Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Let There Be Light

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This time of year, around 7:30 in the morning, the sun paints a tipsy exclamation point on the wall above our bedroom radiator. It glimmers, stretches and slides on a downward slope away from the window, toward the radiator’s far corner, before vanishing within the hour. I welcome the annual arrival of this narrow shaft of light—a reminder that, even as the days are growing far too short, the winter solstice is barely a month away.

Sunbeam_bedroom_11-25-13I hang onto this promise. As soon as we switch the clocks back and it starts getting darker by 5:00 and then 4:30 and now 4:15, I feel as if everything constricts. It takes me nearly a week to get used to the relative time change. Then I start marking time until December 22—the first day of extra sunlight.

My other way of reassuring myself that winter’s heavy darkness will, eventually, lift once again is Hanukkah. The eight-day Jewish festival of lights, Hanukkah is celebrated by lighting one new candle each evening, just after nightfall. The candles are a reminder of miracles—how the Maccabees overthrew Syrian Greek rulers who had desecrated the Temple in Jerusalem, the Temple’s restoration and rededication, and how a single cruise of ceremonial oil burned in the Temple for eight days instead of just one.

Normally, Hanukkah falls midway in December, not far from Christmas, right around the shortest day of the year. With the addition of each new candle in our eight-branch hanukkiah, I feel the light returning.

This year, however, Hanukkah starts the night before Thanksgiving—an anomaly caused by the particulars of the solar-lunar Jewish calendar. This coincidence of holidays won’t occur again for another 70,000 years. That is, assuming humans are still around to mark the passage of time, the earth’s elliptical orbit around the sun and reasons to be grateful.

So what to make of the candlelight when I know the days are still getting shorter for the next few weeks? Delayed gratification? Reassurance that even as the temperatures here in New England have plummeted well below freezing at night, even though it’s still November and not yet January and I’m bundling up in layers and layers to stay warm, that the earth will soon reach its farthest distance from the sun and begin spinning closer once again?

Maybe I should focus on miracles. Gratitude generates its own candlepower. We have a warm house. I have enough warm clothes to deal with the weather and my Raynaud’s. When I switch on a light, electricity flows through wiring into an energy-efficient fluorescent bulb to brighten the room (even if it takes a few minutes). No horrible severe storms, yet, out our way. (Probably shouldn’t mention that one. Don’t want to jinx it.)

Then there’s the annual miracle of that narrow shaft of light each morning in our bedroom, November’s sunny greeting. Yes, it’s cold out, it seems to say. But the world keeps spinning. Gravity holds you firmly to the ground. There will be more sunlight soon. Minute by minute. Second by second. Stay the course.

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.

Under Wraps

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Ah, yes. It’s that time of year when it takes 20 minutes to bundle up and head out the door. Maybe not for everyone, but most certainly for me—all those snaps, zippers and the inevitable struggle to grasp the wrists of my sweater so the sleeves don’t bunch up inside my coat.

SnowsuitI’m already into my full-length down Eddie Bauer, gloves, a wool beret and scarf, sometimes even leg warmers. All this, of course, over two sweaters, warm pants and fleece wrist warmers—my go-to outfit for working at home, writing at my computer, which inevitably makes me cold even with the heat on, because I’m sitting still for so long.

Even if all those layers can sometimes feel like a mummy’s wrap, however, it’s nothing compared to the bulk I used to wear as a kid.

Remember snow pants? With skirts? In my elementary school, in the ‘60s, girls couldn’t wear pants to school. I had this water-resistant pair of red snow pants, with suspenders, that my mom would insist on me wearing over my plaid wool kilts to school—that, plus tights, of course, red rubber overshoe boots (the kind with the little elastic loop that you slipped over the rubber button to supposedly keep out the snow), a matching red parka with a hood and red wool mittens.

Those snow pants, practical as they were, made my skirt bunch up at the crotch. I hated wearing them to school. I would waddle out of the house to the bus stop. Getting dressed for recess was a big, long process—probably harder for the teacher than for us kids.

Playing in the snow at home was another matter. I loved to make snow men and snow angels in our front yard, and the snow pants were tolerable for those activities, mainly because I wore pants underneath.

For fall, I had a tan wool duffle coat with toggle buttons. No fancy light-weight, super breathable, heat-retaining fabrics back then. Most of the time, wool was sufficient.

Once, however, on a chilly late fall day, out on the playground, the wind kicked up. A couple of my little girlfriends and I huddled together and complained to the teacher in charge. “You’re just a bunch of sugar plums,” she teased. “It’s a beautiful, sunny day. Go and play.”

To which we responded by walking arm-in-arm within her earshot and chanting, “It’s cold, it’s freezing, it’s terrible!” We’d have been better off running around, but we had fun being miserable. Then we played hopscotch until the bell rang.

Some 50-plus years later, I’m still of both minds about the weather. There’s that part of me who absolutely hates the cold here in New England, all the layers and the numbness in my fingers and transitioning in and out of cold when I venture out for errands or appointments.

But there’s the other side, as well, who loves the four seasons, even snow, and views the challenge of dressing for my severe Raynaud’s as one more game to play. I may gripe, but ultimately, it’s all about finding the right clothes, giving myself enough time to get dressed and mastering layers. It also helps to have warm clothes that are comfortable and make me feel and look my best.

Certainly not snow pants.

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.

Carpe Diem

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A glorious weekend, indeed, this past. Leaves crinkle and swirl in honeyed showers as temperatures hover now in the upper thirties. But Saturday afternoon, hours before we turned back the clocks to usher in bare-branched November, the trees were still lush with mulled hues of cinnamon, ginger and burgundy, and the air was warm.

Al and I looked at each other. It was simply too beautiful to stay indoors. So we put on our hiking shoes and climbed into the car with Ginger, our aging Golden, whose reddish fur matched the day’s pumpkin glow. It was a bit of a scramble. Her haunches are arthritic, and she needed a boost to the back seat.

But once we arrived at our favorite hiking spot, about 20 minutes from home, Ginger was in her element. She’s 15, now, a centenarian in human years, but she can still trot along with us, up and down the gently sloping trails.

We took our time, pausing as I snapped pictures of milkweed pods—my childhood favorite for late autumn—and a slender sapling glowing gold in the midst of deep green pines. Ginger loped ahead to catch up with Al, then turned and waited to be sure I was still coming.

As we climbed a steep hill, she kept apace with Al. I brought up the rear. I’m slow at this, my breath shortened by lung scarring from my scleroderma. It always takes a while before my breathing can catch up with the exertion of walking up an incline. But as long as I pace myself, eventually my metabolism matches my intentions.

And there was so much to savor: cream-colored mushrooms large as saucers, a hillside aflame in scarlet shrubs, tree chunks carpeted in lime-green lichen. Deeper into the woods, all we could hear were Ginger’s panting and our feet scuffling through crisp leaves, interrupted by the occasional thrum of a private plane flying somewhere overhead. The air was fresh, sweet, enriched by decaying foliage.

We stopped by a bridge high over a brook, the water low from lack of rain, but still burbling. Ginger wandered back and forth, then patiently waited as we pulled tufts of loose fur from her hips. “You okay?” I kept asking her, once we moved on, as she trotted back to check on me.

Rounding through the wildflower meadow near the trail head, Al stopped to crack open a dried milkweed pod and strew its glinting silk to the light breeze, ensuring a good crop for another visit. Late afternoon sun illumined leaves like stained glass.

My knees gave out just as we walked down the road to the car. Perfect timing. Ginger clambered into the back seat with some help and lay down, panting, with a Golden’s grin.

“I’m so glad we decided to go,” I said to Al. He smiled and nodded, then drove us home.

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.

It’s Not Over ’til It’s Over

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I don’t know about you, but I’m exhausted from watching the World Series. And even with the Red Sox now leading three games to two, the outcome is still anyone’s guess. With the exception of the Game 1 rout of the Cardinals at Fenway—a misleading, far-too-easy, albeit satisfying start for us Red Sox fans—each ensuing game has been a nail-biter through the bottom of the ninth. Even though most games have ended around midnight here on the East Coast, I’ve had to stay up and read a bit before falling asleep. Too much adrenaline.

REd_Sox_Washington_cropWould Cardinals slugger Carlos Beltran recover from his bruised ribs after crashing into the Fenway fence to catch the fly ball that cost the Sox a grand slam in Game 1? Would Red Sox slugger David Ortiz break the Cardinal pitchers’ lock on our offense and hit another one out of the park? Would any of us Sox fans recover from the obstruction call that threw Game 3 to the Cards?

My sister, who lives in St. Louis, is a die-hard Cardinals fan, so we’re enjoying a friendly rivalry of evening texts during each game. “I’m not talking to you right now,” she wrote after I texted how they got lucky with Beltran’s amazing save. I tried not to gloat when we won that first game, a good thing, because the next two games were heart-breakers for the Sox.

After we evened the series with Game 4, thanks to Jonny Gomes’s three-run homer and closer Koji Uehara’s picking off pinch-runner Kolten Wong at the bottom of the ninth with Beltran at the plate, she wrote, “Feel better?”

Yes, I did. This series gets settled at Fenway.

So, what does this have to do with living with scleroderma, you ask?

Well, let me tell you. First of all, watching a great World Series between two outstanding teams, one that’s your home team and the other that’s your sister’s, is a great way to forget about anything else that’s on your mind.

To wit, in the scleroderma department, my latest mishegas is yet another infected ulcer, this time in one of my toes, that necessitated starting antibiotics once again. Just as I was marveling how my toe was responding so well to the drug, returning to its normal color and shape, no longer waking me up at night with pain, a friend who is a geographer at Clark University shared her recent experience reviewing a National Science Foundation project in Baltimore (stay with me, this is relevant) that found conclusive evidence of antibiotic-resistant strains of bacteria in the Chesapeake Bay watershed.

This, in itself, is not news—ARBs, as they are called, were discovered this summer in the Hudson River, and have been found in water supplies around the world for at least a decade. The problem, as my friend explained, is that all the big pharmaceutical companies that have developed antibiotics, including Pfizer, one of the first large-scale manufacturers of penicillin, have discontinued their research and development of new antibiotics to treat the new resistant strains because it’s simply not profitable. This insidious public health problem, akin in potential impact to climate change, was discussed in a recent PBS Frontline program with infectious disease specialist Dr. Brad Spellberg. Scary news for one too prone to infections and anxiety.

No wonder dystopian movies are all the rage. Take me out to the ballgame. Please.

Second, watching the match-up between such worthy contenders is a lesson in mindfulness. Every time our guys are at bat or on the mound, I’m right there with them, totally focused on the other guy’s next move. Will it be a fast ball or a change up? A ball or a strike?

Each player has his little rituals for good luck, to manage tension—Gomes screws his hat onto his head before entering the batter’s box for the next pitch, Ellsbury adjusts and readjusts the strap on his batter’s gloves, Uehara takes a deep breath and peeks over the tip of his mitt before hurling another strike. I have to remind myself to take a deep breath, too. It’s only a game, right?

Finally, watching a great World Series is fun. The wily pitchers! The burly sluggers! We’re behind! We’re ahead! The bobbles! The beards!

All of us are more than just the sum of our health problems, our worries, our fears. The world can be a dangerous, frightening place. But for these few nights in late October, when the best Boys of Summer face off for a record-breaking, statistic-busting contest of will, strength, talent and strategy, I’m glad to be right there, cursing, cheering, hoping against hope for nothing more than the Sox batter’s ball to fly high and true, into the stands, into the glove of some grinning, bright-eyed kid who will remember this night for the rest of his life, believing that anything is possible.

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.