hour later than scheduled, we go over all my latest symptoms and difficulties. My ulcers have been particularly troublesome for the past few weeks, due, no doubt, to the odd extreme temperature changes of late. It’s frustrating, I tell him. They’re sore all the time. But, I add, there was this woman in the waiting room who had the appointment before me. Her hands were so much worse. What do I have to complain about?

It’s only a few days later, when I recall her comment about how a sheet of paper helps her to scoop up coins, that I realize she may well have thought the same of me and all my bandages.

This is a jarring disease. It disfigures and contorts the body. But it doesn’t straightjacket creativity, so essential for coping. My curly-haired counterpart has figured out how to scoop up coins with her fists. I have found the lightest touch keyboard so I can still write with my bandaged fingers. I wouldn’t trade my frustrating but familiar problems for hers, and I expect she would say the same of me. Maybe we’ll talk about it, next time our appointments coincide.

Photo Credit: uhuru1701 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.

Salt and Pepper

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Next month, I turn 59. I’ve reached the stage when I appreciate it if people think I’m younger. One of Emily’s college friends was recently surprised to find out I am not in my mid-40’s. This felt very good.

But twice this past week, I was mistaken as eligible for a senior price break—meaning 65 or older. Now, I’m sure the guy (both times about 30-something, must have guessed I was his mother’s age) thought he was doing me a favor. And both times, the guy made an assumption without asking.

At first, I thought it was just a fluke. The second time, I was really annoyed—insulted and perturbed. What is it about me that gives the impression I’m already a “senior”? (Of course, there is a corollary—if I look like a senior, that’s bad. More on this in a moment.)

The first time, while Al was out of town, I went to the movies by myself on a Saturday night to see director Michael Haneke’s award-winning Amour, a poignant, brutally frank portrait of an elderly Parisian couple whose cultured life unravels as the wife succumbs to a series of strokes. Maybe it was because I was going to a film about aging, maybe because I was alone, I don’t know, but the cashier automatically gave me the three dollar senior discount.

Initially I thought I somehow got a matinee price, which made no sense. Then I realized his mistake. Irked and a bit bemused, I decided to keep the discount. If he was going to size me up so inappropriately, I reasoned, I wasn’t about to shell out three more dollars to correct him.

I’d forgotten the incident by end of the week. Then, the same thing happened. I was at a national writer’s conference in Boston on Friday, having gotten there in a major snow storm and just made it to the registration booth in the cavernous Hynes Convention Center minutes before the first session was to begin. One of the conference staff guided me from the short queue to one of several empty stations. But this one was specifically for seniors. And this time, I spoke up loudly.

“I am not a senior citizen!”

“That’s okay,” he said, “it doesn’t matter.”

Well, it mattered to me. Much as I would have liked the steep discount in the admission price, there is no way I would have tried to finagle a lower fee, even if they hadn’t required proof.

Later, when Al picked me up from the train, I recounted my experience. He laughed.

“It’s not funny!” I protested. “This is when you’re supposed to tell me I don’t look a day over 30.”

“I was thinking you should have tried to get the discount,” he said, still smiling to himself.

I was not amused.

Several days later, I still feel the sting of mistaken identity. Scleroderma has aged me—fewer wrinkles in my forehead and around my eyes than most women in their late 50’s, but deep grooves around my mouth. Usually I’m no longer self-conscious about this, but the week’s events felt like a slap.

At the same time, I’m also questioning my angry reaction to the idea that I might look older than I am. It’s a cultural, ingrained bias: by definition, older women look ugly and undesirable. Not anything true. Ugly, of course, in our society, means diverging from youthful perfection. Which is why scleroderma is such a cruel disease for women, in particular.

But aging, in and of itself, is the natural order of life. And it brings its own kind of beauty. Yes, I’m trying to convince myself as I write, but I actually do believe this more and more, though it’s been hard to accept the physical transformation as my estrogen supply has dwindled.

I don’t dye my hair because I like the way my dark, dark brown is now shot through with silver—salt-and-pepper like both of my parents. I’m still fairly trim and spry for my age and, especially, my medical challenges. I dress as well as I am able. I’m mostly comfortable in my own skin, abnormal as it may be.

That level of self-acceptance is the true source of beauty. I’ve always admired older women who take care of themselves and radiate wisdom, compassion and clarity. It gives them an amazing inner glow. That’s my goal, in any case.

But I’m not fully in synch. Scleroderma has accelerated my biological clock, so my world experience hasn’t fully caught up with my body’s aging.

This is how I sum up my decades, so far:

In my twenties, I thought I had all the answers.

In my thirties, I realized I didn’t.

In my forties, I realized it didn’t matter.

In my fifties, I’ve been putting it all back together.

So my sixties should be great. Just don’t rush me.

Photo Credit: Portrait of an Unidentified Woman, Studio of Matthew Brady, c 1844-1860, Library of Congress PPOC

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.