Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Take Me Out to the Ball Game

· · 4 Comments

Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.

The Random Factor

· · 2 Comments

Every morning, once I’ve worked the kinks out of my joints, made the bed and done some stretching, I wash my hands and sit down with manicure scissors, clippers, nail file, tweezers, ointment, bandages, wound dressing and moisturizer to tend my fingers. I pick and nip any shreds of dead skin, clip nails that have split or splintered at the corners, file away rough skin patches and inspect for signs of inflammation. Then I treat and bandage any open ulcers and slather on moisturizer, rubbing and wringing my hands over and over until the skin no longer feels sticky.

This is how I try to protect myself from the world—all the inevitable bumps, bangs, cuts and bruises, as well as all the nasty germs that could invade my body through cracks in my skin, inflicting pain and havoc.

It takes time, this daily ritual, sometimes five minutes, sometimes a half-hour, depending on what I did with my hands the day before, how well they have healed in moisturizer and white cotton gloves overnight, and the random factor.

In statistics, random factor analysis is used to determine whether an unusual observation—a data outlier—is caused by random events or some underlying trend.

Each morning, as I clip and nip, I perform my own informal random factor analysis: Did I get this ding when I banged my finger on the kitchen chair? Is this soreness on my pinky from tapping too often on my iPhone? Does this nail-bed inflammation stem from forgetting to wash my hands when I got home after running errands and using the germ-covered keypad at CVS without my gloves? (All random events.) Or is the increased number of recent ulcers due to the extremely cold and fluctuating temperatures these past few weeks? (An underlying trend.)

Trends, such as weather patterns, are a bit easier to cope with, once identified. I just need to dress with greater attention to the forecast. More layers. Don’t mothball the down coat or sweaters quite yet. Keep those scarves and wrist-warmers handy.

Random events are the most challenging because, by definition, they’re random. I have no idea that I misjudged the distance between my finger and the back of the kitchen chair as I reach to pick my wallet off the table until I feel the pain. I can’t anticipate an ulcer on my iPhone pinky when for months the finger has been fine and I haven’t changed my frequency of tapping and texting. I don’t always get an infection every time I use a check-out keypad bare-handed, though I’m beginning to douse my hands in antibacterial hand cleaner as soon as I get back in my car, just to be safe.

You could say that I’m constantly adjusting and adapting my protective behavior as I continue to gather more data points.

But random is as random does. You just can’t anticipate all the bad stuff you’re going to run into every day. Or, to be fair, all the good stuff, either.

So my morning ritual is as much a meditation on my state of being as it is a random factor analysis. Here is where my fingers are today. This is how the rough patch of skin feels before and after I file it down. That is an incipient hangnail in need of trimming before it gets worse. Here is how much dead skin I can cut away to sense more through my thumb. That ulcer still needs a bandage. This one looks like it could go without, finally.

Rub, wring, rub, wring. The moisturizer absorbs into my pores, a silky, invisible film to keep my skin flexible and ready for whatever the day may bring. This is how I try to protect myself. This is how I face the world each morning.

Photo Credit: topher76 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.

Murmuration Liberation

· · 2 Comments


“All religious rituals, perhaps like all art, are attempts to gesture toward what cannot be spoken, to invoke it and make it palpable, a sense of the world too immense to be summed up in words without sounding like prattling children.”

Jonathan Safran Foer
New American Haggadah

Passover comes early this year, the evening of March 25. As I write, Al is working on the kitchen, doing the final cleaning and kashering and countertop covering before we switch all our dishes over to the kosher-for-Passover cookware and red-and-green glass settings that were once his mother’s. It’s a lot of work, if you observe all the stringent Jewish laws around Passover food preparation—and the source of much good-humored communal kvetching: If this is the Feast of Freedom, then why do we feel like slaves in the kitchen?

This annual cleaning ritual is just one step in the process of prodding yourself to focus on retelling the story of the Israelite’s Exodus from Egypt. Upending your kitchen, removing all traces of leavening from the home to recall how our ancestors left in such haste that they couldn’t wait for bread to rise, causes you to stop and examine not only your surroundings, but your intentions:

How do you enslave yourself? What weighs you down in your life? What holds you back? What obstacles do you throw in your own path? What burdens can you lay down, freeing yourself to live a more fulfilling life of generosity, gratitude, grace and compassion?

Everyone who participates in the Passover seder is asked to imagine what it would feel like to emerge from slavery to freedom. There are so many ways we imprison ourselves. The ritual presents a formidable challenge, if you take it seriously.

Chronic health issues, of course, create their own form of imprisonment. Scleroderma, at its most virulent, feels like being trapped in your own skin. Other diseases bring their distinctive, cruel pains and restrictions. Our bodies, so complex and miraculous, can fail us in as many ways as we take them for granted.

But the feelings of constraint, the constant struggle against pain and physical limitations imposed by chronic illness, are only the first barriers to overcome—the barbed-wire-topped prison walls. The harder, interior cell to penetrate is the one the mind constructs.

I fight this all the time—that murmuring voice of angst, the one that worries, with each recalcitrant ulcer, whether I’ll get another infection that could land me on IV antibiotics; with each staircase that leaves me short-winded, how much harder it will be to get around in five years; with each additional minute it takes me to work around my clumsiness, how much longer I’ll be able to manage for myself.

I know this doesn’t help. I know I need to focus on the present and all I have to be grateful for. I know that catastrophizing is self-defeating. But the voice still murmurs.

Paradoxically,  the key to unlocking this particular, insidious form of self-imprisonment isn’t to silence that voice, either through self-lectures on the impropriety of self-pity or sheer force of will. The more I try to suppress it, the more the murmuring seeps into my consciousness.

No. The only way to soothe the fears is to acknowledge them. Loss, and fear of more loss, is as understandable and human as it can be emotionally crippling. Chronic disease, whatever its form, brings losses. Giving yourself the gift to grieve what you’ve lost and feel self-compassion for what you’re going through is essential to coping, healing and moving forward.

After all the cooking and dishwashing and hosting and cleaning, after we’ve joined at the seder table with our cousins to retell the Passover story once again, that’s the release I’ll be seeking this year. And the one after that. And the one after that.

Image Credit: Illustration from Vaught’s Practical Character Reader, a book on phrenology by L.A. Vaught, 1902, Library of Congress Internet Archive, courtesy Public Domain Review.

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.

Soloing

· · Leave a Comment

One of the scary things about having a chronic disease is wondering what will happen if the people you love and depend on are no longer there. Many cope, living on their own. I have great respect and empathy for those who do, because it’s hard and exhausting to deal with all the aspects of managing your health by yourself.

For the past 10 days, I’ve had a taste of that experience, as Al has been away in Israel visiting Mindi, our eldest. Last year we made the trip together to see her; this time around, we had to economize, and since it’s very strenuous for me to travel that far alone, Al made the trip by himself. As I write, he’s in the air, on his way home from a great father-daughter adventure. I’m glad they had a wonderful visit, and I’ll be glad when he gets back.

I’ll admit, I was anxious about his leaving. In the 28 years we’ve been married, he’s traveled abroad a few times, but I have always had one or both of our daughters here with me. So this has been the longest stretch of time that I’ve had to manage by myself since I was diagnosed nearly three decades ago with an autoimmune disease that turned out to be scleroderma.

Friends have been a great help. We had a messy snowstorm the first weekend Al was away, and our good neighbors dug me out. I had several back-up contacts in case more bad weather swept through, but we lucked out with just rain and snow flurries that quickly melted.

I joined other friends for Shabbat supper on the two Friday nights during his absence, which helped break up the week and made for good company. I went to our synagogue’s Purim party. I took my regular evening Pilates and dance classes, and joined friends for weaving. I had plenty of work to keep me busy. I drove to New York to see our younger daughter, Emily, at her college this past Sunday.

So all of this has made for a very full stretch. But I also managed to injure my left wrist. Every time Al has been abroad, it seems I mess up one of my joints. I don’t exactly know how I did this—probably from lifting things I don’t normally lift, opening boxes or jars I usually hand off to him, trying to shovel the slush off the back walk instead of asking someone for help, or some combination thereof.

I saw my rheumatologist at Boston Medical Center for a regularly scheduled appointment last Thursday, and he thought I had developed some tendonitis. I’ve had my wrist in a brace for nearly a week, and today is the first day it feels close to normal.

Yes, thank goodness, my body does heal, even when I’m frustrated and impatient. But I’m also tired. All the tasks that you share in a marriage add up quickly when you’re going solo. Anyone who finds herself suddenly without a partner, by choice or circumstance, knows this all too well. When you have chronic illness as an extra partner, the fatigue factor intensifies.

This is what I’ve learned over the past 10 days:

Sometimes it’s nice to have the house to yourself and do everything exactly as you want, without having to negotiate. I’d be lying if I didn’t admit that I’ve enjoyed having my own space for a little while.

I can definitely manage on my own if I have to. This is reassuring, to the extent that I’ve had nagging doubts as my health has gotten more complex.

Next time, I’ll need to rethink how much help to ask for, what I can leave go and what is absolutely necessary. It’s not worth hurting myself or getting overtired to “get stuff done.”

I miss my husband. I’m glad he’ll be home soon.

Photo Credit: Funchye 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.

Don’t Tell Me the Odds

· · 8 Comments

Twenty-eight years ago this month, I first heard the word scleroderma. I was sitting in a rheumatologist’s exam room, a few weeks after returning from my honeymoon with Al, trying to wrap my head around the fact that I had some kind of autoimmune disease that was at the root of all the strange symptoms I’d been experiencing for the past three years.

We talked about my history of extremely cold, blue hands; the swelling fingers, migrating joint pain and photosensitive skin; the fatigue that made me feel as if someone had turned off a switch in my brain; the positive antinuclear antibodies blood test that confirmed my immune system had gone haywire and was assaulting my healthy tissue.

My rheumatologist, who has since become one of my most stalwart partners in combatting this mysterious and complex disease, thought I had one of three possible illnesses: rheumatoid arthritis, lupus or scleroderma. I went home, emotionally numb, and cried with Al for a long time.

This was before the days of the Internet. I took out a book from the library about lupus to try to learn more. Scleroderma sounded so strange, so remote, I didn’t even entertain the possibility. Plus, I couldn’t find any information.

Slowly, as the skin on my hands and face began to tighten, the S-word became more threatening. I picked the brains of our physician friends. They were supportive and grave when I told them the looming diagnosis. Back then, the mortality statistics placed the odds of survival at about seven years from onset. I chose to ignore this.

But I had to find out more. With Al, I attended several meetings of a local scleroderma support group. Here I met people with much more advanced disease—mostly women, some with fingers bent like claws; others with shining, mask-like faces, unable to close tightened lips over teeth; still others with only nubs left of their fingernails.

The conversation focused on treatment options, presentations by local rheumatologists about the many complications of the disease, shared angst. I lasted about four or five meetings and then told Al I didn’t want to go back. Everyone meant well, but the energy was so negative, I couldn’t continue. So much of the conversation focused on each person’s individual problems. I found it terrifying. I didn’t want to identify with these people. Was I really going to end up like them?

In the years since, I have come to appreciate the value of support groups, which offer a unique opportunity to commiserate, share insights and learn from fellow travelers on this strange journey. But for the newly diagnosed, any encounter with information about scleroderma—whether in person or online—can feel like drowning in a tsunami.

There is so much that can go wrong: tight skin, painful joints, ulcers and infections, kidney failure, pulmonary hypertension, numb hands and feet, lost mobility, fatigue, disfigurement. And that’s just the short list.

Today you can read for hours about the many permutations, complications, risks and challenges of scleroderma with the click of a mouse. The Internet is loaded with facts about the disease and latest treatments, commentary from doctors and patients, current research and disturbing images of worst-case scenarios, as well as plenty of bogus treatments and BS. If you don’t know how to filter it, if all you have is a diagnostic label, you can scare yourself even sicker from worry about all the bad stuff that might happen.

But scleroderma is a disease that manifests uniquely in each individual. That’s why, after three decades, I read to stay informed, but for the most part, I don’t immerse myself in scleroderma content, even as I write this blog each week. To some extent, this is because I’ve learned enough from experience and the gift of excellent physicians that I have a solid working knowledge. But it’s also a protective habit I developed years ago—to focus on what I need to know to get appropriate treatment and stay away from the long list of what-if’s.

This goes to a basic fact of living, no matter what your health: If you knew all the bad things that were going to happen to you over the course of your lifetime, you’d never get out of bed. If someone had told me 30 years ago, when I first started having symptoms, all the difficulties that were to come, I don’t know if I would have been able to cope. Time, experience, quality medical care, supportive family and friends, inner resources you didn’t know existed—all combine to enable you to manage challenges you never thought you could handle.

Years ago, my high school boyfriend’s mother said to me, “No one goes through life unscathed.” I was only 17 and had no idea how to respond, but I was deeply shaken. She was right, of course. But she didn’t tell me the other piece of that truth—when the worst hits, you learn what you’re truly capable of.

I wish I had never heard of scleroderma. And yet, I’m much stronger for it. I wish there were other ways to have come to that self-knowledge. But here I am. Some days I get scared about what still might happen, where this all will lead. I make lists and pepper my doctors with questions. Then I try to focus on the present moment, which is all we really have, and do my best to make the most of each day. I remind myself to be grateful to have made it this far. And keep ignoring the odds.

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.

Photo Credit: Lynn Friedman via Compfight cc