Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

In the Belly of the Beast

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There’s no such thing as a non-invasive test. Some are just more invasive than others.

Last week I found myself inside a clanging, banging, buzzing, bleeping MRI machine, undergoing a 25-minute diagnostic that was probably unnecessary, one of those just-in-case procedures you occasionally have to endure because one of your specialists needs to validate a hypothesis and define a baseline.

I’d had an MRI once before, at Boston Medical, lying on my back with a pair of headphones, listening to Ray Charles. The procedure was longer, but the music was good enough to distract me from the machine’s clanging, so the time passed relatively quickly.

Not so last week at an outpatient facility near home. First of all, the position was uncomfortable. I had to lie on my stomach, head in a padded masseuse-like cushion, arms forward, another pad pressed against my abdomen, ankles draped over some kind of wedge, like a swimmer frozen in a dead man’s float. Secondly, the music was lousy—a choice between two stations I dislike (pop rock versus easy listening) on headphones with poor reception. So equipped, unable to see around me, with an IV in my arm and a rubber squeeze ball to grasp in case of emergency, I slid backwards into the MRI’s gullet.

Buzzing soon commenced. Through the headphones, I could hear the tech’s voice alerting me that this first scan would take five minutes. BEEEEP. BANG-BANG-BANG-BANG. I could barely hear the music because of all the static in the headphones, let alone all that banging and clanging, and the song wasn’t anything I really wanted to listen to in the first place, but I hung onto the notes so as not to start feeling claustrophobic.

CLANG-CLANG-CLANG-CLANG. The music ended and the announcer started jabbering, followed by a lot of commercials that sounded like gibberish. I tried to figure out how many more of the five minutes were left by counting the number of ads. Finally, a moment of silence inside the machine.

BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. Another series of scans. I did my best to keep breathing without moving anything I wasn’t supposed to move. This was not easy, especially with the pad compressing my diaphragm. I practiced Pilates breathing, expanding the sides of my rib cage. I wondered if either of the techs had ever gone through this procedure. I decided this should be part of every MRI tech’s training.

The tech’s voice in my headphones informed me that she was now going to insert the contrast dye through the IV. I might feel a cool tingling, but if I took a few deep breaths, the sensation would pass. BEEEEEEEEEEP. BANG-BANG-BANG-BANG. Somewhere in the background, I could hear Billy Joel’s “Just the Way You Are.”

I tried to monitor the progression of the slightly cool dye through my veins. I have an allergy to certain contrast dyes, but I had been assured this was very safe. BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. So far, so good. I tried to focus on the barely audible lyrics as the machine moved through a series of five scans, grateful for the brief silences between each cacophonous set.

More commercials. Next up, “I’m Never Gonna Dance Again.” Yuck. The voice in the headphones said this was going to be the last set, a two minute scan. Thank goodness. BLEEP-BLEEP-BLEEP-BLEEP-BLEEP.

All of a sudden, I felt flushed and unable to get a full breath. I tried to calm myself, but my breathing was too shallow. I squeezed the rubber ball several times. The tech and her assistant were both in my headphones, slightly annoyed. This was the final scan, just two minutes left, what was wrong? “I feel like I’m going to faint,” I said, twice. The machine stopped. A door opened. I moved forward. Someone took my hand, probably the assistant. The tech reassured me it couldn’t be a reaction to the dye, I’d had it seven minutes ago and been fine, it was like aspirin, it would just pass through my system. The weird sensation lifted, and I was able to breathe fully again. Back into the belly of the monster.

BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP. Not a procedure for anyone with a propensity for migraines. I told myself it would be over soon and marveled at how anyone in their right mind could think all these decibels should be tolerated for the sake of more medical data points.

At last, blessed peace. The awful radio music ended, too. I could feel myself moving out into the open air of the room. As the tech removed the IV catheter, she noticed my bandaged fingers.

“Are you a nail biter?”

“No, I have scleroderma.”

“Oh.” Silence. She had no clue what I was talking about.

I sat up, slowly, feeling groggy. The assistant brought me a bottle of apple juice. I took a few sips and wondered aloud why the machine was so noisy. The tech explained that it had to do with the various levels of magnetic resonance. Then she added, “A man made it. That’s why it doesn’t work right.”

I was still a little woozy getting dressed, but relieved to slip my wedding ring back in place. Fresh air felt wonderful. I took another sip of juice as I relaxed into my car seat, Symphony Hall playing on my satellite radio, then realized I’d forgotten to ask when the test results would be available. But I didn’t really care. I’d hear soon enough.

Down the street was a car wash. No one was in line. As my Prius drifted gently into the dark, automated cavern, I lay back, listening to Brahms, drinking my juice, and watched the clear, fine spray wash the last traces of late winter’s grime from my windshield.

Photo Credit: digital cat  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.

Take Me Out to the Ball Game

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Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.

Going for a Walk

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This past Sunday, on a blue-sky spring day, my husband joined more than 300 people whose lives or loved ones have been affected by scleroderma, on a three mile walk to raise awareness and funds for a cure. Sponsored by the New England chapter of the Scleroderma Foundation, this was one of hundreds of walks around the country that are organized each year in communities large and small, providing an important revenue stream for medical research grants.

Paul Klee, "Cat and Bird," 1928, at MoMA
Paul Klee, “Cat and Bird,” 1928, at MoMA

There is, as yet, no known cure for scleroderma, and both the Scleroderma Foundation here in Massachusetts and the Scleroderma Research Foundation in California depend on armies of volunteers nationwide, through events like awareness walks, to help garner support for their fundraising efforts. Each foundation distributes about a million dollars annually for promising research—grants needed more than ever during this time of sequesters and congressional gridlock over federal spending.

Al is much better than I am at this kind of event. I’m always uncomfortable asking for donations. My forte is raising awareness through words. Al, however, is a great fundraiser. Last week he sent out an email to family and friends asking for sponsors, and by Sunday he had collected more than $200. A record number of participants joined the walk, and I was proud of him for being one of them.

While Al was striding for a cure Sunday afternoon, I was trekking through the crowded corridors of Penn Station, on my way to a two-day business meeting. We wrapped up early on Monday afternoon, giving me just enough time for my own private scleroderma pilgrimage. I set out into the crisp spring sunshine, pulling my rolling suitcase down Manhattan sidewalks, through subway stations, across 5th Avenue, along 53rd Street to the Museum of Modern Art, to finally see, in person, the works of Paul Klee.

Paul Klee, "Letter Ghost," 1937
Paul Klee, “Letter Ghost,” 1937

A member of the German Expressionist Blaue Reiter Group a century ago, a distinguished faculty member of the Bauhaus school of art in the 1920’s, Klee created a lyrical mix of abstract forms and hieroglyphics, a “visual vocabulary” inspired by music, nature and poetry in his intricate drawings and paintings. Luminous, whimsical, haunting, his art is a journey into dreamscapes. He once described the act of drawing as “a line going for a walk.” But when the Nazis rose to power, they targeted Klee’s work as degenerate art, and in 1935, he was exiled from Germany to his native Switzerland.

Isolated from his intellectual circle of artists, who included his close friend Wassily Kandinsky, alone with only his wife for emotional support, stonewalled in his efforts to regain his Swiss citizenship, Klee became ill. A strange rash and long bout with pneumonia left him severely weakened. Other symptoms eventually surfaced. The skin on his face began to tighten. He developed difficulties swallowing and digesting. In a meticulously researched account, Paul Klee and His Illness, physician-author Hans Suter deconstructs Klee’s health struggles and concludes that the artist was suffering from diffuse systemic sclerosis.

Miraculously, Klee’s hands were not affected by the disease, and he was determined to continue drawing and painting. Despite fatigue, painfully tightened skin and ongoing problems with his digestion, lungs and heart, he created thousands of works in the five years he battled scleroderma and suffered through the treatments of the day—including, according to Suter, an infusion of olive oil and turpentine, believed to be a beneficial stimulant that would shock the immune system back to normalcy.

Paul Klee, "Intoxication," 1939, at MoMA
Paul Klee, “Intoxication,” 1939, at MoMA

Nothing worked. Klee was focused and courageous in the face of his disease, but he also eventually came to understand and accept that he was dying. His later works are full of dark lines, wistful angels, pain and loneliness, infused with irony and deep, rich color. He died in 1940, at 50 years old, a few days before the local canton government finally took up his citizenship application.

Medical research has come a long way since Paul Klee’s battle with scleroderma. No one believes in olive oil and turpentine infusions anymore, thank goodness. But we still have many steps to walk before a cure is found. As I stood before Klee’s subtly complex paintings, marveling at his detail and textures and many-hued washes, I wondered what more beauty he might have created, had he had the benefit of today’s medicine. I hoped to be as courageous in my own art. And I thought how wonderful it would have been to have walked together.

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.

The Random Factor

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Every morning, once I’ve worked the kinks out of my joints, made the bed and done some stretching, I wash my hands and sit down with manicure scissors, clippers, nail file, tweezers, ointment, bandages, wound dressing and moisturizer to tend my fingers. I pick and nip any shreds of dead skin, clip nails that have split or splintered at the corners, file away rough skin patches and inspect for signs of inflammation. Then I treat and bandage any open ulcers and slather on moisturizer, rubbing and wringing my hands over and over until the skin no longer feels sticky.

This is how I try to protect myself from the world—all the inevitable bumps, bangs, cuts and bruises, as well as all the nasty germs that could invade my body through cracks in my skin, inflicting pain and havoc.

It takes time, this daily ritual, sometimes five minutes, sometimes a half-hour, depending on what I did with my hands the day before, how well they have healed in moisturizer and white cotton gloves overnight, and the random factor.

In statistics, random factor analysis is used to determine whether an unusual observation—a data outlier—is caused by random events or some underlying trend.

Each morning, as I clip and nip, I perform my own informal random factor analysis: Did I get this ding when I banged my finger on the kitchen chair? Is this soreness on my pinky from tapping too often on my iPhone? Does this nail-bed inflammation stem from forgetting to wash my hands when I got home after running errands and using the germ-covered keypad at CVS without my gloves? (All random events.) Or is the increased number of recent ulcers due to the extremely cold and fluctuating temperatures these past few weeks? (An underlying trend.)

Trends, such as weather patterns, are a bit easier to cope with, once identified. I just need to dress with greater attention to the forecast. More layers. Don’t mothball the down coat or sweaters quite yet. Keep those scarves and wrist-warmers handy.

Random events are the most challenging because, by definition, they’re random. I have no idea that I misjudged the distance between my finger and the back of the kitchen chair as I reach to pick my wallet off the table until I feel the pain. I can’t anticipate an ulcer on my iPhone pinky when for months the finger has been fine and I haven’t changed my frequency of tapping and texting. I don’t always get an infection every time I use a check-out keypad bare-handed, though I’m beginning to douse my hands in antibacterial hand cleaner as soon as I get back in my car, just to be safe.

You could say that I’m constantly adjusting and adapting my protective behavior as I continue to gather more data points.

But random is as random does. You just can’t anticipate all the bad stuff you’re going to run into every day. Or, to be fair, all the good stuff, either.

So my morning ritual is as much a meditation on my state of being as it is a random factor analysis. Here is where my fingers are today. This is how the rough patch of skin feels before and after I file it down. That is an incipient hangnail in need of trimming before it gets worse. Here is how much dead skin I can cut away to sense more through my thumb. That ulcer still needs a bandage. This one looks like it could go without, finally.

Rub, wring, rub, wring. The moisturizer absorbs into my pores, a silky, invisible film to keep my skin flexible and ready for whatever the day may bring. This is how I try to protect myself. This is how I face the world each morning.

Photo Credit: topher76 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.

Aftershocks

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The tension has lifted here in Massachusetts. The sun is shining, the sky is blue, the trees are leafing, the forsythias are in bloom. Friends and family in Greater Boston who were locked in their homes all day Friday as FBI and police tracked down the fugitive Marathon bombing suspect have enjoyed a beautiful weekend of freedom. Neil Diamond flew to Boston on his own dime to sing “Sweet Caroline” with cheering Red Sox fans on Saturday afternoon, and our boys beat the Kansas City Royals, 4-3.

b_strong_blueAll weekend we’ve been sharing stories of near misses: friends who spent three hours at the Marathon finish line, right where the first bomb was planted, only to leave five minutes before it detonated to catch the T; friends whose apartment overlooks Boylston Street and felt the blasts; another who discovered his home is a few short blocks from the suspects’ Cambridge apartment pipe-bomb stash; a friend who chose not to run this year, who probably would have been crossing the finish line right at the deadly moment.

Surreal is the only word that describes this past week. It feels like we’ve all been living in a Hollywood disaster movie—except it actually happened. There is a collective sense of relief that it’s over, shared grief for the victims and their families, and pride in how Boston rose to meet this horrible tragedy.

But there is also a heightened sense of vulnerability—so many innocents struck by a random, senseless act of violence. And so many tiny decisions that led one person to be in the wrong place at the wrong time, and another, equally innocent, to stay clear of harm’s way.

The reality, however, is that we’re always vulnerable. Life is full of risks, all the time. The chance of being struck down by a terrorist’s homemade pressure cooker bomb is significantly lower than the chance of being struck by a drunk driver or the chance of being stricken by a debilitating, chronic disease.

We compartmentalize our awareness of most risks, because we live with them every day. As long as we don’t ignore risks completely, but take reasonable precautions, we’re undoubtedly better off, because to focus on what-if’s all the time is to become paranoid and paralyzed.

But living with a chronic illness, whether it’s scleroderma or one of a thousand other diseases, brings a sharper, lingering awareness of vulnerability, because it forces you to face your own mortality sooner than you might otherwise.

If you’re managing your disease well enough, that awareness is more like white noise in the background unless you have a flare-up. When something like this past week’s horrific event occurs, the sense of threat intensifies. It’s not only the fear, What if it had been me? It’s also the fear, How would my chances of survival or escape have been further compromised by my illness?

This is not to minimize, in any way, the real losses suffered by the victims of the blasts and their loved ones. It’s just the nature of aftershocks. If I were stronger and healthier, I probably wouldn’t have been quite as frightened, and I probably would have gotten more sleep this past week.

I have no answers to all the what-if’s. I have no idea what I would have done if I had been there. I’m profoundly grateful that I wasn’t. My thoughts and prayers go to all those who lost lives and limbs, and my thanks, to those who saved so many. I hope it never happens again. I fear that it will.

We live in a dangerous world. All we can do, the only thing we can really control, is our focus—to appreciate fully every moment that we have, and never take our lives, however complicated and challenging, or those we love and who love us, for granted.

Image Credit: Boston Red Sox

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.