Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

Pep Talk

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No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols

Tending Barre

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Around New Year’s, I decided to shake up my exercise routine and join a community fitness center—to access a greater variety of classes, to use the fitness equipment, to break up my work day with a workout.

Good intentions. But, to be honest, I’ve been less than diligent about going. I’ve had plenty of excuses. It’s been way too cold out. I don’t like changing in and out of exercise clothes in the middle of the day. I’m too busy.

Then there have been a few mishaps as I’ve tried to find my place—like killing my knees in a Zumba class and getting short of breath in a “Senior” exercise class. The latter experience left me mortified (can’t they call it something else?), but it was a serious workout and I arrived late, didn’t warm up enough and started feeling faint during the aerobics portion of the class. I recovered, but not without scaring my instructor. Later in the day, I received a thoughtful follow-up email from the fitness center director to be sure I was okay and to suggest a few more options.

Really, the big issue is being careful that I don’t accelerate into strenuous aerobics too quickly, which seems to trigger what my physicians suspect is stress-induced pulmonary hypertension. But it spooked me, and I wasn’t sure what to do.

Then I discovered Barre Exercise. I’ve always loved dance, and over the past ten years, I’ve taken jazz, modern and Middle Eastern belly dancing. As my feet have become more sensitive, I’ve had to cut back. It’s very hard to keep my balance on the balls of my feet as the fat pads have significantly thinned out due to scleroderma.

But this class uses a ballet barre. So I have something to grab onto.

It’s been many years since I took a basic ballet class, and I am no Pavlova. But I had forgotten how much I enjoy the form and grace of ballet movements. All the Pilates classes have paid off. I know how to align myself and engage my core. And I still remember the fundamentals—foot placement, arms, the essentials of a plié, tendu, dégagé, coupé, attitude, battement. I can’t quite hold my balance in an arabesque, but I can approximate the position.

The workout is quite intense—deceptively so, because each movement is limited and controlled. But I work up a sweat, and the cold room no longer feels cold after about 15 minutes. The pacing works, so I can keep up with the aerobics without getting short of breath. And there is plenty of stretching at the end.

Most of all, I actually feel graceful. This is the best part. My range of motion has been so constricted over the years by this disease that the fact that I can actually make a beautiful shape with my body is astonishing and wonderful. I leave the class feeling refreshed and a little more confident each week.

I still need to figure out a way to get myself to the center more often. I know I should probably do the treadmill or stationary bike to build up my aerobic endurance, even though the prospect is boring as all get-out. I’d like to find another class that I enjoy. But at least I’ve been able to tap my inner dancer, once again. Whatever my physical limitations, this is what I always return to. 

Photo Credit: quinn.anya 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.

Fitness and Starts

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It’s official. I’m fit. Well, sort of.

In keeping with my New Year’s resolutions, I decided to shake up my exercise routine, which had dwindled to a Pilates reformer class once a week plus morning stretches, and joined a local health and fitness center last week. As part of my new membership, I took a mini-fitness test, to determine my baseline.

After about a half-hour of various activities, including taking my blood pressure, recording my weight, measuring body fat, testing my strength and flexibility, and walking the treadmill, plus running all the results through a complicated formula, it was determined that I’m in pretty good shape, overall.

Not bad for a 60-year-old woman who’s had scleroderma half her life.

Now for the qualifications. Resting heart rate, aerobic fitness and blood pressure are all in the fit-to-excellent range. This came as a huge relief, because I do face some real challenges if I have to accelerate rapidly from 0 to 60, related to exercise-induced pulmonary hypertension. I’ve had some pretty frightening episodes of running to catch trains over the past couple of years that left me struggling for breath. One of my top priorities is to improve my aerobic fitness as well as determine my limits, so I can make better decisions about when I can push myself and when I can’t.

What I need to work on most, not surprisingly, are building up my strength and improving flexibility. (No, that’s definitely not me in the photo. Just wishful thinking.) And the old body-fat-to-muscle ratio could use some work, too, even though I’m on the thin side. Nothing like menopause to make all your body fat sink into your hips and thighs.

So, now the question is, what exercises to do to get stronger and regain whatever flexibility is possible? With the help of fitness center staff, I went through all the equipment and figured out what my routine should be. The center director, after reading up on scleroderma, reviewed classes with me and made recommendations. The next day, I tried out a group class that was a mix of yoga and Pilates, set to music. Over the weekend, I recovered.

The big advantage of this arrangement is that I can go to the gym whenever I want to work out, and most of the classes I’m interested in are in the late morning—well-suited to my work-at-home arrangement and very appealing in the winter, when going out at night seems overwhelming because of the cold.

The flip-side disadvantage is that I no longer have a set class schedule—so I have to be sure to plan ahead and make an appointment with myself to go exercise.

Despite muscle fatigue and some tender joints by week’s end, I did notice three major plusses:

  • The treadmill workout woke up my brain. I really felt much more clear-headed afterwards.
  • I slept better after I exercised. I’ve always noticed this, but it was quite striking after both days of visiting the gym.
  • I had more spring in my step. This was also surprising.

All encouraging signs, enough to keep motivated as I figure out what I really enjoy the most. As one of my rheumatologists once told me years ago, exercise is essential to my health and well being, but I need to find something I really love, in order to stick with it.

For someone who used to hate gym class in high school, I guess I’m making progress. It’s about time.

Photo Credit: QuinnDombrowski 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.

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.