Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Monday Night Pilates

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We’re lying on our backs, the four of us, each on a black padded platform carriage called a reformer, our legs extended at 45 degrees, our heads and shoulders curved forward, straight arms pumping alongside our torsos, hands in straps that pull against a combination of springs and our own body weight, doing The Hundred.

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Welcome to Monday night Pilates. Our instructor calls out the count. We pump and breathe in unison, shew-shew-shew-shew-shew, trying to keep our backs imprinted flat against the platform, trying to move our arms without moving the carriage, trying to suck in our guts and keep our legs up and not strain our necks.

I’ve been taking Stott Pilates for about four years now, ever since I decided I was losing range of motion and hunching my shoulders so much to keep warm that I was beginning to look like a little old lady. I’ve worked my way up from introductory mat classes to the reformer, which looks a bit like a medieval torture contraption. But I actually like the workout—especially once our hour is done.

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My classmates range from forties to seventies, all moderately fit, and we enjoy kvetching and an easy camaraderie as we sweat and strain. Our instructor, a former Air Force Academy gymnast and competitive ice skater, is just the right combination of tough, precise and caring. She pushes us to the point of exhaustion, but also offers me creative modifications for any move that my joints won’t allow me to do.

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Halfway. Around this point my head feels like it weighs a ton and I struggle to keep it raised. But I keep pumping. And wondering, why am I doing this to myself? I used to hate gym.

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But the workout is essential. If I miss a week, I feel it the next. And if I miss two weeks, I start feeling crummy. Keeping my joints moving and my muscles strong and my posture aligned make a huge difference in my ability to get through the day, sleep well at night and stay positive about my health and whatever other stress I’m managing.

Plus, it makes me feel mighty. I never exercised seriously growing up. Here I am, 57 years old, with all sorts of crazy ailments, and I can kick butt. Sort of.

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I stare at my thighs and wonder why, with all this exercise, I can’t get rid of the cellulite. Pump-pump-pump-pump-pump. My neck feels like it’s going to snap. Our instructor always says we can put our heads down if we need to, but I don’t want to cave.

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Almost there. Keep going. Sometimes she forgets the count and skips a set of ten. No such luck tonight.

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We bend our legs to a table-top position and squeeze our bodies like a fist, then, relief, roll our heads down and lower our feet to the platform.

I adjust the platform tension and check the clock on the wall. Half-an-hour to go. Next, front rowing, bicep curls, tricep presses, I’m getting stronger, my muscles are shaking, shew-shew-shew-shew-shew.

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.

Why I Don’t Eat Meat but Still Wear Leather Shoes

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Living amidst abundance, graced with super-sized supermarkets that devote an entire aisle to the vast variety of mustards and ketchups Americans supposedly crave, we struggle with the luxury of choice: What to eat?

Years ago, I decided, out of religious commitment, to follow Jewish dietary law and keep a kosher home. No more ham-and-cheese sandwiches or shrimp cocktails. I didn’t really miss the forbidden foods, and the discipline gave my life needed structure and spiritual focus. In recent years, I’ve added a new requirement: stay away from meat.

In part, my reasons involve how my scleroderma makes it harder to eat meat. This is personal. There is, to my knowledge, no definitive research about the best diet for people with scleroderma.

I’ve simply learned over the years that if I ate red meat, I’d wake up in the middle of the night with indigestion and reflux. Sometimes, I’d aspirate the reflux and sit bolt upright out of a deep night’s sleep, gasping for breath. Not worth it, even though I used to love brisket.

I also find red meat difficult to chew and swallow. I’ve had a few decayed molars extracted because I can’t open my mouth wide enough for my dentist to fill cavities in the back. Sluggish esophageal motility has more than once caused me to gag on meat that I couldn’t chew completely. So, dense foods are problematic. But I have zero interest in pureeing my food, as some recommend. There are plenty of creative, nutritional alternatives for these issues without resorting to pablum.

Those are the pragmatic considerations. My decision to eliminate all meat from my diet is also ethical, inspired by my daughters while they were still in high school. Mindi, our oldest, was the first to disavow meat after learning how animals are abused when raised for slaughter. Emily, our youngest, came to the same conclusion about a year later after attending a week-long seminar on animal rights.

Between hearing what they had learned and expanding my repertoire of nutritious vegetarian meals for growing adolescents, I decided they were right. The cons simply outweighed the pros. An added benefit, going vegetarian significantly simplified our kosher kitchen, since we now only needed one set of dishes, instead of separate sets for meat and dairy.

That said, I am not a vegan, nor am I a pure vegetarian. I still eat fish because of the health benefits of anti-oxidants, but I’m seeking affordable resources for fish caught in the wild. I also take fish oil every day, which has significantly helped me fight colds.

And I still wear leather shoes. My feet are difficult to fit and require custom orthotics, because the fat pads have thinned due to scleroderma. There simply aren’t enough comfortable vegan shoe options with removable insoles, made from materials that breathe and won’t cause my skin to break down. So, this remains a compromise.

For me, the shift toward vegetarian eating has been an evolving process. The first step was giving up pork and shellfish, and separating meat from milk, as a daily reminder of my religious values. This is the next major ethical step I’ve made in redefining my diet.

I have friends who are vegetarian purists, who won’t eat “anything with eyes” and who won’t wear leather. I admire their commitment.

But even as I try to honor the rights of all living creatures, hoping to do my part to create a humane world, I also need to put my health first. Without it, I’m no help to anyone, least of all myself. So, for now, I’ll stay away from meat, but keep eating fish and wearing leather shoes. Not the ideal solution. Not yet.

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.

Dropping the F-bomb

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Whenever I smash one of my fingertip ulcers—reaching for a faucet, reaching for the gear shift, reaching for a doorknob, any time I’m rushing and not paying attention—I curse.

And the only curse that works is the f-bomb. It’s short, explosive and foul. It’s the best way I know to discharge my anger and diffuse the intense, sharp pain.

My fingertip bones are severely resorbed, so the tips are jagged. When I hit an overlaying ulcer, it’s a double whammy of banging a deep sore on the outside and stabbing it from the inside. Even with my bandages, which provide a little cushioning, it hurts like hell.

But oh hell doesn’t cut it.

I also curse when my hands won’t do what I want.

A spoon slips through my grasp and hits the floor. F-bomb.

Coins slide out of my palm and scatter. F-bomb.

It takes five tries to pick the coins off the floor. F-bomb.

I can’t grab a knife from the flatware tray and have to pry it out with another utensil. F-bomb.

It takes ten minutes to align the zipper pull and zip up my winter coat. F-bomb.

I have a battle with shrink-wrap and the shrink-wrap wins. F-bomb.

I drop my cell phone getting out of the car and the back falls off into the sewer (yes, this really happened once). F-bomb.

Sometimes, when I’m cooking a big meal for company and getting tired and things start slipping out of my hands—like a potato I’m peeling or an onion I’m slicing—I don’t simply drop the f-bomb, I start throwing utensils into the sink and slamming drawers and yelling about how the counters are too cluttered and there’s no place to put anything. My family knows enough to stay out of the way.

I try my best not to curse when others are around or within earshot. I don’t want the f-bomb to creep into my everyday conversation and contribute to the decline of civil discourse.

But I hate this disease. Even though I’ve been living with scleroderma for three decades, and most of the time I can manage quite well, it really gets to me some days. I hate the way it’s wrecking my body. I hate how it’s robbed me of activities I love. I hate all the bandages, the ulcers and infections. I hate all the trips to various doctors and all the waiting in waiting rooms and all the medications. I hate discovering yet one more bizarre complication, like the fact that the roots of my molars are resorbing or the time the left side of my face went numb and I thought I was having a stroke and had to go to the ER and learned that I had an inflamed trigeminal nerve that the ER doc diagnosed as trigeminal neuralgia, which fortunately turned out not to be the case. It was “just” a rare neurological issue associated with scleroderma.

There’s no polite way to put this: When your body craps out on you, it sucks. And with a disease like this, you’re stuck knowing there’s no cure, for now, probably not in your lifetime, and even if, God-willing, there is a cure, your body’s too damaged for it to make a difference, and your health is only going to get worse.

Like aging.

When my sister and I were kids, our family used to travel by overnight train from New York to Cincinnati to visit my grandparents every December. Inevitably at the big family gatherings, all the adults would start complaining about their latest physical ailments. We’d sit on the side and snicker to each other, “When are they going to start passing around their X-rays?”

Fifty years later, I find myself engaged in those same conversations with my friends all too often. The older we get, the more stuff malfunctions, breaks and hurts. It’s shocking when it starts. We all know that our bodies are going to give out and we’re going to die someday, but we don’t really want to believe it until our mortality slaps us in the face. I’ve just been battling the inevitable much longer than most of my peers.

So I guess I have something of an advantage in the how-to-cope sweepstakes. But that doesn’t help on days when my house keys slip through my fingers and I drop the package I’m carrying as I try to pick them up and have to take off my glove to grasp the keyring but it’s too cold and my fingers go into a Raynaud’s spasm.

Then the only thing that works is dropping the f-bomb.

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.

Winter Cometh

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It’s been an unusually mild winter here in Massachusetts—not counting the freak snow storm we had back in October that damaged so many trees and knocked out power for days throughout the Northeast.

In fact, we’ve had a whole lot of weird weather this year—including a tornado, an earthquake and a hurricane-turned-tropical-storm. Anyone who doesn’t think there’s something strange and disturbing happening to the climate is either in deep denial or a Republican presidential candidate. But I digress.

Now it’s finally getting cold. We had about an inch of snow late last week and another four over the weekend. Temperatures are well below freezing at night and pretty brisk during the day. And I’m beginning to want to hibernate.

Going outside in New England winters is always an expedition for me. I need to bundle up big time to keep my Raynaud’s in check.

Every day I put on my leg warmers and wrist warmers and sweaters and fleece vest and whatever other layers I need to stay warm in the house, plus all the external layers when I venture outside. I end up looking like an eskimo half the time that other people are sporting mid-weight coats or jackets. I used to feel ridiculous, but now I don’t care what anyone thinks. It’s just what I have to do.

And all those layers can have unanticipated benefits. Last Friday afternoon, I had finished my work for clients and was wrapping up a first draft of this post when our 13-year-old golden, Ginger, insisted on nose-batting my hand away from the keyboard to tell me it was time to go for a walk. Since I’d been writing about contending with the cold, I decided she was right.

So I put on my deep-tread walking shoes, my warmest down coat, my shearling hat and my down mittens, and we headed outside. As we walked along our snow-packed street, a dozen high school girls from the nearby prep school jogged past, clad in thin black leggings and ski jackets, ponytails bobbing.

I pulled up my hood against the wind. Warmer now, I didn’t mind Ginger pausing to inspect each lamp pole on our leisurely trek around the block. As we rounded the corner back toward our house, we stopped to let the runners jog by again. A straggler ran past. Farther down the block, another labored to catch up.

Then Ginger skidded on some ice. My feet flew out from under me and I fell flat on my back, banging my left elbow and whacking the back of my head on the icy road.

The second straggler ran over and offered me a hand. I thanked her, got up on my own and walked, shaken, with Ginger back home. Nearly thirty hours later, I’m feeling mostly back to normal, no longer spacey, no more mild headache, just some strained muscles. And I’m sure I was spared a concussion by my thick hat and down hood. Not even a bruise on my elbow, thanks to all the padding.

One of my rheumatologists always used to ask me, only half-joking, why I wouldn’t move to San Diego. I’d quip that I wouldn’t be able to stand the air conditioning. After this weekend, and whenever I feel stuck in a January deep-freeze, I’ll admit the idea has some appeal. But.

This is my home. It’s been my home for more than 30 years, now. Yes, it gets too cold. But I have dear friends here, Al’s family within a hour’s drive and a tight-knit synagogue community. I have an outstanding team of physicians who know me and my history really, really well. I love the scenery and four seasons, even the snow. I love my home. Our daughters grew up here. My parents and Al’s parents are buried here. We have roots.

All of that is very hard to replace. And the stress of adjusting to a new community, the amount of time and effort involved in building new relationships, aren’t worth a warmer climate (especially given all the extreme weather of late—for all I know, if the oceans do rise, we may end up with beachfront property someday here in Central Massachusetts).

So, for now, I’ll continue to stay put. And buy a pair of ice cleats.

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.

Whatever You Do, Don’t Treat Me Like an Invalid

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Years ago, when I first learned that I had one of three possible auto-immune diseases—either rheumatoid arthritis, lupus or scleroderma, pick your poison—I was terrified. I knew RA could be crippling, and I knew that lupus had killed one of my literary heroines, Flannery O’Connor, at 39. I’d never heard of scleroderma, but the more I read, the more overwhelmed  I felt.

Al and I were newly married, and we were both in shock by my emerging diagnosis and how my body was changing. For a wedding present, knowing I wanted to get back to playing music after a decade of dormancy, Al had my violin repaired—the fallen sound post repositioned, the bridge straightened and the strings replaced. But the first time I picked it up, I realized that I could no longer wrap my fingers around the neck or press on the strings, let alone flex my wrist for bowing.

As my hands got stiffer, my joints became more inflamed and I felt more and more exhausted, the simplest tasks—like pulling on a pair of socks or filling a pot with water and placing it on the stove—became difficult and painful. One weekend, out of the blue, I  experienced a sharp pain with each breath; a trip to urgent care revealed pleurisy. Sensitive to cold from childhood, my fingers and toes now flickered numb throughout the day. I still didn’t have a definitive diagnosis, but my rheumatologist correctly suspected scleroderma.

Neither of us knew how to talk about it. When we first started dating, Al’s mother had warned him that I seemed too fragile. Now it appeared that her words were a harbinger of disaster. We sought help in couples therapy, which opened the lines of communication. But we were both still scared.

When we got together with friends, I would inevitably pick the brains of any health care professional in the crowd (of which there were many, all of them supportive and very concerned). This was before the days of the Internet and before there was much detailed information about scleroderma available to the general public. Al went with me to a scleroderma support group, but I found it depressing rather than uplifting, so I quit after several sessions.

Friends and family were concerned and tried to be helpful. But the reality was that scleroderma is so strange and obscure, that no one had a point of reference. Our physician friends were aware of the severe risks, but they couldn’t predict the course, any more than my rheumatologist.

I soon discovered that, despite everyone’s best intentions, most people really didn’t want to hear about it. We were all in our thirties, friends were having children and building their careers, and most were quite healthy. I was a newlywed the second time around, desperately wanting this marriage to work, facing my mortality. Not the stuff of social banter.

If I did start to share, I would typically get one of several reactions:

People would listen but soon get distracted or change the topic because they couldn’t deal with it. Or they’d listen and then tell me about someone else they knew with an even worse condition, perhaps as a way to relate my predicament to their own experience, but it always made me feel unheard. So I’d shut down.

People would try to offer advice. This was always well-meaning, but most of the time was of no help, since they didn’t really want to take the time to understand what I was dealing with because it was so threatening. So, again, I’d shut down.

People would feel sorry for me and try to mother me with their concern. Of all the reactions, this was the worst. If there is one thing I can’t tolerate, it’s being treated as an invalid.

While I appreciate the underlying compassion, I never want to be handled as if I can’t do for myself. Ultimately, that level of smothering concern is more about the helper’s need for control over the unknown than the helpee’s need to be cared for. It completely undermines the fighting spirit that’s so essential to managing this and any other chronic disease.

There’s a fine line to be tread here, of course, because I also have had to learn to ask for help. There are many things that I can’t do easily anymore, and I’m no longer ashamed to be assertive in requesting assistance.

But my family and closest friends all know by now how important it is to me to continue pushing back, managing this complicating disease, outsmarting it, accepting it, running with it, on my own two feet.

Al, to his great credit, has never babied me, even when sometimes, in weaker moments, I wished he would. For the 27 years we’ve been married, with scleroderma as our third partner, he has always helped me when needed, but never expected less of me than I do, myself. And that has been one of my most powerful medications.

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.