Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Another Year Older

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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 BeachThat 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.

Crane Beach EstateAl 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.

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.

Spring Tide

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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. . . .

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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.

Imagine

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Passover this past weekend was extra special. A few hours before we were scheduled to begin our seder on Friday night, we learned that one of our cousins received the all-clear on her lymphoma, following six months of chemotherapy. There were big hugs all around when she and her family arrived for dinner.

A central theme of the seder is retelling the story of the Israelites’ Exodus from Egypt, as if you, personally, were escaping from slavery to freedom. The word in Hebrew for Egypt is Mitzrayim, which means “a narrow place.” So the metaphor had exceptional resonance at our table that evening, and again Saturday night, when we repeated the seder at our cousins’.

Then, on Sunday, I learned that the beloved husband of a childhood friend had died the day before of ALS. They were married only a few short years. The words of comfort I shared with her seemed so shallow compared to her loss.

Our bodies can betray us in so many ways.

There are never any guarantees that a treatment will work for a particular disease for any given individual. I am profoundly grateful that our cousin has responded so well to chemo and is on the path to full recovery from cancer.

My friend’s husband, however, had no such options. ALS has no cure, although research is progressing to identify the genetic underpinnings of the disease and treatments that may slow the deterioration of nerve cells.

According to the ALS Association, about 30,000 Americans may have the disease at any point in time. By contrast, figures from the American Cancer Society project more than 1.6 million Americans will be diagnosed with one of the four major forms of cancer this year—colon/rectal, lung, breast and prostate. And that’s not counting the myriad of other ways cancer can attack our bodies. No wonder a preponderance of research dollars go to finding a cure for “the emperor of all maladies.”

Scleroderma research for a cure faces similar hurdles as ALS research. With Congress deadlocked over basic federal spending issues, let alone medical research for rare diseases, the need to find other resources to support this important work has never been greater.

Where could it come from?

Here are some mind-blowing figures:

It’s not that we as a nation don’t have enough money to support medical research for rare diseases. It’s just a matter of priorities and the need to make a commitment, as a society, to be responsible for each other’s well being and not only for ourselves.

Imagine, for a moment, what it would be like to live in a country where we spent more on finding a cure for scleroderma or ALS or any number of horrible, painful, debilitating diseases than we do on all those half-eaten snacks that get tossed in the garbage.

Imagine.

Then please consider donating to the Scleroderma Research Foundation or the Scleroderma Foundation—or to the ALS Association.

Thanks for listening.

Photo Credit: a.s.ya 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

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.

Crowning Glory

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At long last, ten months after I had to have a painful molar extracted, I finally have a full set of teeth. Nasty old 19, which nearly ruined a weekend vacation in New York City last May, has been replaced by an implant.

None of this has been fun. My scleroderma creates many complications for dental work, especially much difficulty opening my jaw wide enough for my dentists and hygienists to manipulate all the probes and pics and suction tubes and needles and pliers needed for the various steps in the process.

Despite the fact that the roots of my molar had resorbed to the point of exposing the nerve—a rare complication of scleroderma—pulling the damn thing out of my jaw was quite the ordeal last spring. My periodontist, whom I trust implicitly, had to drill it into pieces and extract it by segments, because the roots just didn’t want to let go.

After my gums healed up, the next step was a bone graft. Then setting in the foundation for the implant. All of this required long visits, a lot of Novocaine, and much pulling and stretching of my lips and cheeks, which don’t have much give. Plus months for my gums to heal, in-between. 

Finally, in February, I was ready to go back to my dentist and get impressions made for the crown. He, like my periodontist, understands how hard it is for me to keep my mouth open wide and is always as careful as can be, apologizing whenever I wince. But there’s just no getting around it—even when he uses the smallest tray for the impression or whatever, it hurts. I always feel like my lips or cheeks are about to tear.

Last week, my new 19 arrived. I went to the dentist Wednesday afternoon, looking forward to getting it over with, at last, and being able to chew thoroughly once again—without taking twice as long as normal (which is long enough already) to eat a meal. My dentist tested the placement three times, made adjustments and set in the molar. But when the cement dried, it had settled too close to the next tooth, so he had to jigger it a bit so a piece of floss would pass between the two teeth.

When I left, I noticed a crunching sound inside the molar when I bit down, but I told myself it was okay. I enjoyed chewing a piece of gum—on both sides of my mouth—on the drive home. But by evening, it was clear that the crown was loose. I could click it with my tongue. Saliva was pooling under the base. The left side of my tongue was really sore from all the poking and prodding earlier that day.

So on Friday, I made another 80 mile round trip, back to my dentist, to have the crown reset. I was frustrated, but there was no point in getting angry about it. I can’t open wide, and that makes it much harder for my dentists, no matter how good they are, to do what needs to be done.

Fortunately, this time, the procedure was successful. Ninenteen is now firmly in place. My tongue has healed up from the second round of poking and prodding, and my inner cheek has gotten used to feeling a tooth instead of a gap. I’m still relearning how to chew on the left side. I can’t sense food through the crown the way I can with a real tooth, so it’s taking some practice.

We’re still catching up with all of the dental bills, too. Insurance only covered about a fourth of the $7,500 total—better than nothing, certainly, but still. Talk about sticker shock.

But I can chew again. You don’t realize how important each tooth is until you lose one. Missing that molar has increased the risk of gagging on food, which happened far too many times over the past ten months. I’m grateful that I have excellent care, that I’m able to work my schedule around all these appointments, and that we’re managing to pay for it. There will undoubtedly be another tooth that needs replacing at some point in the future, but, with any luck, it won’t be any time soon.

Meanwhile, pass me the biscotti.

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.

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