Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

Multitasking

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Friday morning. While brushing my teeth, thinking through the day ahead (must leave the house by 10:00 to get to my 11:40 annual cardiology check-up in Boston, must take my laptop with access to work files for the inevitable waiting-room doldrums), I suddenly wonder: I see my rheumatologist in two weeks, but I know he ordered a pulmonary function test to be done prior to the visit. Is it today?

I check the calendar on my cellphone. Sure enough—PFT at 2:30. I never transferred it to my desk planner (yes, I prefer a paper calendar for a weekly overview, easier to get the gestalt).

My entire afternoon is now in flux. I had a lot of work planned for when I got home. Now I really need to be in full portable office mode. I check emails before I leave. One of my clients needs to discuss a consultant’s proposal. I suggest a 1:30 call. I should be out of my first appointment and waiting for the second by then, and I can park myself in the lobby outside the diagnostic lab for the conference call. Laptop, cellphone and charger stowed in my purse, I head out the door.

Fortunately, traffic is moving well, and I arrive for my first appointment ahead of time. My doc is running a bit behind. There’s an electrical outlet near one of the chairs in the waiting room. Perfect. I set up my laptop with the charger, so I won’t drain the battery later, and begin to work through emails. Of course, this magically conjures the cardiology tech, who calls me in for my appointment.

Juggling purse, coat, computer and cord, I make it through the preliminaries of weight check-in. As she records my blood pressure and oxygenation level, my mind is on my work. I sit on the edge of the exam chair, waiting for her to calibrate the EKG machine, and watch the black second-hand of the wall clock. Click-click-click-click-click.

EKG recorded, I set up my laptop and log into the WIFI. I’m about to start up with the emails, but stop myself. Oh, right. The reason I’m here is to see my cardiologist. Better make some notes about issues to discuss. I jot these down in a small notebook and go back to work. I finish typing as my cardiologist enters the room. Switch gears. This is about my health, now.

Ok, focus. The main issue of concern is a recent episode of shortness of breath. At a party in March, I had been dancing vigorously and then stopped because my knees were getting tired. As soon as I sat down, I had trouble catching my breath. This is why I have the PFT scheduled at 2:30, to get a current reading on my diffusion rate. My cardiologist reviews the details carefully. We have been working with a hypothesis of exercise-induced pulmonary hypertension, a variant of late-stage complications of scleroderma, for several years, now. It could be that, it could be something else. But the episodes are infrequent (fortunately), my echocardiogram history is consistent and my meds are all in order, so for now, he tells me, just avoid sudden, strenuous exertion, which seems to be the trigger. Keep on exercising, though. And if it happens spontaneously or more frequently, call him. He schedules a follow-up in six months. I feel reassured.

Over the next hour, I fit in lunch and search for a quiet place to work with a WIFI signal. This takes persistence. The signal is inconsistent, depending on location. But by 1:30, I’m back online, in a lobby with hardly anyone around, and am able to speak for a half-hour with my clients in NYC. I follow up with some other business, plus texts and emails with my eldest daughter. I make it to the pulmonary function lab at exactly 2:30.

More waiting. The lab tech needs to make a call, so I squeeze in another text response. Now for the tests. She reviews the procedure, which I’ve done many times, and begins instructing me to first breathe normally into the tubing attached to diagnostic equipment, then take a big breath in, push it all out and another big breathe in. It’s physically challenging for me, and requires mindful awareness of what constitutes a full breath in and a full breath out. As we’re running the test, she chats with another tech who is making a phone call.

Then a doctor—I assume, he’s wearing a white lab coat and the techs wear blue scrubs—steps into the open doorway. We’re repeating the test, the tech is waving her hand in a sine curve to indicate I should continue normal breathing, I’m trying to focus on what I’m supposed to be doing, and he’s telling her that there’s an issue with her quality scores for some research study that they’re involved in. He continues to discuss this with her as she defends herself and interjects verbal and visual cues to me—when to push out, when to breathe in.

Finally he leaves. Time for a break between tests. She realizes she forgot to set up the next test correctly and needs to recalibrate the equipment. She’s obviously flustered. I try to say something reassuring. I field another text from my daughter as we wait. We talk about our children, about texting, about staying in touch. I feel awkward for her. How humiliating, that her superior would give her critical feedback while I’m sitting there. And how uneasy it makes me feel, wondering if she knows what she’s doing, though she certainly seems to. And how ridiculous, to be conducting that conversation while we’re engaged in a diagnostic that requires concentration.

But of course, we all multitask. It’s a given, right?

Later, much later, after I’ve driven home through Friday afternoon traffic and have finished all the record-keeping, follow-up emails and return phone calls, and I can finally forget about work and relax over Shabbat dinner, I pause and notice—the pink peonies and purple irises in a blue ceramic vase, the white candles flickering, Ginger’s steady panting under the table, the smell of warm challah and sweet potatoes and baked cod. So good to slow down and just be. So good.

Photo Credit: mr.beaver 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.

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.

Photo Credit: Nicholas_T 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.

Shall We Dance?

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When I was in ninth grade, I talked my best friend into taking a modern dance class together. We met one afternoon a week in the gym of a nearby elementary school, where we wore black, short-sleeve leotards and danced to Crosby, Stills & Nash’s Wooden Ships.

The opening moves involved balancing on your right foot, with your left leg bent to the side, toe touching right knee, your arms raised and hands pressed together to form a diamond shape around your head, as you swayed back and forth. This I can barely do anymore. But I still remember the dance, leading the front row in a recital, jumping into an impromptu rendition at a friend’s pool party when the song floated into the mix, moving with ease and grace to the music.

I always wanted to take dance lessons as a kid, but our mother, like most of her generation, was not interested in playing after-school chauffeur or paying for multiple classes. I had violin lessons, and that, in her book, was enough. So, as an adult, I began to make up for lost time and took a dance class here and there–intro ballet, a little jazz, even some disco back in the early ‘80s. At some point in the ‘90s, Al and I took a few ballroom classes.

Still, I was just dabbling. Every time I’d go to a dance performance, I’d daydream about being up on stage. But my body was getting stiffer and weaker, from scleroderma and a general reluctance to exercise. I’ve never been athletic or very coordinated, and about my only exercise, for years, was trying to keep up with my growing daughters.

Things were getting so bad that I was beginning to hunch up like a little old lady, always hugging myself against the cold that causes my Raynaud’s to flair. So about five years ago, I had a talk with my rheumatologist about how I really needed to get regular exercise. He advised me to pick something I really loved doing, because I’d have an easier time sticking with it.

My first step was Pilates, which has become a weekly life saver, strengthening my core and improving my flexibility and range of motion. Then I decided to try and dance again.

I started with an evening intro jazz class at a North End Boston studio. It was a near disaster. The class was far from introductory, more like an advanced beginner level. The teacher was beautiful, very talented and rapid in her instructions. The other students memorized the floor movements and combinations easily. I could barely get my body to move the right way, let alone remember all the steps. It wasn’t just my lack of experience or weak muscles. My brain simply couldn’t hold all the information and communicate it to my arms and legs.

At the end of the first class, I went to the teacher and started crying, because I so wanted to dance but found it so confusing and difficult. She listened sympathetically and gave me some great advice: Don’t compare yourself to others. Focus on one thing each class to improve. This is about your personal best. It takes time to learn.

For the next two years, I kept at it, switching to a class run by the studio director that was a bit slower and more to my liking. But still, even as I loved the music and moves, jazz was just a bit more than I could handle. So I decided to switch to a basic modern class at a different studio, this time in Cambridge. This worked well for several sessions. Whereas jazz, like ballet, embodies flight, modern is all about gravity. Fewer leaps. More feeling your weight, connecting to the floor.

And yet, after a couple more years, I found that I still couldn’t keep up. Too much balancing on toes and one foot. As my feet have deteriorated from scleroderma, the fat pads have thinned significantly, and I just can’t put that kind of pressure on the balls of my feet. Even slipping a pair of soft orthotics into an old pair of jazz shoes wasn’t enough to help me balance.

So for the past six months, on Thursday nights in Cambridge, I’ve been taking Middle Eastern belly dancing. Now, it took me a while to try. I’d been contemplating the idea for at least a year. There are so many lewd stereotypes about belly dancing that I had to get past. But I was drawn to the form by the basic fact that, at an intro level, it doesn’t involve balancing on your toes. And I liked the music. And it sounded like fun.

My expectations have been met, and then some. The music is great. My teacher is a wonderful dancer and performer, very experienced, excellent at breaking down the many isolation movements that are part of this most graceful and sensual art form. By the end of the hour, I’m usually sweating from the workout. It dovetails well with Pilates to strengthen my core muscles.

Best of all, I’m beginning to be able to move my body in ways I could have never imagined were still possible. I can snake my arms and wrists. I can swirl a veil. I can do figure-eights and hip bumps and shimmies. I can feel the music and move with the rhythm. And I feel good about my full figure (belly dancing is the one form of dance that rewards you for those extra inches).

In fact, it’s that last point that is perhaps the most important. Scleroderma is a disease that locks up your body, distorts your face and hands, and makes you feel ugly. Belly dancing, reconnecting with your sensuality, is about as far from that as you can get. I can’t think of a better antidote.

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.

Strong Bodies

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Thighs like small boulders, wasp-waisted, she approaches the platform. The young Olympic athlete dips her hands in resin, claps, strokes her chalked palms back and forth over the steel barbell weighing 94 kilos—207 pounds—shifts from one foot to the next, then back again. The horn blasts. She clenches her jaw, squats, yanks the barbell up to her shoulders, strains to stand. But the weight is too heavy. She dumps it, thud, leaves the podium, head low.

She returns a second time, still cannot make the clean and jerk. Her coach drapes a jacket over her slumped shoulders. Other women in her weight class, with equally muscular bodies, have hoisted the barbells high. But I feel for her. I can barely imagine what it takes to grasp a weight that heavy and lift it even an inch off the ground, let alone heft it overhead.

The Olympics are contests of perfection. Swim and track meets are lost by hundredths of a second. Gymnasts fail by degrees of perpendicularity. Divers are dropped for splashing.

And yet. How extraordinary are those strong, perfect bodies. What amazing feats of stamina, coordination, speed and strength, even by those who never make the final eight. Whenever I watch the Olympics, especially the summer games, I’m always amazed—and a bit jealous. At no point in my life, healthy or not, was I athletic enough to entertain a glimmer of hope that I could be like that.

Or so I thought. Every year in high school gym class, dressed in our light blue bloomer jumpsuits, we would tumble and stumble through two weeks of gymnastics. It was always my favorite unit, though I was terrified of the beam (especially since we had to balance in sneakers, which, of course, made it impossible to feel or grip the narrow wooden span).

I loved the parallel bars, felt exhilarated when I could do a flip or a penny drop. I flew over the vault, throwing my legs cleanly across the padded horse and landing firmly. And I amazed my teachers and astonished myself when, one day, I shinnied all the way up one of the thick, scratchy ropes that dangled from the gym’s high ceiling and touched the top. Me, the shrimpy first chair violinist who was afraid of heights. I wrote it all off as a fluke.

Now physical challenges are so much harder. But I’m in better shape today, even with scleroderma, than I was 10 years ago. I take Pilates every Monday night and a dance class on most Thursdays, stretch each morning and walk Ginger in the afternoon. I want to look and feel my best as I age, and I don’t want to give in to my disease. The latter has proven to be a powerful motivation, more than vanity and my own drive for perfection.

I want to be strong. I know I need to be strong to fight scleroderma. Living with any chronic illness involves a willingness to accept limitations, but I keep pushing the envelope to find out which limitations are real and which are just obstacles of my own making.

Sometimes I wonder what my health would have been if I’d had that attitude back in high school and pushed harder to be athletic. If I hadn’t assumed I was a klutz. If I hadn’t bought into negative stereotypes of female jocks.

But it’s far too late for that, now. So I keep working out and take great pleasure and, yes, pride in discovering that my body still responds well to physical exercise. And I watch the summer Olympics, daydream what it would be like to be a competitor—and cheer for the losers who keep on trying.

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.

Monday Night Pilates

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We’re lying on our backs, the four of us, each on a black padded platform carriage called a reformer, our legs extended at 45 degrees, our heads and shoulders curved forward, straight arms pumping alongside our torsos, hands in straps that pull against a combination of springs and our own body weight, doing The Hundred.

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Welcome to Monday night Pilates. Our instructor calls out the count. We pump and breathe in unison, shew-shew-shew-shew-shew, trying to keep our backs imprinted flat against the platform, trying to move our arms without moving the carriage, trying to suck in our guts and keep our legs up and not strain our necks.

I’ve been taking Stott Pilates for about four years now, ever since I decided I was losing range of motion and hunching my shoulders so much to keep warm that I was beginning to look like a little old lady. I’ve worked my way up from introductory mat classes to the reformer, which looks a bit like a medieval torture contraption. But I actually like the workout—especially once our hour is done.

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My classmates range from forties to seventies, all moderately fit, and we enjoy kvetching and an easy camaraderie as we sweat and strain. Our instructor, a former Air Force Academy gymnast and competitive ice skater, is just the right combination of tough, precise and caring. She pushes us to the point of exhaustion, but also offers me creative modifications for any move that my joints won’t allow me to do.

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Halfway. Around this point my head feels like it weighs a ton and I struggle to keep it raised. But I keep pumping. And wondering, why am I doing this to myself? I used to hate gym.

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But the workout is essential. If I miss a week, I feel it the next. And if I miss two weeks, I start feeling crummy. Keeping my joints moving and my muscles strong and my posture aligned make a huge difference in my ability to get through the day, sleep well at night and stay positive about my health and whatever other stress I’m managing.

Plus, it makes me feel mighty. I never exercised seriously growing up. Here I am, 57 years old, with all sorts of crazy ailments, and I can kick butt. Sort of.

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I stare at my thighs and wonder why, with all this exercise, I can’t get rid of the cellulite. Pump-pump-pump-pump-pump. My neck feels like it’s going to snap. Our instructor always says we can put our heads down if we need to, but I don’t want to cave.

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Almost there. Keep going. Sometimes she forgets the count and skips a set of ten. No such luck tonight.

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We bend our legs to a table-top position and squeeze our bodies like a fist, then, relief, roll our heads down and lower our feet to the platform.

I adjust the platform tension and check the clock on the wall. Half-an-hour to go. Next, front rowing, bicep curls, tricep presses, I’m getting stronger, my muscles are shaking, shew-shew-shew-shew-shew.

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.