resilience

Coat Check

Evelyn Herwitz · April 28, 2015 · 4 Comments

Would someone please explain to me, when it’s still 50 degrees out, why stores are out of coats? I know it’s the end of April, but we’re far from the dog days of summer here in New England, and I don’t do all my shopping online.

I discovered this strange fact of retail seasons over the weekend when I went hunting for a coat to replace my old spring/fall standby, which I’ve worn for at least ten years and is looking its age. I had a simple mission: find a shorter, wool coat that will keep me comfortable during transitional weather. Apparently this is something I should have thought of last August.

When I walked into a local Burlington (formerly Burlington Coat Factory, an off-price retailer specializing in outerwear—where I bought my now-ratty coat a decade ago), I encountered racks of summer shifts and prom dresses and all kinds of sports clothes. But where were the coats?

I asked a sales clerk. She brought me deeper into the store and showed me a few aisles amidst all the other clothes. “It’s the end of our coat season,” she said. “You’ll find the smalls over here.”

Did I mishear? I thanked her and went to look. There was one rack of small coats—including left-over winter jackets, a few raincoats and a collection of picked-over styles that clearly weren’t going anywhere. I walked around to the other side. All mediums. The next row were large and plus sizes. That’s it.

How could this be? I came here because of the coats. It can snow here in April. I know everyone else is running around in shorts and flip-flops because the sun is out, but I’m still cold, dammit!

So I started picking through the rack. I tried on long coats and short coats, designer labels and unknown brands, black, taupe, camel’s hair, red. Nothing looked good. They were either too big or too long in the sleeve or too wide in the back or too tight. Another woman was sifting through the rack, and we commiserated.

I was about to give up my quest when I discovered the clearance rack, with a few smalls mixed in with the rest. And there, hiding between an ugly black wool duffel and another black coat with a garish brash zipper, was a chocolate-brown-wool Calvin Klein trench, mid-thigh. I tried it on. The back didn’t ripple or buckle. The sleeves were roomy and didn’t bind. The pockets were in the right place, easy for my hands. I liked the color and the cut. And it cost only $55. The only drawback was the fact that the sleeves were a bit long, but I figured, at that price, I could always have them altered. Meanwhile, they’d keep my hands warm.

So, I bought it. One of life’s little victories. I’ll be wearing it when the rest of the world is going barelegged, but at least I’ll have style.

Photo Credit: Doug Ellis via Flickr

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.

Another Year Older

Evelyn Herwitz · April 21, 2015 · 2 Comments

I had a wonderful teacher in the first grade. Her name was Miss Kelly, and she had short, curly dark hair, a wide oval face and a big smile. She also seemed quite tall, although I wasn’t a reliable judge of height at that age. And she created fun class plays.

Crane Beach That year, we performed what would now be described as karaoke. Picture a group of six-year-olds singing and pantomiming on stage to musical hits, circa early Mad Men, and you get the idea. (“How come everyone is laughing?” I remember wondering during our performance.)

I haven’t thought of that first grade play in years, but for the past couple of days, one of our songs arose, unbidden, from the recesses of my gray matter and has been cycling through my head—Sixteen Tons, sung by Tennessee Ernie Ford.

You load sixteen tons, what do you get
Another day older and deeper in debt. . . .

It was my birthday on Saturday. Fortunately, the debt part isn’t what brought the song to mind. But another day older is how I felt, for better or worse.

“Are you excited for your birthday?” Mindi asked me a few days before.

“I don’t know. I guess so,” I replied. After turning 60 last year, 61 seems a bit anti-climactic. And there’s something about adding the 1 to the 60 that tipped the scales toward the “older” side of the equation.

When the day arrived, however, I was in a great mood. Something magical always happens to me on my birthday, a feeling that the day is different, special, blessed. The weather was perfect—70s, sunny, azure sky. Flowers that had been hiding for months suddenly dotted lawns up and down our street. On my walk back from Shabbat services at our synagogue, I noticed violets, always a spring favorite.

That evening, to celebrate my birthday, Al and I drove to a dinner concert in a small town in northern Worcester County, at a restaurant venue that draws class acts from around the country. The show did not disappoint: Michael Allman, son of Gregg, performed amazing R&B and Allman Brothers’ classics with Charles Neville of the Neville Brothers on tenor sax and Jeff Pitchell, an outstanding blues guitarist. I was transported back to my freshman year of college, when Sweet Melissa, Midnight Rider and Whipping Post blasted from stereos in every dorm.

Continuing my birthday weekend the next day, after brunch with friends, we drove an hour-and-a-half to the North Shore, to Crane Beach, beautifully maintained by the Trustees of Reservations, a great conservation organization here in Massachusetts. It was chilly, the water was a deep blue and the air, crisp. But I’d forgotten my hiking shoes in our haste to leave, I should have brought an even warmer coat than the one I had, and the latrines were—well, gross is an understatement.

So I was pretty cranky as we set out on our beach walk. I love the beach in any weather, but I couldn’t appreciate it, at first. After grousing to Al as we walked a ways, I plopped down on the sand while he explored closer to the water (he, of course, was quite comfortable walking barefoot while I was all bundled up and still chilly) and lay back to absorb some sunshine.

The break helped lighten my mood. Soon I was exploring patterns in the rocks and the soft shadows left by footprints in the sand. I took some pictures. Al strolled ahead to inspect what was beyond the next curve in the shoreline. We passed other spring beach-lovers, some in winter jackets and walking shoes, others in shorts and flip-flops. I drew my layers closer to ward off the stiff breeze and kept on walking.

Al noticed a path leading up the side of the dunes, with a boardwalk. At first, I was hesitant to climb, but curiosity got the better of me, so up we went.

Well worth the effort, as the path led to a grassy expanse overlooking the ocean—blue and green and tinged with beige above sandbars—and a nearby island. When we turned around, we realized that this was the view at the bottom of a sweeping lawn that extended from the hilltop Crane Estate, part of the Trustees of Reservations property.

As we hiked back down to the shore, I began to feel a bit tired. The wind was still stiff, and we had to walk into the breeze all the way back. By the time we finally reached the boardwalks leading to the parking lot, I was really dragging. We made a brief stop at an antiques store (overpriced) on our drive through a nearby town, then found a local restaurant a few blocks away for dinner.

Waiting for our meal, I was quite weary. “Are you okay?” Al asked. “I think so,” I said, though I wasn’t really sure. I was worried. Here we had just walked the beach for a few hours, and I was totally spent. We’re planning a trip to Europe this summer, with an aggressive travel itinerary, and all I could think of was—how am I going to keep up with what I want to see and do?

The meal revived me, though I could only drive half the distance home, and had to trade off with Al after we got on the Mass Pike. “I’m feeling my age,” I told him.

It wasn’t until later that night, after I had showered and gotten ready for bed, that a light bulb went off in my head: It’s hard to walk in sand. It takes a lot of extra energy, especially when you’re wearing the wrong shoes. And it was cold out, and it’s even more tiring for me to walk into a chilly headwind. Yes. Indeed.

So I stopped catastrophizing about our trip, at least for now. I do have to pace myself when I’m physically active. That’s the bottom line. But I can do it. I have to believe that.

In our first grade class play, the one other song I remember singing was I Whistle a Happy Tune from The King and I. We each had a partner, and we took turns singing and trying to whistle along to the music. I’m sure we looked adorably hilarious for all the parents in the audience, but I took it all quite seriously, as only a six-year-old can:

Make believe you’re brave
And the trick will take you far
You may be as brave
As you make believe you are . . .

Yes. Indeed.

Spring Tide

Evelyn Herwitz · April 14, 2015 · 2 Comments

Passover is over and the endless winter has actually ended, with only a few stubborn patches of snow remaining. On Sunday, with temperatures hovering in the ’60s, Al suggested we go to the beach. “Great idea!” I said.

So we packed a lunch for the drive and set out for the South Shore, to a coastline we had never explored along Buzzard’s Bay. It was nippy by the water, and I needed all the layers I brought in the car, but so wonderful to see the ocean again. There’s nothing like sea air to clear the senses. Summer can’t be too far away.

Please join me on our hike at Nasketucket Bay State Reservation. . . .

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

Priceless

Evelyn Herwitz · March 17, 2015 · 6 Comments

This January marked 30 years since I first met my rheumatologist. Al and I had just married a few weeks earlier. My internist had set up the appointment because my fingers had swollen so much, for no apparent reason, after we ordered our wedding rings, that my ring was too tight when we picked it up at the jeweler’s.

Blood work revealed a positive ANA. I didn’t really know what that meant—that my immune system was attacking healthy tissue—and I almost cancelled the appointment because it seemed like a waste of time.

But that January day, my new rheumatologist explained to me with compassion, patience and insight, chances were that I had either rheumatoid arthritis, lupus or scleroderma. I was in total shock, completely unprepared for such a serious set of options. He answered all my questions, took all the time needed to help me absorb the frightening news. I went home very shaken, but I trusted him.

We were both in our thirties, then. He’s still my go-to guy here at home, complementing my rheumatologist at Boston Medical Center—another wonderful doc who is also now in his sixties. I trust him implicitly, too.

Both of them have followed me for decades, listened to all of my anxieties about this very complex and scary disease, given me excellent advice, understood my aversion to new medications, my fears of hand surgery, my many worries about what’s next. They have encouraged me, cheered my forays into dance classes and Pilates, empathized with my pain from infected ulcers and praised me for my meticulous hand care.

They’ve also given me hard advice that I’ve needed to hear—like the reality check after I gave birth to Emily that it would be far too risky, despite my postpartum delusions about how great it would be to have more babies, to go through it again. “You were really sick,” my hometown rheumatologist told me, straight out. Of course, he was right. I had developed pre-eclampsia at 34 ½ weeks, and by the time I was in labor, my kidneys had shut down and my blood had nearly stopped clotting.

My BMC rheumatologist was the one who pushed me to take exercise seriously in order to stay strong and retain as much range of motion as possible. “Find something you love to do,” was his wise counsel. “That way, you’ll stick with it.”

At a recent visit in Boston, the two of us were joking about the indignities of being mistaken for seniors—but still wanting the senior discount. It will only be a few years until we’ll both be legitimately eligible.

So, in the back of my mind is a new worry: What will I do when these two wonderful physicians, who have been so much a part of my life in coping with this awful disease, finally decide to retire?

It’s no small concern. I know there are other excellent rheumatologists around who are younger, well educated, experienced and will provide fine care. But it won’t be the same.

These two men don’t simply know my diagnosis, blood work, X-rays, pulmonary function tests, echocardiograms, medications, allergies, long history of infections, difficulties with infusions and all the other data points that make up my megabites of digital medical records. They know me. And they genuinely care about me—and I, them.

At some point, I will have to make a transition to a new dynamic duo. I must trust that each of them will hand off to another rheumatologist who will provide a comparable level of excellent care. I’ve been very fortunate to have found them both. I hope my luck will hold, because my scleroderma shows no signs of retiring at 65.

In the meantime, I hope each stays in good health and decides, despite all the frustrations of practicing medicine these days, to stay with it, and with me, for a long time to come. In a health care system where so much is measured by dollars saved, a trusting friendship with your physician who’s helped you manage a long-term, chronic illness for decades is nothing short of priceless.

Photo Credit: audreyjm529 via Compfight cc

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