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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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managing chronic disease

#19

Evelyn Herwitz · May 13, 2014 · Leave a Comment

Friday afternoon, Greenwich Village. Al and I squeeze into two remaining back row seats of a tiny, darkened theatre at the IFC Center just as the previews end. The acclaimed documentary is Manakamana, a mesmerizing character study of pilgrims traveling to and from a Hindu temple in Nepal via cable car. This is first on my list of things to do on our big weekend celebration of my 60th birthday and Mother’s Day. I’ve been looking forward to this trip for weeks. And I have a toothache.

Central Park Bass 5-11-14I have a rare complication of scleroderma: The roots of some of my teeth are resorbing. So far, I’ve had a couple of back molars extracted and a front molar replaced with an implant. My dentist and periodontist have been monitoring the relentless deterioration of several other molars, since. The worst one, lower left, has been hanging on for five years, occasionally oversensitive to cold, but manageable. If it had a name, it would be Grumpy. But it only has a number, 19.

A few days before our trip, 19 was acting up. I assumed it would calm down with careful tending, per usual. But as we drove closer to NYC Friday afternoon, the twinges were becoming more persistent. I tried to ignore it.

A couple sits shoulder to shoulder in the cable car. He wears a traditional peaked cap, shirt and vest, and carries a live rooster. She wears a red blouse and necklace of green beads. Her face is shriveled. She leans with her arm over the back of the seat, exhausted. He checks his watch. As the car rides higher and higher above terraced corn fields and sal forests, she brightens. It’s fun to go to the temple, she says. It’s good to go out when you can.

As we leave the theatre, I realize that not only is 19 aching, but the pain is also traveling into my left ear. I can’t believe this is happening. I’ve come prepared with my pharmacopia of meds, but I don’t want to deal with a rotten tooth on my birthday weekend. It’s drizzling. We sit on a bench outside a bakery to sort out options. I don’t want to ruin everything we have planned, and I certainly don’t want to waste time in an ER or try to find a dentist who may not take our insurance. So we agree that I’ll try to manage the pain with my meds, wait and see.

Later that night, after a great meal (despite 19) of wine and risotto, enhanced by Al’s magical ability to find interesting people (across from the cafe, at an artist’s opening in a church gallery, we shared Shabbat candle lighting and kiddush), I lay awake, unable to sleep in strange surroundings. My mind travels back to the film.

Three young long-haired men, all dressed in black, joke and fiddle with their digital cameras and cellphones as the cable car travels up to the temple. It feels like we’re going up steps, says the one in the middle. My ears keep popping. They pose for each other’s selfies and play with a scrawny kitten. People ski on hills like this in other countries, says another. What if the cable broke and we fell, laughs the third. 

Despite a fitful night, I get just enough sleep to go ahead with our plans for the day. So far, 19 is achey but manageable. It’s warm and the sun is shining. We attend Shabbat services at B’nai Jeshurun on the Upper West Side, then take a long stroll through Central Park, watch turtles sunning by a pond and wander through the Shakespeare Garden. I lie down on a bench while Al explores. People row on the lake, others play softball. Horse-drawn carriages clop along the road. The skies open up and we take refuge in the Museum of Modern Art–Al’s first-ever visit. I’m weary but elated to view these stunning works once again and watch Al’s enthusiastic response.

It’s still raining when MoMA closes, but we find a great restaurant right next to the Broadway theatre that is our final stop for the evening. I’m revived by the meal and we finish just in time to pick up our tickets for After Midnight, a revue of Cotton Club jazz from the ‘30s, starring Vanessa Williams. The music, singing, tap dancing, costumes are spectacular. Even from the very last row of the rear mezzanine, we can see everything perfectly. Exhausted, I sleep through the night, grateful that 19 has not gained the upper hand.

Three women sit in the cable car, dressed in bright colors and beads, their hair white, their faces gnarled like the bark of ancient trees. They talk about how their husband couldn’t come because he twisted his ankle while carrying a bucket of water he had drawn. They nod and look out the glass windows of the cable car, admiring the view. Life is so much easier than it used to be, one says. We had to struggle to survive.

Sunday is warm, beautiful. We enjoy a hearty breakfast in a little cafe, a stroll to the East River, and then head to the Brooklyn Botanical Garden for a glorious walk beneath blossoming cherry trees. Next door, at the Brooklyn Museum, we immerse in the works of dissident Chinese artist Ai Weiwei and so much more. I make sure to take my pain meds on time, to keep 19 in check. We reluctantly depart for home when the Museum closes its doors at six.

On Monday, I call my dentist and get a late afternoon appointment. The x-ray tells the story: There is a round gray shadow over the molar’s left-branching nerve. The resorption has exposed it. Nineteen has to go. It will take six to nine months after the extraction to complete the implant. Not surprised, I accept the bad news reluctantly, rub my achey jaw and drive home. At least the procedure will get split between this year’s remaining dental insurance and the next.

Two men sit in the cable car, each holding a stringed instrument and a bow. The older one looks out the window and recalls walking over the hills below to get to the temple, before there were even paths. We should tune up, he says to his younger companion. As the cable car descends, they watch treetops pass while playing a rhythmic folk melody, round and round and round.

 

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.

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Filed Under: Body, Hearing, Mind, Sight, Taste Tagged With: body-mind balance, managing chronic disease, resilience, tooth resorption

Suit of Armor

Evelyn Herwitz · April 29, 2014 · Leave a Comment

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.

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Filed Under: Body, Hearing, Sight, Touch Tagged With: body image, how scleroderma feels, managing chronic disease, resilience

Six-Oh!

Evelyn Herwitz · April 22, 2014 · 2 Comments

It’s official. I’m now in my seventh decade. Last Friday was my birthday, the big 6-0.

hydrangeasI’ve actually been looking forward to this milestone. First of all, 60 doesn’t seem nearly as old as it once did. Funny how that works—when you finally get here, the view is longer, deeper, more nuanced, not the caricature of feebleness that I envisioned when I was young. (Of course, my twenty-something daughters have had a field day, teasing me about senior moments. Mostly, I’ve laughed.)

Second of all, 60 feels like an accomplishment. I’ve been living with scleroderma for more than half my years, now. It is certainly wearing, exhausting and painful at times, frustrating, angering to feel gradually more limited in how much I can do with my hands or accomplish in a day. Each year brings new medical challenges.

But I’ve beat the odds on longevity and developed strong coping skills and plenty of resilience. I may have achieved this, anyway, with age, but I believe this complex disease has also taught me a lot about patience and persistence that I might not have learned otherwise. For a 60-year-old with scleroderma, I’m doing damn well, thank you very much, and I intend to do my best to keep it that way, whatever this disease throws my way.

So, I was looking forward to a celebratory day off on Friday, devoted to art—my own fiction writing and a trip to the Worcester Art Museum.

My body, however, had other ideas. Thursday afternoon, on my way home from a routine check-up with my Boston Medical rheumatologist, my joints began aching and I was flashing hot and cold in the car. My stomach had been irritated all day, from, I assumed, too much matzo for Passover.

I ascribed the joint pain to skipping my Ibuprofen due to the irritated stomach. After a light meal, I felt a bit better. That is, until evening, when I was dozing on the couch and suddenly felt like I was going to pass out. Thankfully, Al was home to help.

And that is why I spent my birthday flat on my back, sipping only water, trying to let my GI tract heal from what was by then, obviously, a virus. This was not the day I had planned.

I was determined, however, not to let a most unwelcome stomach virus ruin everything. So I wrote on my laptop and finished revising a short story that had been languishing for more than a year. That, plus greetings and gifts from family and friends, two beautiful hydrangeas that Al had brought home the night before and a cuddly stuffed turtle that he gave me that evening (nothing like being babied when you’re feeling crummy) helped to salvage the day.

I’m writing on Sunday, sitting at my desk again, able to eat very bland foods, looking forward to joining a group of good friends for dinner tonight as we begin the last two days of the Passover holiday. The art museum is closed for Easter Sunday, so I’ll postpone that visit a bit longer, keep it as something to look forward to. In May, Al and I will celebrate my birthday with a weekend in Manhattan.

Much as I wish it had all gone differently, somehow, it seems, this is what 60 is all about—taking the imperfections in stride, making the most of each day, whatever your state of health, appreciating the love of family and friends. And, for me, making art. Time to get over the fear-of-rejection hurdle and start sending out those short stories for publication.

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.

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Filed Under: Body, Mind, Taste Tagged With: body-mind balance, managing chronic disease, resilience

Tender Is the Grass

Evelyn Herwitz · April 8, 2014 · Leave a Comment

Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60’s before I can switch to a shorter wool coat, high 60’s or even low 70’s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: conjunctivits, finger ulcers, managing chronic disease, Raynaud's, resilience, Sjogren's syndrome

In Transit

Evelyn Herwitz · March 25, 2014 · Leave a Comment

I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, all!

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease, resilience, travel

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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