Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Of Traffic Cones and Lobster Traps

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‘Tis the season for parking space bouts.

After about a foot of snow accumulated across Massachusetts last week, Boston streets were a mess. One guy in Southie clocked an older neighbor after they got into an argument over a parking space. It seems the older guy had paid someone to shovel it out, and then, later that day, the younger guy took the space. The older guy “allegedly” cursed and spit at the younger guy, and the younger guy “allegedly” punched him in the face, landing him in the hospital. The younger guy was charged with assault and battery on someone over 65.

So much for civility. (Okay, kids, let’s remember to keep our hands to ourselves and use words to express our feelings.)

To warn off interlopers, there’s a venerated tradition in these parts of marking your shoveled parking space with traffic cones, old chairs, garbage cans or even lobster traps. Technically, this is only legal in Boston for 48 hours after a snow emergency (not the case last week).

From police reports, it’s unclear whether the older guy staked his space, regardless of parking regulations. Of course, if the younger guy had had any common sense or a drop of consideration, he would have known better than to park in a neatly cleared spot in front of his older neighbor’s home. There were undoubtedly better ways to resolve the dispute. On the other hand, it was a open parking space on a public street.

Which is why I’m intrigued by this story and have taken you on this long digression to make my point—boundaries in relationships are often murky, unless we strive to be clear about our personal limits, intentions and expectations.

Finding an appropriate way to do that without resorting to blows, abusive language or other offensive behavior is an essential life skill. Especially for those of us managing a chronic disease, particularly during the often stressful holiday season, setting clear boundaries to maintain and protect our health is crucial for well-being.

I have gotten better at this as I’ve lived for decades with scleroderma. I try not to yell or scream or manipulate others to get their sympathy when I’m feeling crummy or scared. I strive to set realistic limits and make my needs clear.

To wit, I only attend holiday gatherings that I really want to attend. I have learned to decline requests, politely but assertively, for social commitments that would drain my energy. I am (slowly) learning to ask for help with cooking and scaling down overly elaborate menus that I no longer can prepare (a reverse setting of boundaries with my ego, which still pushes me to be Superwoman). I avoid malls as the holidays approach and do all my gift-buying online. Whatever the time of year, I am coming to accept that I need to set limits with how much I can realistically accomplish in a day or a week in order to maintain my health—physical, mental, emotional and spiritual.

None of this is easy. I still sometimes resent having to set these boundaries when I’d rather be able to do more. But it is what it is. And there are advantages to setting out those virtual traffic cones and lobster traps, reminding myself and clarifying for others that I need to do less, to preserve my health and free up mental and emotional space to appreciate what’s right in front of me.

As I write, it’s drizzling outside my office window. Temperatures hover just above freezing before more cold air blasts through Massachusetts later this week. Not much of a white Christmas for celebrants. But at least there should be plenty of street parking.

Whatever your holiday practice, I hope your festivities are filled with joy, health, well-mannered family gatherings and clear communications about what you’re up for and where you need to draw your own boundaries. Best wishes to all, and be well.

Photo Credit: onesevenone 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.

Biker’s Paradise

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In three weeks, it will officially be winter. But January temps arrived here last week, way too cold, too soon. Mornings and evenings in the teens, bitter windchill, the works—only the snow hasn’t arrived, yet.

All of this made me realize that I need to solve a big problem I’ve been ignoring—I need to replace my very worn-out, favorite, red-suede, insulated winter gloves. The holes in the right hand can’t be mended and are growing bigger with each wearing.

Now, for most folks, this is not a big deal. Especially at this time of year, stores are well-stocked with rainbow displays of gloves of all different materials, styles and warmth. But my fingers are much shorter than an average size 7 glove, what I’d wear if I had normal hands. I don’t.

Due to complications with severe Raynaud’s and my scleroderma, my fingertips have all resorbed to stubby nubs. The longest finger on my right hand is only 2¼ inches long. I often have several fingertips bandaged to protect my ulcers. So normal gloves always have about an inch of extra fabric at the top that flops around and makes it hard to pick up things. Also, the fingers are often too narrow to accommodate my bandages. Children’s gloves are too tight.

I lucked out with those red gloves several years ago at a random fundraiser trunk sale. They have Thinsulate lining and roomy fingers that are shorter than standard gloves. No tag. No way to trace their origins.

So, replacing them called for some creative problem solving. I turned to the Internet and googled “women’s gloves short fingers.” At first, all I found were gloves for cyclists without fingertips. I kept looking. There were sites for outdoor adventurers, but those gloves cost a fortune. Custom-made gloves were out of the question.

Then I discovered sites for bikers. A goldmine. It would never have occurred to me, but, of course, bikers need warm gloves for cold weather—sturdy, insulated, flexible leather gloves for gripping motorcycle handles.

The idea of walking into a biker shop, however, felt a bit intimidating. I’m sure I’m guilty of stereotyping, but I’m about as far from a biker as you can get. So I did some more online search and found a great biker retail store near Boston. They sell very affordable leather gloves in a range of sizes, with wide fingers that look slightly curved. Perfect.

I could have emailed, but I decided to call. A pleasant woman named Melanie answered. I explained my dilemma, that I have very short fingers and wasn’t sure what size to order.

“Oh,” she said, “you’re just like me! I have short fingers, too. I hadn’t thought about gloves, though, because I put my bike away for the winter.”

I confessed I wasn’t a biker and described the details of my hand issues.

“You’ve come to the right place,” she said. “Biker gloves come in all different sizes, for a great price.” This all made perfect sense. A real niche market.

She offered to go try on some gloves and report back. We determined that her tallest finger is about a half-inch longer than mine. A few minutes later, Melanie returned to the phone.

“I’m trying on this pair of smalls, and they are quite comfortable on me,” she said. “You might even try the extra-smalls.”

“Are you sure they’ll be wide enough across the palm?”

“I have very square palms,” she said. “Where’s that measuring tape?” She determined that her palm was 4½ inches across to the outside of her thumb joint.

“Okay, let me check,” I said. We were both laughing at this point, comparing these intimate details of our physiognomy. My measurement was about a half-inch shorter. The extra-small sounded like the right size. She assured me that the style runs to a triple-extra-small and likewise in the other direction, and that they take returns and exchanges.

I thanked her for her help and placed my order online. The gloves should arrive in a few days. If they don’t fit, I’ll drive to the store in my Prius, meet Melanie and find the right pair. I may be an unusual customer, but then, hands are hands. And it’s an adventure. Who would have thought my scleroderma would land me in a biker’s paradise?

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.

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.