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Pep Talk

Evelyn Herwitz · June 16, 2015 · 4 Comments

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 clear 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

If the Shoe Fits

Evelyn Herwitz · May 12, 2015 · 2 Comments

Nearly every day of the past year, rain or shine, snow or heat wave, I have been wearing the same pair of shoes—my trusty black Merrell clogs. They are lightweight, the fabric breathes, they work well with my custom orthotics and they go with many of my casual clothes. As the fat pads in my feet have thinned from scleroderma, my shoe options have become significantly limited, and I’ve adjusted my style accordingly.

But I still wish I could wear a nice pair of shoes—albeit flats, since heels are now out of the question—with better dresses and skirts. Plus, it’s hard to go dancing in clogs.

Last week, on a whim, I went searching online just to see what else is out there, and was rewarded by a new find: Vionic. These shoes are designed by a podiatrist. They have proper arch support and very comfortable, removable insoles—you can substitute your own, if you wish.

Best of all—they’re stylish. Finally, shoes with good support that don’t look like tugboats on my feet.

I bought three pairs—tan loafers, black sneakers and pink thong sandals. The first two arrived just in time for me to bring them along to my podiatrist appointment and ask him to retrofit a couple of sets of orthotics. He was duly impressed by the insole that comes with the shoes—designed to correct pronation, so you don’t mess up your knees and ankles.

Even with the adjustments he made to my orthotics, I realized after experimenting that the loafers are more comfortable with the insole that comes with the shoe. Amazing.

I still love my clogs. They’re the most comfortable shoes I own, and the most reliable for driving long distances (my feet swell when I sit for any length of time).

But the loafers hold up well for walking on the street and standing for extended periods. The sneakers are so lightweight and flexible that they feel like slippers. And the sandals provide excellent arch support. Plus, they’re fun. You can’t help but smile wearing pink sandals with little sequins on the strap.

Vionic also makes ballet flats. I’ll have to wait for these until I pay off my credit card. But just the idea that there might be dress shoes I could actually wear is enough to hold me for now.

I realize there are many more pressing issues in the world than whether I can have a few different pairs of attractive shoes. But when you’re living with a disease that continually constrains your options and ability to look your best, this is news worth celebrating.

I refuse to give in to looking older than I am or frailer or more disabled than I need to be. When it comes to scleroderma, dressing well is one of the most important ways I know to fight back. It’s not about being narcissistic. It’s about giving yourself the good care and mental boost that you need to keep going.

Tending Barre

Evelyn Herwitz · March 31, 2015 · Leave a Comment

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

January Blues

Evelyn Herwitz · January 13, 2015 · Leave a Comment

Are we there, yet? I mean, springtime. Not even halfway through January, and I’ve had enough, already. I know, I know. Central Massachusetts is not North Dakota or the Yukon or Siberia. My heartfelt sympathies if you live anywhere nearby. But I really, really hate this.

Last week, the Arctic Vortex, or whatever you want to label evil cold weather patterns, sucked all the warmth out of the air. True, we’d been spoiled by unseasonably balmy weather prior to that. But days in the teens and nights in the single digits are not my idea of a good time.

On Thursday, the worst day of all, I decided to brave the cold, regardless, and spend it as planned in Cambridge. This required some strategizing.

I was taking the train to Boston. But Wednesday evening, I realized that neither I nor Al had cash for my ticket, which I had to buy on the train since there is no active ticket counter at our station. I did not want to have to go to the bank on the way, because it was going to be minus-20F windchill and I was not going to try to manipulate the outdoor ATM from my car or leave my car any more than necessary to enter a building. What to do?

Then I remembered my “T” app on my iPhone. Easy-peasy. All I had to do was purchase the MBTA commuter rail ticket and activate it when I got on the train. Just in case we lost Internet service in the morning due to the extreme cold (like I said, I was in high strategy mode), I made my purchase that night. The app came in handy the next morning, too, when I made sure the train was running on time.

My next challenge came Thursday morning. As I confessed last week, I had damaged both Al’s and my car with a back-up mishap that required a new bumper for my Prius and a repaired door on his Civic. My work was completed Wednesday evening. When I went into our garage, I immediately realized:

a) my car reeked of paint fumes; and
b) I had left my car key in the house because Al had driven it back from the body shop.

This required a scramble with the house key, which I managed to drop on the garage floor and struggled to pick up because, well, I can’t easily pick up flat metal objects. So I had to take off my gloves to pry it from the floor. Which made my fingers numb. I said a few choice words.

Once I finally started the car, I knew I was going to have to drive with the window cracked or risk feeling nauseated by the time I got to the train station. On the coldest day of the year. So I cranked up the heat, opened the back passenger window an inch and set forth.

Fortunately, my Prius has a great heater.

For once, I actually got to the train station with enough time to walk to the train without rushing. Ours is a huge, turn-of-the-20th-century station from the grand era of rail travel, so there was no problem waiting indoors instead of on the platform. And, as it turned out, the train pulled in just as I left my car in the open air garage. So I walked through the garage to the station garbed in two layers of sweaters, a wool shawl, wool pants, leg warmers, my heavy down coat, shearling hat, insulated gloves, poofy hood and a warm scarf to hold it all together. I looked ridiculous, but then again, I’m so used to looking ridiculous in weather that most people don’t consider cold that it didn’t really matter. Plus everyone else was bundled head-to-toe, too.

Fortunately, the heaters on the train worked. We pulled out of the station with the car’s front doors stuck open, but a hardy passenger got up from his seat and closed them, since the conductor was nowhere to be seen. I spent the next hour-and-a-half working on a client project on my laptop, very pleased to be riding and not driving in what proved to be horrible traffic, from what I could see on the Mass Pike Extension as we neared Boston.

The worst part of my trip was the walk from the train platform into South Station, bitter cold. Once inside, it was tolerable on the way to the Red Line. My next excursion outdoors—from the Red Line exit to the inside of a Marriott where I waited for my friend to pick me up—left me a bit queasy from breathing frigid air, even through my scarf, but the feeling passed once I got in the building.

Reversing the trip later in the day, I was glad I hadn’t let the bitter weather get the better of me. I relaxed into my seat on the train, noted the horrible traffic westbound on the Pike Extension with smug satisfaction, then returned to working on my novel for the rest of the ride home. My Prius still smelled like paint fumes, even after airing out in the station garage all day, but the heater kicked in quickly enough so that I could crack the window on the short drive to our house and still stay comfortable.

Best of all? When I pulled into our driveway, it was just barely sunset at a quarter to five. The Ice Man may still cometh, but at least the days are getting longer.

Photo Credit: Sangudo via Compfight cc

Photo Shoot

Evelyn Herwitz · September 23, 2014 · 2 Comments

On my desk, next to my computer screen, rests a black-and-white photo of me at age three, my braided hair in white satin ribbons. I’m wearing a plaid dress with puffed sleeves and a white Peter Pan collar, holding what I think was a stuffed toy deer, sitting in a folding chair in the back yard of our home. Like most little kids, I loved having my picture taken, and I’m grinning happily at the camera.

Not so, now. I don’t know at what point I began to hate having my picture taken. Probably sometime around the seventh grade when, like most teens, I started to feel too self-conscious about my facial flaws. Many women I know feel this way—we’re all far too aware of our imperfections in a society that values Photoshopped perfection.

But scleroderma adds a whole new level to my camera shyness. Recently, I needed an updated portrait. So I asked a friend who’s a good photographer if he would do the honors. We did the shoot outside in about 10 minutes, as he zipped through digital shot after digital shot and kept me laughing.

The next day, he sent me a set of images to review, most of me grinning at the camera. But as I scrolled through, my heart sank. Oh. My. Even after all these years with scleroderma, it is really hard to see how it has distorted my face. Friends who know me don’t notice, because I’ve had the disease for so long that the way I look is all they know.

But for me, it is still a shock. Although my skin has loosened somewhat with time, excellent medical care and a dose of serendipity, it remains abnormal. My wrinkles are not the fine lines and soft creases of my 60-plus contemporaries (even as I’m grateful to have wrinkles, because when the disease was worse in my 30’s, my face was tightening to the point that it was uncomfortable to blink). Rather, because my skin is still thickened, my wrinkles resemble corduroy welts of varying widths. My mouth is tight around my broad smile. The nostrils of my generous nose are narrow. My eyelids are too thick to open fully.

In short, I look a whole lot older and odder than I think of myself. I don’t care about the salt-and-pepper hair. I still have my teeth (well, at least, most of them). Maybe it was the natural lighting, which can be quite unforgiving. But. Wow.

One of the hardest things about this disease is how it damages your looks. It is deforming. There is just no way around it. When I look at myself in the bathroom mirror, I often am not wearing my glasses, so the impact is softened—a bit of self-delusion, perhaps, but it also makes me feel better.

The reality is, I’m always still hoping against hope that I’ll get my face back. I wonder what I’d look like without scleroderma, just normal aging. What would it be like to once again have a relaxed mouth, a nose that isn’t pinched, eyelids that open all the way? What would it be like to have gentle lines rather than deep creases?

I know this ruminating is both self-defeating and self-absorbed. Beauty is only skin deep, and all that. But there is a real loss involved here, and it takes a long time to make peace with the fact that scleroderma ages you prematurely and is so unkind to whatever lovely features you may have once had. You need to dig deep to summon self-respect and compassion for who you are, for all that you are, despite damning social standards.

In the end, I selected the most forgiving image and forwarded it on. The pictures told the truth. This is how I look. The contrast between what was and what is remains in my head, and those whom I love and who love me don’t care.

Friday evening, I sat on the living room couch as Al gave me a much-needed neck massage—too many hours at the computer. I told him about the photos. “I look so old,” I said, discouraged.

“You don’t look old to me,” he answered, softly. For some men, this would be a throwaway line. But not Al. He meant it. And that made all the difference.

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