Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Weather Spotting

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Hot. Cold. Hot. Cold. Hot. Cold. Hot.

‘Tis the season for unsettled weather, which always seems to be the case in New England. As the saying goes, if you don’t like the weather here, wait a few minutes.

My neighbors walk their dogs and tend their lawns in shorts, tee-shirts and flip-flops, but I’m still doing my thing with more layers than I’d like—long pants, a sweater or sweatshirt over a lighter top, my indispensable wrist warmers, socks and shoes.

I took the bold step of bringing my winter sweaters to the dry cleaners only last week, but missed them a few days later when we were deluged with cold rains that triggered my Raynaud’s and caused a messy leak in our basement. Why, I wondered, couldn’t the rain have fallen over Colorado’s burning Black Forest, where it was really needed?

Of course, you can’t control the weather any more than you can control a chronic disease with a mind of its own. The only thing you can control is the way you respond.

Managing my health takes much vigilance, many doctor’s appointments, good nutrition, regular exercise, taking all of my meds every day, tending my finger ulcers to ward off infection, getting as much of a good night’s sleep as I can, recognizing and managing stress triggers, appreciating love from family and friends, common sense, pro-active problem-solving and doing my best to stay positive. That’s the short list.

Dealing with the weather is a different beast. It’s not just about following forecasts so I know how to dress and keep warm. It’s also about trying to understand and not get overwhelmed by the strange shifts and extreme weather patterns we’re all experiencing. Fatal floods in Europe, record-breaking forest fires in the Rockies, the Oklahoma City tornado, last fall’s Superstorm Sandy—not a week goes by when there isn’t another extreme weather event somewhere around the globe. Lately I’ve been looking at the sky and feeling like it doesn’t make sense any more.

Mark Twain (or perhaps one of his contemporaries) famously said, “Everyone talks about the weather, but nobody does anything about it.” Well, I decided last week to do a little something. A bit of a weather geek to begin with, I drove an hour-and-a-half to Manchester, N.H., one evening to attend a three hour training as a National Weather Service (NWS) volunteer weather spotter.

Weather spotters fill in the observations that radar can’t pick up closer to the ground—like the size of hail or the siting of a funnel cloud, where there’s flooding or whether winds are strong enough to topple healthy trees. I can now explain how tornadoes form, what kinds of thunderstorms are the most dangerous and their warning signs. I have an official weather spotter ID and the number to call for our NWS bureau in Taunton, Mass., to report on signs of serve weather.

It’s my own small way of responding to climate change. If I can help to fill in the blanks about approaching storms, then maybe I’ll enable someone to get out of harm’s path.

It also gives me some sense of control, albeit illusory. At least I have a better understanding of what clouds signify and why hail falls and when to run to the basement.

In a perfect world, we wouldn’t have to worry about any of this—tornadoes that drop out of the sky and destroy elementary schools or diseases that appear out of nowhere and ravage our bodies. But the world is far from perfect. It just is. All we can control is our own response. This is mine.

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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.

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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.

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.

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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.

Glass Half Full

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I finished this post about an hour before news broke of the bombing at the Boston Marathon yesterday. By comparison, it feels trivial. But I share it here, today, nonetheless, because life goes on. My thoughts and prayers are with all those affected by this insane tragedy. Life is precious. We need to cherish what we have, whatever the challenges, and support each other through the struggles.—EH

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Last Thursday I dropped my iPhone in a glass of seltzer. Fortunately, thanks to its sturdy Otterbox case, it didn’t get ruined. Thanks, also, to a good friend who removed the case (not something I can manage very well with clumsy fingers) and zapped a few hidden drops of seltzer with pressurized air, the phone was thoroughly dried before I used it again.

This is only the most recent episode in a recent spate of dropping stuff. Lately, things seem to jump right out of my hands, leaping to freedom before they crash—or plop—as the case may be.

I’ll pick a knife or fork out of the cutlery drawer, only to watch it spring from my fingers and skitter across the floor. Or my toothbrush will fling itself into the sink. Or the cordless phone will take a swan dive.

It’s quite startling. I have yet to figure out what cues I’m missing, but I suspect it’s due to some kind of nerve damage in my fingers from years of Raynaud’s—a dichotomous mix of lost sensation and hypersensitivity to any ulcerations or skin damage. It’s also a matter of the object’s size and weight—small enough to be picked up with one hand, but just heavy enough to require a firm grip—which I don’t really have any more.

My hands don’t believe it. Relying on decades of kinesthetic memory, they grab, reach, scoop, turn and twist without conscious direction. Of course I can hold onto that knife. Of course I can grasp my toothbrush. Of course I can pick up the phone. Even when I can’t.

In a sense, this is related to the phenomenon of the phantom limb—when a part of the body is amputated, but still feels as if it’s attached and functioning as always. Although my fingers and hands have deteriorated over the past 30 years, I often still operate as if they hadn’t changed. Then I reach the wrong way for something and smash a fingertip because I misjudged the distance, relying on kinesthetic memory instead of visual cues. Or I assume I can complete a task in a third of the time it now takes me, despite repeated experience that my hands just don’t function that efficiently. Or I drop stuff that I think I’m holding firmly, overriding feedback from fingers to brain.

So far, thank goodness, I haven’t done any serious damage. I haven’t broken anything valuable, I haven’t hurt anyone or myself and I haven’t lost anything important—at least, as far as I know. I’m more vigilant when picking up things that are fragile. I use my forearms for extra support when carrying heavy objects. I try not to rush tasks that require dexterity.

But it is unnerving. My hands, damaged as they are from scleroderma, have always been my trusted helpers. I don’t want to believe that they—I—simply can’t do for myself as I used to. I’ve accepted my limitations, to a large extent, but at another level, still can’t.

Dysfunctional, perhaps. All the leaping forks, toothbrushes, keys, phones, makeup applicators, pens and other objects craving to demonstrate Newton’s Law of Gravity may well be vying for my attention, willing me to fully acknowledge the reality I’ve been living with for years.

And yet. There’s a balance to be struck, between accepting limitations and not being defined by them. My fingers’ denial of sensory evidence to the contrary, my mind’s denial that I’m less able than I was before, are what keep me from sliding into a depressed, glass-half-empty view of my life and what the future holds.

Like Archimedes in his bathtub, when my iPhone plopped into the seltzer, it raised the fluid level in the glass. Worth noticing. Worth rescuing. Worth figuring out how not to do it again. But otherwise, not worth much more than a laugh and a sigh of relief.

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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.