Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Status Report

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Al and I were catching up with friends recently, all of us in our 60s, when the conversation inevitably turned to everyone’s health and the aches and pains that have become all too common with age. I listened, but didn’t say much.

DCF 1.0Then one friend, whom we haven’t seen in quite a few years, turned to me and asked about my health. He remembered when I was first diagnosed, decades ago, and how I had no idea at the time which way it would go.

I explained how scleroderma affects everyone uniquely, and that, although it was complicated, mine was the slow-moving variant. “You seem to be doing really well,” he said. “I’m glad for you.”

He was, of course, being thoughtful. I appreciated his reflection that I look well. But the whole exchange caught me off guard. It surprised me that he remembered those early years, which are now such a distant memory for me—and that this remained how he thought about me.

Even as I deal with my scleroderma every day and write this blog every week, it is not top-of-mind when I describe what’s going on in my life, nor are the details of my symptoms conversation-starters, especially with people I haven’t seen in a long time. It’s there, in the background, ever-present, a force to be reckoned with—but not what defines me. Not by a long shot.

Thirty years ago, when I first became aware that I was dealing with some form of autoimmune disease, it was different. I was terrified and very anxious about what was wrong with my body and the prognosis. I remember cornering friends who were physicians and picking their brains. I’m sure I talked about my health to anyone who would listen. There was so much to process, and the information available at the time was quite limited to the most dire of outcomes.

Within the first year or so, however, I began to pull back. No one outside the medical profession knew anything about the disease, and most of our friends, then in their thirties, were healthy and could not relate to what it meant to have a chronic illness. So I kept to myself. Al was the only person who really knew what I was going through. I sought support and insight from therapists. I commiserated with a couple of friends with their own chronic health challenges, who understood. In fact, over the next few decades, I barely spoke at all about my scleroderma in public.

When I decided to write this blog, nearly four years ago, I realized that I had become so circumspect that it was difficult even to say the word “scleroderma” to anyone other than family, medical professionals and a very few close friends. I felt so self-conscious and awkward about it that when someone inquired about all the bandages on my fingers, I would just mutter something about having chronic ulcers. But I realized that I needed to come to terms with my disease, and the best way for me to do that was to write about it and share the experience with fellow travelers.

After writing thousands of words on the subject, I’m finding that living with scleroderma is no longer a threatening concept or something that I’m embarrassed to mention in a conversation or ashamed to identify as a significant part of my world. Rather, my scleroderma is just there. It’s not the totality of who I am or how I want to be remembered. I wish it would go away, but it won’t. So after three-plus decades, I’ve come to accept it as a part of me and what has made me who I am today. That’s all. Nothing more, and nothing less.

This is my 200th post. To those of you who have followed since the beginning, and to those who are newcomers, I’m sure you’ve noticed that I don’t strictly stick to the specifics of scleroderma—for all the reasons cited here. Living with scleroderma is not just about the details of a complex disease; it’s also about living fully. That’s my personal goal, and that’s what I hope to reflect on here. Thanks for listening.

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.

Image Credit: José A. Warletta

Machu Picchu

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Ever since Al and I went to Europe this past summer, I’ve been dreaming of our next trip. No specifics, yet, just a yearning to see more of the world.

machu-picchu-1369310-640x480Like Machu Picchu in Peru. My podiatrist was telling me about his recent visit while he worked on my corns and calluses and ingrown toenail last week⎯a somewhat helpful distraction, as my feet are incredibly sensitive and this was otherwise not a fun appointment.

He described the ancient Incan ruins in a similar way that I’ve heard from others⎯a very spiritual space, beautiful, fascinating history (albeit tragic, given the fate of the Incas as a result of the Spanish Conquest). And he shared pictures on his iPhone, of extraordinary vistas and smiling llamas. Only a five-and-a-half hour flight from Miami.

Very intriguing. Except for one problem. The altitude is about 8,000 feet. My podiatrist is a big, muscular guy, and had no issues with altitude sickness (for which he was quite grateful). He said he was running around like a little kid, he was so excited to be there. But some people on the trip got very sick and needed oxygen.

How would I manage that altitude (assuming we could even afford the trip, which I haven’t bothered to check) with my scarred lungs? The highest mountain I have visited, as best I can recall, is Mount Washington in New Hampshire, just over 6,000 feet. The body begins to react to altitude right around 8,000 feet. Lack of oxygen can cause fatigue, loss of appetite, trouble sleeping and other issues.

There is also the risk of infection from water supplies that are not treated. I have enough issues with bacteria getting into my ulcers here at home, let alone in a place where you can’t drink the water. How would I keep my hands clean?

Right now, of course, this is all just a pipe dream. I know there are ways to acclimate your body to altitude, gradually, and there are medications that can help. I’m sure there are strategies for hand hygiene, if I were determined enough to figure it out.

But there is also the reality of scaling my travel ambitions to my body’s limitations. There are so many places I’d like to see, on every continent. Even Antarctica. In December, the temperature on the Antarctic Peninsula is about the same as it is here in New England (yes, I’ve checked). Going to Antarctica is the closest you can get to an experience akin to going to the Moon.

Not all of those dreams are possible, health-wise or financially. So, I’ll continue to explore options, right now from the safety of my computer screen. I don’t know where we’ll travel next, and it probably won’t be Machu Picchu. But it will be someplace exciting, inspiring and a push outside my comfort zone. Of that, I am determined. It’s the only way to keep growing.

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.

Image Credit: Julio Sedano Acosta

Ghoulish

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It’s less than two weeks until Halloween, and my neighbors are ready. As I took my walk this weekend (no small feat, given that the temperature plummeted into the 40s and I really had to push myself out the door), it seemed as if holiday decorations had sprouted overnight.

OLYMPUS DIGITAL CAMERAThere were pumpkins, of course, and cornstalks and potted chrysanthemums in autumn hues, along with gauzy cobwebs wrapped around shrubs. But the big trend this year appears to be lawns planted with miniature tombstones. Forget the little orange lights. Mocking death is all the rage. One neighbor even had three human-size skeletons crawling up their house.

The ghoulishness is intentional, of course, and done in a playful spirit. Nonetheless, I find it ironic, to say the least. We as a society invest so much money and effort trying to avoid and hide the realities of illness, aging and death, that it’s startling to see homes decked out in ersatz graves. Perhaps it’s just one more form of denial. If you make death a joke, it can’t get you.

That impulse is as old as humankind. But as Halloween becomes more commercialized and deathly decorations become more ubiquitous, just another way to jumpstart the Christmas shopping season, the butt of the joke—our very mortal vulnerability—becomes trivialized.

We all live with numbered days, whether we want to admit it or not. Those of us who  live daily with chronic disease are significantly more aware of our mortality, often at a younger age, than those who have the good fortune of excellent health. It’s easy to make light of death when it still seems far off.

This is not to say that death is not fair game for humor and a sense of the absurd. Our ability to laugh at the things that frighten us the most is one of our greatest wells of resilience.

I simply don’t see the point of pretending there are dead bodies buried in your front lawn or some poor soul hanging from your maple tree. (I noticed the latter as we drove along a country road on Sunday, and for a split, horrified second, I thought the fake, stuffed body was real.) It not only fails to amuse me; I find it disquieting that someone would mount a skeleton on their house without thinking about what it really symbolizes.

Maybe I’m just getting crankier as I get older. Maybe it’s just getting too cold and too dark, too soon, as we head deeper into fall.

On the other hand, imagine what good could be accomplished if all that money spent on promoting and buying ridiculous Halloween decorations were invested into serious medical research to find cures for rare diseases like scleroderma. Now, that would be a reason to celebrate.

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.

Image Credit: Cathy Smith

Moose Tracks

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Last Friday, a moose found its way to a street in our neighborhood, a few blocks from our house. It was clearly lost, an adolescent with only the beginnings of antlers, wandering past Colonials and Capes, trying to find its way back home.

(If you can’t see the embedded video, click here to see it on YouTube. Video by A. Stephenson, 10-2-15.)

I missed all the excitement, but apparently the moose caused quite a stir, galumphing across busy streets, passing near the campus of Worcester Polytech, and eventually disappearing somewhere into the woods. Police and animal protection services followed it all day without capturing it. The moose got away, but not before it made the evening news in Boston.

Friends were talking about it over the weekend, sharing a video of the wayward moose on YouTube. People interviewed on the TV report smiled with excitement at the idea of seeing a moose strolling through the city. For a brief moment, we all forgot our adult worries and cares. Just the notion of a moose on the loose—harmless enough as long as it didn’t cause any property damage or car accidents—turned us all into little kids.

Somehow this seemed a fitting end to a week that began with a lunar eclipse. Viewing conditions were perfect here the previous Sunday, as we stood outside with friends and watched the moon transition from a brilliant spotlight in the dark night sky to a copper penny. As we gazed skyward, we sang Moon River and Shine on Harvest Moon and Moon Over Miami—every moon song we could remember.

A sense of wonder is a powerful antidote to all the sad, bad, upsetting news in the world. There is always more than enough to worry about—another school shooting, extreme weather, wars, disfunctional politics—and, closer to home, the day-to-day pressures of work and challenges of managing my health.

Then there is the big annual adjustment to fall. Cold, rainy weather this past week dampened my mood. Back to sweaters and leg warmers and layers, wool coats and hats. I turned on the heat pumps for the first time in months and made oatmeal for breakfast. I tried not to think about the winter ahead.

So it was refreshing, once the rain finally ended, to go out for a walk and retrace part of the path that the moose had followed, which is along my normal route. No signs of the recent visitor, but the maples are beginning to turn the color of a lunar eclipse. Acorns and small red crabapples carpet the sidewalks and streets. I noticed a squirrel digging in a flowerpot on a porch, as a dog inside barked madly. It made me laugh. I’m not sure why. Something about the innocence of it all—squirrel taunts dog, dog gets upset, squirrel ignores it and keep doing its thing.

A moose wanders down a quiet city street, looking for home. No one shoots it, except with a video camera. No one captures it. It dodges traffic and disappears into the woods, without a trace.

I wish I’d been there to see it pass by.

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.

52 Pick-up

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Sunday was one of those Goldilocks-and-the-Three-Bears kind of September days—not too hot, not too cold. Just right. The sun was shining, the sky was blue, the air had a crisp edge and there was a pleasant breeze. Perfect weather for combining exercise with a fun outing—a mile-and-a-half walk to the annual fall arts-and-crafts street festival in my hometown.

chalk heartAl and I set out around 2:30 with a goal of finding a wedding present for some young friends who are getting married next month. As we walked along shaded streets, he noticed a plastic strap, the kind that binds packing boxes, lying near the curb. He picked it up.

“Please don’t collect any more litter until we’re on our way back,” I said.

“I have a halo,” he said, placing the packing strap around his baseball cap. I had to laugh. We continued on our way.

Al makes a habit of cleaning up litter wherever we go. This used to drive me crazy, but I’ve made my peace with it—just his way of being a good citizen and tending the planet. He’s promised me he won’t pick up cigarette butts or food. And he washes his hands thoroughly when we get home. This is the one piece I insist on, so he doesn’t pick up germs or spread them to my hands.

Soon we reached the street festival and poked around hundreds of booths selling jewelry, photos, ceramics, skirts sewn from recycled T’s, henna painting, candles, soaps, jams, weaving, hand-spun wool, recycled sweater mittens, hand-turned wooden bowls and more. We ran into friends. We watched a fencing exhibition, a West African dance demo, a juggling unicyclist. I stopped to draw with sidewalk chalk. We found a wonderful local artisan whose woodworking we admired for the wedding gift. Al bought a ceramic snail; I found a burgundy fabric purse for evenings out.

On the way back, Al pulled out the plastic shopping bags he’d stuffed in his back pocket and began picking up litter. There was no shortage. Plastic water bottles were abundant. He scooped up soda cans, cigarette cartons, aluminum pastry trays, plastic bottle caps, random bits of paper, nips bottles. I started spotting for him—a plastic bottle stuck in a stone wall, a whisky bottle, lids from drinks. Really, it’s astonishing when you start paying attention, how much trash people toss on the street without thinking about the consequences. I’m sure a cultural anthropologist could draw some interesting conclusions. But, basically, a lot of people are just plain careless.

We moved to the side to let a couple pass us on the sidewalk. “That’s so great that you pick up litter!” said the woman. “Thank you!”

Al just smiled and kept going. He separated recyclables from garbage and emptied one plastic bag in a park garbage can along our way, then refilled the bag as we walked. By the time we got home, he had collected dozens of bottles and cans for our recycling bin and more trash for Monday morning’s pick-up.

I commented that there was hardly any litter on our street. “You’ve probably picked it all up!” I said. Al laughed. He went straight to the bathroom sink and washed his hands with plenty of soap. He’d lost his halo earlier. But, not.

Gotta love him.

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.