Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Too Much Stuff

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My desk is out of control. This happens every few months or so, when I’ve been juggling  a variety of projects at the same time, and I have a pile for this, here, and a pile for that, there. After a while, the piles start crowding out any space in the middle, and I feel like I have nowhere to work or room to think.

Then I start moving piles to corners of my office. Problem is, the piles get dispersed, but I don’t make a decision about filing or tossing and the clutter remains unresolved. It just seems to follow the biblical injunction to be fruitful and multiply.

This proliferating clutter seems to mirror what’s going on in my life. I’m trying to do too much. I know this. I know I need to make some decisions about priorities and focus. I’m working on it. The trick is to keep this from becoming yet one more project that piles up.

I used to pride myself on my ability to multitask—the modern-day badge of honor, especially for women who juggle family and career. It’s an important skill-set, sometimes crucial for getting through the day. But there is growing evidence that multitasking isn’t necessarily such a virtue. In fact, multitasking can actually reduce productivity by up to 40 percent.

It can also be fatal—as in texting while driving.

The older I get, the more I want to declutter—my desk, my to-do list, my home, my mind. I want to eliminate the stuff that isn’t necessary and concentrate on what’s really important. I want to be able to focus on one thing at a time and give it my full attention, then move on to the next. Quality over quantity.

Essential for any well-lived life, but all the more so when you are managing a chronic disease, spend too many hours in doctor’s appointments each month and want to make the most of the time you have, especially those days when you’re feeling strong and alert and have energy in reserve.

Where to begin?

It seems that whenever I clear my desk, I begin to clear my head. I’ve also found that making a series of small adjustments over a longer period of time—rather than undertaking a major, exhausting purge—adds up to a significant, nuanced change of habit.

So my goal is to pick one pile, one drawer, one small corner to declutter each day—a small project that takes only about 10 minutes. Over the course of a week or a month, I hope to clear my space and clarify my priorities.

The Jewish High Holidays come early this year, the first week of September. The weeks leading up to Rosh Hashanah, the Jewish New Year, are a time for reflection and introspection—how to do better, be better, mend what needs tending and start afresh.

There’s a lot more to it than clearing your desk. But that’s as good a place to start as any.

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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.

Boxed In

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Last week I found myself sitting inside a tall, phone-booth-shaped plexiglass box, staring out a window at blue sky over Main Street and the County Courthouse, my nose squeezed between padded clips, panting into a rubber mouthpiece connected to some rigid tubing connected to a plastic bag.

This routine is part of my biannual pulmonary function test, or PFT, a series of measurements to assess my lung capacity and efficiency. I’ve had to undergo this test numerous times over the course of about 25 years, to keep track of how my scleroderma is affecting my ability to breathe and absorb oxygen into my bloodstream. The same tech has been administering it since I began. His name is Alan.

We’ve both gotten grayer over the decades. Alan is an avid golfer who favors tie-tacks that look like golf clubs with a little pearl for the ball. Whenever I have my appointment, I always ask him about his golf game, and he always asks me if I’ve written another book like my environmental history of our city’s urban forest, which I published in 2001.

Then I take note of what’s new in his office. This time, it’s the location of the plexiglass box. Usually I don’t have to sit in the box until the end of the series of tests, and it’s in another room—without a view. But the equipment was updated since my last visit, and now the box is in Alan’s office. Which is a nice thing, because he happens to have a corner space on the third floor of the hospital with a great view of downtown.

And the view really helps me get through the tests, especially the last series when I essentially have to hyperventilate into this bag with the door of the box closed, to control the air quality within the box. Not for claustrophobes.

Alan has a very soothing voice. “Breathe normally, now,” he instructs me after I adjust the tight nasal clips and arrange my lips around the rubber mouthpiece so no air escapes as I breathe into the plastic bag. All of this equipment is attached to the internal wall of the box, with some other tubing leading outside the box to tanks that provide the correct mix of gases. The set-up is fixed, so you have to sit really straight as you breathe into this contraption. Truly an awkward position. Nothing normal about it. At least I know what to expect after all these years.

We begin the first series (door open). “Okay, now push, push, push, push until you can’t get out any more . . . . and b-i-i-i-ig breath in!” I force out the air from my lungs until they feel flattened and then inhale a big gasp, but it always seems like I can’t refill them all the way. Frustrating. Each time I do this test every other year, it gets a little harder. Two more times to repeat. I marvel at how Alan must say the same words thousands of times annually with different patients, but never seems bored or annoyed.

There are several more variations on this basic theme of normal breathing, big exhales and big inhales. Then there’s the closed-door test, when you have to pant into the bag with your fingers on your cheeks, and then something clicks inside the connection between the mouthpiece and the bag and you have to keep panting, but your exhalation is blocked, so it’s harder. Every test requires three repetitions.

Time to remove the damn nose clips and rest in-between series, as the equipment recalibrates. I remark how the County Courthouse is all finished now, as opposed to my last visit, or was it the one before, when it was still under construction? I remind Alan how my first visit was at the old hospital, in a room with no windows and a big green metal tank with the gauge on top in full view. Now the gas tanks are hidden behind a curtain.

He pulls up the results on his computer screen. Some are within the same range as two years ago, some a little worse. I try not to get discouraged. Better to wait until my rheumatologists can interpret it for me. Overall, considering how long I’ve had this disease, I’m still doing well. Need to keep exercising.

After about a half-hour, we’re all through. “See you in two years,” I say, as I walk out the door into the white hospital corridor. Deep breath. Glad to be out of that box, heading into a blue-sky day.

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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.

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.

What a Blast

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When I was little, one of my prized possessions was a Japanese fan, the kind you could snap closed with a flick of your wrist and spread open with your fingers, gently, so the paper wouldn’t tear. It was pale gray with hand-painted, pink-and-white blossomed cherry trees and gilt edging. I don’t know what ever became of it, but I could have used it this past week.

It was really, really hot here in Massachusetts.

So hot (’90s-muggy-record-breaking-air-quality-alert-hot) that our neighbor’s three dogs were outside, barking, at 12:30 in the morning because it had finally cooled down enough for them to do their business, and I’m sure she assumed that everyone else had their windows closed and air conditioning on and wouldn’t be disturbed.

So hot that our lawn must have grown three inches, one for each day of the heat wave, not unlike the corn that grew so rapidly on hot, humid days near my home in Central Illinois years ago that you could actually hear the stalks squeaking as they reached for the sun.

So hot that I, perpetually cold, broke into a sweat just sitting at my computer in my converted-porch home office, finally tried out our new heat pumps on their dehumidify cycle—and was grateful, so grateful for the instant relief.

One weekend ago, everyone was shivering and complaining that their heat was turned off and sweaters packed away. Five days and 50 additional degrees later, it felt like deep summer, already.

Climate change, anyone?

I love heat. It makes my hands and feet very happy. But there’s heat, and then there’s heat. My perfect weather is sunny, mid-’80s, low humidity, with a light breeze. High ’90s, with air so thick it clings to your lungs, is too much, even for me.

My annual summer dilemma usually surfaces mid-July, when we get a stretch of this kind of stifling weather and I can no longer make due with just open windows and ceiling fans. Air conditioning, which we have studiously avoided for years because of my Raynaud’s, then becomes a necessary evil—too cold to tolerate for more than about a half hour, but impossible for me to concentrate, without.

Our new heat pumps provide a miraculous compromise. I can set the kitchen on dehumidify, and it refreshes the entire first floor during the hottest part of the day. Or just flip on the pump in my office for a half-hour and then shut it off again as I enjoy the residual coolness. If it gets really bad outside, there’s an AC setting, too, but I haven’t broken down to try it, yet. We’ll be paying off the interest-free loan for the next seven years, but well worth the investment to have year-round, personalized, energy-efficient climate options in every room of the house.

Not so when I leave home, though. Whenever I enter and exit a commercial building in the summer, it’s as if I’m going between this past week’s two weather extremes—from the equator to the arctic, and back again. I always carry a sweater and my wrist warmers wherever I go, so I can quickly adjust layers to the interior climate change.

This makes dressing for special summer events a major challenge. This past Saturday, we had a family bar mitzvah to attend. What to wear? I remembered the temple from the last time we were there, a few years ago for the older sister’s bat mitzvah, as icy cold. But it was in the mid-‘90s, for crying out loud! Just once, just once, I wanted to wear a summer dresses without a bulky cover-up.

I decided on a sleeveless rayon knit—lightweight, but warm—with a cotton crocheted sweater. I brought along a rayon shawl and a pair of my fleece wrist warmers, just in case. Sure enough, as we entered the lobby, I could feel my fingers chilling. On with the wrist warmers, but, fortunately, no need for the shawl. As the AC cycled throughout the service, I countered by slipping my wrist warmers on and off, as needed.

I was expecting a similar experience at the reception, held at another location. But to my astonishment, the event space was—heaven forbid—comfortable.

So comfortable that I could actually take off my sweater and wrist warmers and enjoy the next few hours with family and friends in a sleeveless dress. I cannot remember the last time this happened. It must have been back in the 1960’s when central air was still a luxury.

Maybe this phenomenon occurred because businesses are finally starting to realize that you save money if you don’t crank the AC down to 65, which most people in their right minds and bodies can’t tolerate, anyway, for more than about 15 minutes.

Or maybe it was because their central air was malfunctioning.

Anyway, I was happy. Who knows? As the world gets hotter and we finally learn, the hard way, that we can’t suck all the fossil fuels out of our planet and pump CO2 into the atmosphere without dire consequences of extreme weather patterns, we’re all going to have to adjust, one way or another.

For my own part, I’d much rather wear a sleeveless dress and carry a beautiful Japanese paper fan to a summer celebration—because everyone finally agrees to keep the AC at 78 or even turn it off and open some windows if there’s a breeze—than tote a sweater, a shawl and a pair of fleece wrist warmers in a 90-degree heat wave.

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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.