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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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medication side effects

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Evelyn Herwitz · September 11, 2012 · 2 Comments

Twenty-four years ago yesterday, I was sitting with my 91-year-old Grandma Elli on her upstairs front porch in Cincinnati, overlooking a tree full of ripe apples. It was the Shabbat before Rosh Hashanah, and we were talking about life. I didn’t know this would be the last time I’d see her before she would die that December of congestive heart failure. And I didn’t know that back in Massachusetts, a fair-haired baby girl with big blue eyes had just arrived, a baby who would transform our world.

Al and I had been trying to adopt an infant for nearly eight months. The previous April, a year-and-a-half earlier, we had proudly announced to our family around the Passover seder table that I was about six weeks pregnant. Within days I began to bleed and had a miscarriage. It took weeks to get over the loss, but I was determined to keep trying.

Over the summer, however, I began to experience a weird sensation in my wrists, like a rubber band stretching whenever I flexed. My rheumatologist called it a friction rub and told me we needed to stop trying to get pregnant. He was concerned that my scleroderma, suspected but not yet confirmed, was getting worse and that I was at risk of kidney failure in the third trimester. I trusted him, but I didn’t want to believe him.

We decided I should get a second opinion. I went to the University of Pittsburgh Medical Center to see a scleroderma expert. She was compassionate but forthright—I was on a dangerous trajectory with scleroderma and needed to go on medication that would cause birth defects if I got pregnant. I came home scared and distraught. But there was no other rational choice except to take the best shot at saving my health.

The High Holidays came and went. Al found me a fuzzy black puppy with a white star on her forehead and white sock paws. We named her Sukki, and she gave me comfort. But I was still depressed by the progress of my disease, which was crippling my hands and causing much fatigue.

One evening that winter, while I was lying on the living room couch, staring at the wallpaper, Al sat down next to me. We should try to adopt, he said. I wasn’t sure. I didn’t know what would be involved. How could we afford it? How would we find a baby? How long would it take? Would I be able to handle being a mother with my scleroderma? I felt like my body was failing me in so many ways, and I was terrified.

In my gut, though, I knew he was right. We began the adoption process shortly after, on Tu B’Shvat, the Jewish New Year of the Trees. Months passed with no leads. When Passover came around again, six months after I’d begun my prescribed course of D-penicillamine, I noticed that creases in my forehead had reappeared. I joked that I was the only 34-year-old woman in the world who was happy to have wrinkles.

Every night and every morning, I’d pray for a baby who needed us as much as we needed her or him. Summer came and went. After my return from Cincinnati, on the High Holidays, we both prayed with all our hearts for a child.

The day after Yom Kippur, a Thursday, I was getting supper ready when the phone rang. It was our social worker calling to tell us that he had found us a baby girl. As I hung up the phone with trembling hands, I heard Al’s car in the drive. I raced out in stocking feet to tell him the news.

The next four days were a blur of friends bringing over everything we could possibly need for our new baby. A crib materialized and a dresser, a changing box, clothing, toys, books, even a potty chair. Al and I took Sukki for a hike in the woods over the weekend and were so excited that we got lost, found our way to a road and hitched a ride from a kind passerby several miles back to our car.

Sixteen-days-old, Mindi arrived in a hand-knit pink sweater and bonnet that Monday, the first day of Sukkot—a festival of ancient harvests and lessons about God’s constancy in our transient existence. The pizza’s in the car, our social worker quipped as we answered the door.

And there she was, our beautiful, mysterious baby girl. We cuddled her and fed her, changed her diaper and laid her down for a nap in our friends’ borrowed white cradle. Al and I looked at each other as she slept and wondered, Is that all she does?

Little did we know.

Among the many things we have learned from Mindi over the years, perhaps the most important is this: Every child, however she becomes yours, is a human being in her own right, not a mini-Me. And this: Adoption is a challenging course. Along with the profound joy of creating a family, it brings the heartache of deep loss and an intense struggle for identity.

I have told Mindi that I am a much better parent because of her. She has forced me to stretch beyond experience, to question and discard pat answers to parenting. Always one step ahead of me, she has taught me to doubt snap judgment, take a step back and trust her to manage for herself.

Soon, she will be returning to her job and friends in Tel Aviv, with plans to come back to the States next fall for graduate school. On this anniversary of September 11, as the saber-rattling grows louder over Iran’s nuclear capacity, I’m trying not to worry. The world is a dangerous place, but we all have to let go of our adult children, ready or not, and believe in them and their ability to thrive on their own.

The Talmud teaches that parents must instruct their children how to swim. Bright, adventurous and resilient, Mindi is a strong swimmer. I’m grateful. I’m incredibly proud of her. And I’m going to miss her very much.

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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Filed Under: Body, Mind Tagged With: adoption, faith, friction rubs, Jewish holidays, medication side effects, parenting and scleroderma, resilience

Music of the Spheres

Evelyn Herwitz · January 6, 2012 · 2 Comments

I woke up around 5:30 one morning this week to the sound of intermittent electronic chirping. At first, I thought it was my husband’s beeper. Occasionally Al, a hospital social worker, is on call for ethics consults.

But the sound was coming from the hallway outside our bedroom. Alas, it was our smoke detector’s low battery alert. Important, yes, but not my favorite way to wake up. So I stumbled out of bed, grabbed our TV remote and shut off the damn thing. (And, yes, made a mental note to replace the battery.)

If only I could do the same for the constant ringing in my ears. I’ve had tinnitus for a couple of decades now, ever since I tried a course of Trilisate to relieve joint pain.

A compound of two salicylates—derived from salicylic acid (which is the basis for aspirin), derived from salicin, the natural analgesic found in weeping willows (which made willow bark one of Hippocrates’ curatives)—this anti-inflammation drug also causes tinnitus in about 10 percent of users.

I was one of the lucky few to have the medication damage the tiny hair cells in the cochlea of each ear, my right worse than my left. The result is a constant ringing that has become more pronounced and annoying in recent years.

The noise has become loud enough that I had begun to worry it was affecting my hearing until, one night, when Al was snoring and I couldn’t sleep, I put a pillow over my head and could still hear him quite clearly plus every little creak in the house, along with the ringing. So, at least for now, that’s one fear allayed.

Lying in bed, trying to get back to sleep after shutting off the chirping smoke alarm, I was instead swamped by the ringing, which (as any one of the millions who live with this condition knows) is always worst when everything around me is quiet.

So, being a writer, I decided to listen to the sound and try to describe it. Our radiators began hissing. Similar, but not quite. It’s a rushing noise, but also a ringing. But not quite a ringing. More like a a very high pitched, constant, tinny tone. But not quite constant. It ebbs and flows within a narrow range.

If it weren’t so annoying, the sound would be etherial. It reminds me of space audio—radio emissions from the planets in our solar system, collected by the passing Voyager and Cassini satellites, and converted to sound. The recordings, made by physicists at the University of Iowa, are fantastic, bizarre, eerie and cool. My ringing best approximates the sounds of a Jovian chorus, without the clicking.

And that’s how I’m trying to deal with my tinnitus. Like my scleroderma, it’s there. I can’t stop it, so as long as I have to live with it, I might as well make the best of it as an otherworldly internal concert—my personal music of the spheres.

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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Filed Under: Hearing Tagged With: medication side effects, tinnitus

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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