Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

A Shot in the Arm

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There are some advantages to seeing your doctor often. Mainly, you get to know each other as real people. And you get to know the support staff—receptionists, nurses, aides—as real people, too. This helps. A lot.

Last week, I had one of my quarterly visits to my rheumatologist at Boston Medical. It was an 11 o’clock appointment, which, by definition, knocked out at least three hours from my workday—including driving, parking, waiting and the appointment itself, plus whatever other tests he might order.

I was doing fine on the Mass Pike until I got to the Pike Extension closer to the city. Suddenly, traffic slowed to a near halt. I spent many years commuting to Boston and know the patterns pretty well, so it was a surprise to hit a jam in late morning. I called the clinic to let them know I was stuck.

“You have a 15-minute window,” said the voice on the other end, someone unknown to me. “After that, we can’t guarantee your appointment.” I had already been driving over an hour. I tried to explain that I had no control over traffic. She just repeated the company line. I hung up, thoroughly annoyed, and decided that no matter when I finally got there, I’d insist that they check with my doctor and fit me in.

I hustled around more slowdowns and construction, finagled my way through local traffic near the hospital and lucked out with a parking spot on the garage’s fourth level. When I reached the Rheumatology Clinic, slightly short of breath, it was just past 11:15. The two receptionists that I know were there, totally fine with my arrival time. And, as is often the case, my doc was running late, anyway. I settled in with my Kindle and started reading.

About a half-hour later, when my rheumatologist arrived in the exam room, I related my travel woes. He said in the future, not to worry. “I often run late,” he admitted. “If everyone has to wait for me, it’s only fair that I would fit you in.” Thank you, thank you. Not only is he a great diagnostician, he’s a mensch.

When we finished reviewing my latest episode of cellulitis (he laughed when I quipped how it inspired my blog post the week before) and the rest of my status report, I asked if I could get my flu shot. As he left the room, I promised to send him images of my finger ulcers using my new iPhone, the next time I changed my dressings (we agreed it was a great way to save time and wound exposure in the office visit).

A few minutes later, one of the nurses appeared at the door carrying a hypodermic needle and an alcohol swab in a foil packet. “Evelyn, it’s so good to see you!” she said with a laugh. “It’s been such a long time. You look great!”

A big woman, she opened her arms and gave me a huge hug. This is the nurse who handles all medication refills and who did battle with our former insurance company to be sure I was able to continue with a very expensive prescription when the insurer didn’t want to cover it without insisting I go through an invasive procedure. She won.

We caught up a bit, and then she gave me the flu shot—just a slight pinch, no pain. We said our goodbyes, I collected my stuff and left the exam room. As I set my next appointment for February, I commiserated with the secretary, who knows me by sight, about how neither of us wanted to think about the winter to come.

Maybe it was the hug, but my arm barely hurt the next day.

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.

Waiting for Sandy

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Rain drips off the ridge of the bay window outside my home office. Leaves tremble and branches sway. One long, thin lilac branch waves back and forth like a pointing finger. The sky is the color of soaked cotton balls. I can hear no birds, only the patter and plop of rain drops falling off the tree limbs overhanging our roof, and the wind’s sigh.

It’s strange and curious and unnerving, this waiting for Hurricane Sandy, billed as the worst storm to hit the Northeast since the Hurricane of 1938. I wonder where the birds and squirrels go, how they will protect themselves when the gale batters their tree-top homes. We live within the red-lined high wind warning zone in Massachusetts, expecting gust of 40 to 70 miles per hour at some point later today. Maybe overnight. And there will be rain. Lots of rain.

I worry about the trees that sustained so much damage in last year’s freak October snow storm, when the night was filled with the gunshot of cracking branches. Our neighbor’s old Silver Maple toppled into our back yard, blocking our kitchen door and missing the roof by inches.

And I worry about losing power for days. This is my biggest concern. I can’t withstand the cold, even as the weather is mercifully well above freezing this time around. The utility companies have promised speedy, efficient repairs to downed wires. They’re anxious to repair their damaged reputations from last year’s storm that left thousands without power for days and even weeks. We were lucky and provided hot meals and showers for neighbors who went without heat. But will our luck hold again? If everyone loses power to this monster storm, where can we go?

It’s a stark reminder of how control is an illusion—often the way I feel about my health. A week ago Sunday, out of the clear blue, I woke up with cellulitis in my left elbow, just one hour before I was leaving for a two-day business trip to New York. Not knowing how quickly the red, puffy skin infection would spread, I took a gamble on managing with oral antibiotics that I always have on hand, per discussions with my infectious disease specialist, and headed out the door.

For the next 12 hours, on the train, at Penn Station, during meeting breaks and at my host’s home, I kept monitoring the progress of the warm redness, telling myself if worse came to worse, I was at least in a place with a high concentration of excellent ERs. “You know the cost of making a bad call,” warned the ID doc who was covering over the weekend, when I called Sunday night to report that the cellulitis had spread around the side of my elbow. “Yes,” I answered, “it could go septic.”

I promised I would go to an ER if I spiked a fever or if the infection spread any farther and prayed the antibiotics would finally kick in. Somehow, I got to sleep that night and woke to discover that the redness was receding. The rest of my meetings went exceedingly well, and I even had a spare hour to walk the High Line for the first time, under exquisite blue October skies.

That day seems a long time ago, already. Now I’m just sitting here, waiting to see if this mega-storm will be as bad as the forecasts predict, or if it will lose power as it spins over land.

We have no control over these things, of course. Whatever extreme weather we have set in motion with global warming, even if all the nations of the world finally get together and commit to reducing carbon emissions, we will all have to live with for years to come. At least we have excellent weather forecasting, unlike so many caught by surprise when the fatal ’38 Hurricane barreled over Worcester and up the Vermont-New Hampshire border. We’re also blessed with extensive emergency support. But there’s nothing I can do to stop another tree from falling or the wires from coming down. All I can do is stay indoors until the storm passes.

And there’s nothing I can do to prevent another mysterious bout of cellulitis or whatever else my scleroderma throws my way without warning. It just is. All I can do is take care of myself as best I can and not let this disease stop me from living my life fully. From where I sit, there’s no other choice.

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.

What Works for Me

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Every case of scleroderma is different. But after nearly 30 years with this disease, I’ve learned a thing or two about how to manage. So here are some basic suggestions that I hope will make life easier for you or someone you love with scleroderma:

Get the Best Medical Care You Can Find
This probably goes without saying, but it’s the single most important step you need to take to deal with this incredibly complex disease. If at all possible, find a medical center that specializes in scleroderma, even if you have to travel for occasional visits. Both the Scleroderma Foundation and Scleroderma Research Foundation can help you locate the nearest scleroderma specialists.

I’m blessed to live within an hour’s drive of Boston Medical Center, where not only the Rheumatology Department has extensive expertise in the disease, but also many other specialists do, as well. It really helps to have a cardiologist or dermatologist or nephrologist who also knows scleroderma, and you don’t find that unless you’re seeing physicians at a center where there’s a critical mass of scleroderma patients.

Get Enough Sleep
We’re all too busy. We all try to pack too much into each day. Especially if you’re juggling work and family and volunteering and aging parents and all the rest, it’s hard to get the sleep you need, even when you’re healthy. With scleroderma, you need to get sleep. Without it, you’ll get sicker. End of discussion.

Dress in Layers, Favoring Natural Fibers
When you need to keep warm, layers are the best way to go, especially if you’re moving in and out of spaces that vary in temperature. Cotton, wool and silk are my favored fabrics for warmth. Years ago, when I was first struggling with Raynaud’s, my rheumatologist told me that synthetics like polyester trap moisture and can make you chillier, whereas natural fibers wick away moisture and allow your skin to breathe. He was right. This is also the reason I wear shoes made of leather or natural fibers. Anything plastic or rubber causes a lot of perspiration and can lead to skin breakdown.

A lot of heat is lost through your head. That’s why, back in the day, people wore nightcaps (not the alcoholic variety) to stay warm in unheated bedrooms. Especially here in the Northeast, hats are a must in winter. I like wearing scarves made of natural fibers, for reasons cited above and because they make a nice fashion statement while keeping me comfortable.

Protect Your Hands
Okay, this is obvious. Here’s what I do:

  • Use disposable latex gloves for all cooking to keep bacteria out of my fingertip ulcers.
  • Wash my hands frequently with anti-bacterial gel. I have to do this to avoid getting my bandages wet. I checked this with my Infectious Disease doc and he said it was fine, contrary to all the hoo-hah about too much anti-bacterial soap causing germs to flourish. When I wash my bare ulcers, I use Aveeno Ultra-Calming Foaming Cleanser. It never, ever stings and is easy to wash off.
  • Use soft, flexible fabric bandages for finger ulcers. These can be hard to find, as many generic fabric bandages now include antibiotic ointment in the pads, which I don’t like. I favor Coverlet Adhesive Dressing Strips, with one caveat—the adhesive is very sticky, and you have to really soak the bandages before removing so as not to tear your skin. These are available online, not in stores. Aquafor Ointment is an excellent dressing. I also use small squares of Sorbsan, a surgical dressing made of seaweed, as a moisture barrier. And I change my ulcer dressings twice a day. Yes, it’s expensive. But not as expensive as getting an infection.
  • Wear wrist warmers. I like Wristies® fleece warmers, but there are now many alternatives on the market. I use these throughout the year, to keep warm in the winter and protect against air conditioning in the summer, and as an alternative to gloves during transitional seasons. They’re very affordable, come in many colors and several lengths, and there are even Wristies with a little pocket for a hand heat pack.
  • Wear natural fiber gloves and use mittens for best warmth. I have a very well-worn pair of leather gloves that are soft and provide ample room for my many bandages, as well as a good pair of down mittens for winter.

Get Regular Exercise
I let this go for a long time. Big mistake. You lose range of motion if you don’t move. One of my rheumatologists gave me the excellent advice to find some form of exercise I really love, because I’ll be able to stick with it. So I’ve been doing Pilates for several years, now, and also a variety of forms of dance—all beginner classes, and I’m a klutz, but it doesn’t matter, because I always feel so much better afterwards, and I’m even regaining a little grace, despite stiff joints. Yes, it’s hard to exercise when you’re in the active stages of scleroderma and so tired all the time. But even walking a short distance in fresh air is better than sitting still in your home, and it’s also good for your soul.

Surround Yourself with People Who Support You 
Many people don’t understand what you’re going through and will offer a lot of well-meaning but useless advice. Others will treat you like an invalid. Avoid them. Find those who will give you hugs when you need it, listen to your angst without criticism or commentary, remind you of your strengths when you’re at a loss, and most of all, who will accept you for who you are, no matter what. This is essential.

There’s much more I could say here, but I’ll save it for future posts. I’d love to hear what’s worked for you, too.

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.

40th Reunion

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I stare back at myself from the pages of my high school yearbook—soft cheeks, full lips, eyes wide, so serious—self-conscious, not doubt, about teeth I considered far too large for my mouth and long hair that was always too frizzy to lay flat.

On page after page of the yearbook I co-edited in 1972, my classmates are captured in shades of gray, clothed in requisite suits and dark blouses, faces frozen in bright smiles, somber gazes and cynical smirks—17-year-olds anticipating life beyond high school.

And here we are, some of us, at least, gathered at an elegant inn overlooking the Hudson in autumn for our 40th high school reunion, to find out what really became of us during all those years. Very few of my circle of friends are attending, but I’ve decided to go, anyway. I’m curious and, yes, feeling a bit nostalgic for that time of infinite possibilities.

I’m met at the door by a classmate I barely knew who chaired the event. “You look beautiful,” he says, guiding me inside. You probably say that to every woman who arrives, I think, but I appreciate the compliment, nonetheless.

At the check-in table, I’m embraced by classmates who were former cheerleaders. I was one of the nerds. But there are no more cliques, none of that awkward adolescent silliness that could be so painful 40 years ago. Thank goodness. We’ve all grown up. Everyone is gracious and simply glad to be here.

I find two of my old friends, one who lives just an hour up the river and one who has travelled all the way from Montana. We hug and kiss and take pictures, find a table together for dinner and begin to share stories.

My Montana friend, vivacious as ever, has the scoop on many of our old gang’s whereabouts. As I mingle with other classmates, I discover more details. We are teachers, doctors and lawyers; social workers, nutritionists and psychologists; artists, writers, sales reps and consultants; marketers and massage therapists. One classmate is a government affairs director for nuclear power plants. Another frames fine art in Manhattan. A third got in on the ground floor of Pay Pal. A fourth overcame the stammer that plagued him throughout his youth and is now a leading speech therapist.

There have been miracles—one friend who was diagnosed in college with a deadly form of Hodgkins Lymphoma beat the disease, married and has raised a family. And there have been tragedies—17 of us are dead, nearly 10 percent of our small senior class. One friend couldn’t join us because he was rushing to see his sister, dying of cancer. Another shares that her beloved husband died in the World Trade Center on 9/11. “I’m so grateful for the years we had together,” she says.

I chat with the younger brother of one of our classmates (this reunion includes five groups of alumni) and inquire about his family. He tells me his oldest sister is in hospice, dying of a rare disease. He hesitates, searching for the word: “Sclarodarma?”

I catch my breath. “You mean scleroderma?”

“That’s it,” he nods.

“I have that, too,” I say. “It takes different forms in everyone. I fully understand what you’re going through.” But this feels almost foolish. I don’t really know. I’ve been lucky. I have the slow moving version, limited systemic sclerosis. Compared to what she’s dealing with, this is a walk in the park.

We talk some more. She was diagnosed three years ago. The disease is knocking out her systems, one by one. I try to empathize. We change the subject and discover a shared passion for trees and urban parks.

The program starts. We commemorate those who have passed. I join in a hearty rendition of our school song. We eat and share and laugh and philosophize about how, at this point in our lives, we’re just glad to be here, discovering self-acceptance, whatever our circumstances.

I leave before dessert to drive an hour to Emily’s college for an overnight stay. We gab until 1:30 in the morning. As I try to fall asleep, I find it difficult to absorb everything I’ve heard and seen.

Driving home the next day, surrounded by glorious fall foliage, I think back to the older sister dying of scleroderma. She was a few years older than me, beautiful, with long blond hair. We were in band together. I remember her one autumn afternoon, standing in formation on the football field during marching band practice, waiting as our director barked directions. She stood ramrod straight in an elegant black dress with geometric trim, reading a thick book balanced in her hands. I admired her and wished I could look like that.

How is it that we are now joined by this dreadful disease, but she lies dying and I, I am driving home from a wonderful weekend renewing friendships and sharing with my daughter? I think of the High Holidays liturgy, Who shall live and who shall die. I think of the Festival of Sukkot just ending, with its message of gratitude and abundance amidst the transience of life. I drive toward home, past the Berkshires, as trees the color of flame release their leaves beneath silver skies.

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 Do Anything Stupid

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It’s Sunday morning, overcast, nippy. I’m up at 6:00, most definitely not my favorite time to rise. But today’s the day that Al is running a 5K obstacle course race with his hospital co-workers at a track out in Western Massachusetts, and we need to be there by 8:30.

Al informed me about this a few months ago when he and his fellow social workers decided this would be a great team building activity, plus a good way to raise some money for a local charity, while they were at it. I didn’t give it much thought. As a marketing director, for years I would take my staff out to all kinds of unusual places—the Arnold Arboretum, a glass-blowing studio, a youth concert by the Boston Symphony—to strengthen us as a collaborative working group. So the basic idea sounded fine to me.

That is, until Emily came home for the summer from college and looked at the race track website. “Mom, have you seen what he’s supposed to do?” she asked, incredulous. I had to admit that I hadn’t bothered to look. I was in denial. But the man is going to be 62 at the end of October. He has a pacemaker. We agreed that she would urge him to do more than his usual morning workout to get in shape. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. Al started swimming after work. Emily went back to school in early August.

A few weeks later, Mindi came home from Israel for a month’s visit. “Mom, have you seen what he’s supposed to do?” she asked, after checking out the website. We agreed that she would push the pace when they hiked up Mt. Monadnock that week. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. They made it to the top of the mountain in good time. Al started running after work, and Mindi went back to Tel Aviv in mid-September.

The week before the race, he was running a full 5K around our neighborhood without stopping. I’d resigned myself to the fact that he was going to go through with it and that the weather forecast was crummy—chilly, with a chance of showers.

We’d discussed the possibility of my staying home, because we were both concerned I would get numb waiting for him to finish. So I decided to find a Starbucks nearest to the racetrack, in case it was raining or too cold for me to stand outside for hours. I finally checked out the website to get the address. And freaked out.

This was no ordinary obstacle course. You had to crawl in muddy water under strings of barbed wire. You had to hop from pylon to pylon over more muddy water. You had to squirm through dark, wet tunnels. You had to run up and down mucky terrain. You had to jump over a fire pit.

When Al came home Friday night, I said we needed to talk. We sat in the living room and I let loose.

“Have you looked at the 5-week training program they have on the website? This isn’t just about running. It’s cross-training! If I’ d realized what this was all about when the girls warned me, I would have tried to talk you out of it. You could really get hurt!”

Al said nothing. After nearly 28 years of marriage, he knew enough not to interrupt me when I was on a tear.

“I don’t care how cold or rainy it’s going to be on Sunday, I’m definitely coming with you. What if you sprain an ankle? What if you break a leg? What if you get a concussion, I thought. What if you have a heart attack? How will you get home?”

He kept listening, his face frozen in a tight grimace.

“I know how important it is for you to do this, I get it that you want to prove to yourself you can, and I know you’d never listen to me if I tried to talk you out of it. So I want to support you, but you have to promise me you will skip any of the obstacles that you can’t do. Don’t be a macho hero!”

“I won’t do anything stupid.”

“Okay, but what does that really mean?”

“It means I won’t do anything stupid!”

We went back and forth for a few more minutes. Al suggested that maybe I should stay home, because it was going to be too cold for me. No way.

“If you’re going to be stupid enough to do this, than I’m going to stupid enough to stand there in the rain and watch you and make sure you get home okay!” He agreed. Truce.

*       *      *

I take on the elements dressed in jeans and an old short-sleeved cashmere turtleneck, under an old long-sleeve cashmere v-neck, under a fleece vest, under my mid-weight down winter coat. I am armed with my fleece wrist warmers, gloves and a hat, and I have my umbrella. I look ridiculous, but I don’t care. I can’t take a chance on my Raynaud’s triggering for the next three hours.

As we drive out on the Mass Pike, the cloud cover is lifting. There are even a few patches of blue over Berkshire foothills spackled crimson and gold.

At the track, we find Al’s co-workers—three trim women, all at least half his age. Everyone‘s in high spirits as they don their purple tees with the hospital logo and their names on the back. A couple of athletic-looking boyfriends join the team, too.

Music pumps from two huge speakers. Other running teams sport everything from multi-colored unitards to chartreuse tutus, from Batman and Wonder Woman costumes to princess tiaras and centurion helmets.

To get to the starting gate for their 10:30 race, everyone has to climb over a four-foot-high plywood barrier. Al tells me later that he thinks the guys ahead of him are just showing off when they jump the wall. Then he realizes he actually has to get over the thing.

Smoke fills the air beyond the starting gate. An announcer juices the crowd. A siren blasts. And they’re off.

I find my way to a good vantage point midway through the course, a spaghetti-like dirt trail that winds up and down, back and forth through the muck. And wait. After about 20 minutes, I catch sight of part of the team running up the far side of the track. But no Al. A few more minutes pass. Then I see him, trudging slowly up the incline behind his young, spry supervisor. She pauses until he catches up. Okay, she’s making sure he’s doing all right. Good. I snap some pictures.

After another ten minutes or so, the team reaches the muddy sinkhole in front of me. I yell encouragement and snap some more shots. Al pumps his fist in the air as he wades through the guck. He looks exhausted, but he seems to be having a good time. I click away as they all hold hands down the giant slide into a mud hole, as they roll over red-and-white poles laid across muddy water, as they slog up and down.

When I can’t see them anymore, I head to what I think is the final obstacle, a huge pit of muddy water before a steep, gloppy incline. The sun comes out. I unzip my coat and vest and put on my sunglasses. Guys do cannon balls, flips, belly flops. Most of the gals just jump and wade through. One woman in a tutu drags herself to the side with an injured leg and is quickly picked up by the paramedic crew. But no Al and company. I keep watching and waiting.

Suddenly, there’s a hand on my shoulder. It’s Al, grimy and smiling. “We’ve been looking all over for you! We finished a while ago!” Oh no, how could I miss it! They crossed the finish line together, holding hands, he tells me. We head back over so I can take his triumphant portrait.

Al is ecstatic. “I really did it!” he beams. He gets his free beer and we grab some veggie burgers. We say our goodbyes and head to the car. On the way home, he tells me more about the obstacles. He did every one, except the pylons. Too much. So, he kept his promise.

“It was hard,” he admits as we drive back east on the Pike. “But the anticipation was worse than the actual race.” I agree. You never know what you’re capable of, even when your body doesn’t work so well anymore. Unless you try.

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.