Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

The Waiting Game

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I’m late for my doctor’s appointment. Per usual, I tried to finish just one more thing before I left the house. Then I hit road construction on the main thoroughfare between home and the medical center. By the time I have parked and found the right office inside the cavernous hospital, it’s a good 15 minutes past my scheduled arrival. And the doctor is running on time. Uh-oh.

Usually, it’s the other way around. But I get lucky. The waiting room is empty and my appointment doesn’t get bumped. I have my Kindle along, but I get distracted by the waiting room flat screen TV. It’s an episode of The Doctors, featuring a team of attractive specialists answering studio audience questions about their health. The ER doc wears a pair of blue scrubs and the others, white lab coats. The pediatrician is responding to a young woman’s query about the birth mark on her chest when the nurse calls me into my appointment.

Hoping to shave a pound or two off the digital scale readout, I take off my coat and shoes when she weighs me. We review my meds and allergies. She takes my blood pressure and temperature. We chat about the weather. As she leaves the room, I check the magazines in the wall rack. This exam room could use some better reading material—there’s a Vermont tourist glossy, a couple of trade health publications and an ersatz women’s magazine. I flip through its pages and scan the list of recommended books, wondering why it’s such a struggle to get published when all this dreck makes it into print.

My doctor is prompt and pleasant. He’s an infectious disease specialist, and we’re reviewing the plan we made over the summer to manage any future infections in my finger ulcers. After another year of on-again-off-again antibiotics, it was time to get pro-active. We marvel at the fact that I’ve had no infections since I saw him in June. I joke that all the germs have been scared off by his presence. He laughs. “I wish it were so,” he says.

We review what to do when the next infection hits. It’s a foregone conclusion. The only question is, how soon? There’s a piece of calcium migrating toward the surface of my right thumb. It’s causing me difficulty squeezing a tube of toothpaste and picking up cups. When it finally breaks through the skin, perhaps in a few months, there’s a high chance of infection. And, as the weather gets colder, my skin breaks down and is at greater risk, anyway.

We agree that I don’t need a follow-up. I’ll just call him when the next infection hits. I have the necessary antibiotics at home and know when and how to use them. He trusts my experience and my judgment. I thank him and say good-bye, for now. As I walk out through the waiting room, Family Feud contestants cheer and clap before the commercial break.

Leaving the hospital parking lot, I wait in a line of cars. It’s almost 3:20 and the shift is changing from days to evenings. On the drive home, I ease my car around the exposed man-hole covers that have turned the street under construction into a slalom course. I get home just over an hour after I left, pretty good for any doctor’s appointment—especially when I was the late one.

At the back door, Ginger is waiting patiently for my return. The sun casts long shadows. My right thumb twinges as I set down my Kindle, little green medical notebook and cell phone on the kitchen table. It’s almost time for our walk.

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.

A Little More Summer, Please

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How did it get to be September, already? It’s still in the ’70s, thank goodness, but the air is sharpening. Ginger tracked dried leaves into the kitchen yesterday. I’ve cracked the porch slider, but I’m wearing wrist warmers against the light breeze as I type.

I live in New England because I love the color and variety of all four season. But every year, I have a harder time letting go of summer. For months, I’ve been living in tank tops and shorts, walking everywhere in my sandals, rarely needing a sweater, even at night. After weeks of extreme heat, two of my finger ulcers finally healed, and I’m down to four bandages. Most Saturday nights, I’ve strolled with Al to the corner frozen yogurt stand for sundaes and savored the sweet-tart coldness.

It’s been many years since the girls were young and the coming of September meant the end of summer camp, no more punting for play dates or meaningful activities to fill all that free time.

The beginning of school was always a rush of excitement, new clothes, new notebooks and lunch bags, seeing friends and meeting teachers. I welcomed the return of structure and predictable schedules, the chance to clear my head and hear myself think once more.

Now, as the days grow noticeably shorter, September means I’m going to be cold again, soon. It’s an adjustment, as much psychological as physical. Back into sweaters and jeans, fleece and wool. Back into jackets and coats even while others are still in shirtsleeves. Back into gloves and hats. Back to numb fingers and hand warmers, too much time spent dressing to go out, too much time warming up when I come in.

September also means the approach of the Jewish New Year, a time of reflection and renewal. For this, I find the crisp air bracing, a source of energy and clarity as I review the year just past and start afresh. Here in Massachusetts, Rosh Hashanah, marked by apples and honey for a sweet New Year, always coincides with apple-picking season. It fits.

Still, I’m not quite ready to let go of summer. Leaves began falling from the Norway maples on our street a few weeks ago. I’m always surprised when I first notice, usually midway through August. It seems too early. So far, just a few leaves here and there, scattered across lawns like random shells washed up on shore. Most trees remain lush green, despite the lack of rain this summer and harsh heat waves of July.

But I saw someone using a leaf blower last week. Emily started classes as a college junior yesterday. Mindi is home for two more weeks before returning to Tel Aviv. Shadows lengthen as we spin on our elliptical path, farther from the sun.

Outside my home office’s bay window, the yews cast a prickled, shimmering silhouette on beige mini-blinds. A neighbor blasts hard rock out an open window. A small plane hums overhead. I’ll walk Ginger soon, wearing my jeans and a sweater. But still in sandals.

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.

Filter Tips

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The other night, I dreamed I had normal fingers and had to choose the right color nail polish. Nothing garish. Maybe a pearl pink or cream, my old favorites.

Of course, when I woke up, there were my fingers in their night-old bandages. The only real surprise was that I had that dream at all. It’s been almost 30 years, nearly half my life now, that my fingers have been damaged by scleroderma.

The bones in my fingers are resorbed, so the tips look stubby and my nails, like moon slivers. With rare exceptions (two summers ago I managed to go bandage-free for a couple of weeks), at least half my fingers are protected by bandages to cushion chronic ulcers that take months and even years to heal.

Oddly, although my fingertips are extremely sensitive to the pain of ulcer infections, they are dulled receivers of everyday stimuli. I feel the world through a scrim of damaged nerve receptors, fleeting numbness, ointment, dressings and bandages.

So I drop knives and forks. Or think I’ve removed an errant strand of hair from my face when I haven’t. Or whack my fingertips when I misjudge the grasp of a faucet or doorknob.

I wear disposable rubber gloves, the kind you find in the drugstore first aid aisle, whenever I cook, so I test, poke and knead through a thin rubber barrier. It used to bother me to lose that tactile sensation of food, but now it’s just second nature—I assume doctors and dentists make a similar adjustment to examining gloves.

Sometimes, it’s incredibly frustrating. I always loved to explore with my hands, and now I just have to be extremely careful. I can sense more through the skin on my inner arms, so that’s a back-up strategy for choosing which fabric to sew or ensuring the right water temperature for proofing yeast. I can make general distinctions by touch, but need to extrapolate for finer gradations of texture.

Even as I wish my fingertip nerves weren’t so damaged, however, there are some advantages to my ever-present adhesive barrier. When I sew, I can use my bandaged thumb like a thimble, as long as I’m careful not to accidentally stitch or pin my wrapped fingers to the fabric. I rarely cut myself, because my fingers are so protected. The rubber gloves save me extra hand washing.

And my bandaged, odd fingers have proven useful in another way. Several years ago, when I managed a marketing department and had to make hiring decisions, I would always note how interview candidates looked at my hands. If they stared at my bandages and didn’t make eye contact, they didn’t make the cut.

Conversely, if they just glanced at my hands but spoke directly to me for most of our conversation, I’d give them more consideration. Arbitrary, perhaps, but I always sensed that people who related to me on a personal level and didn’t get sidetracked by my strange hands were more likely to be good people to work with. Most of the time, I was right.

I still envy other women’s beautiful fingers—at least sometimes. I wish I could actually get a great manicure and have stunning, shiny oval nails, or even flaunt those miniature hand-drawn flowers or intricate patterns with tiny glass beads for special occasions.

But this is not to be. So I do my best to keep my fingers clean and safe, reach carefully, and paint my toenails, instead.

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.

Grand Old Lady

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Ginger is getting old. She turned 14 about a month ago, which means she’s 98 in dog years—or people years, I can never keep it straight, seeing as she’s lived 14 years as a dog but is the equivalent of a centenarian.

She’s been with us since she was two, a skinny, flea-bitten dog that Al rescued from owners who sold her for the price of their overdue electric bill. From the day he surprised our girls after school, waiting with her to walk them home, Ginger has been our beloved companion—silly, rambunctious, cuddly, trusting, faithful—the Golden Retriever Mindi had begged us for, for years after our other dog died.

My constant companion who hangs out under my desk while I write and follows me all over the house, often positioning herself where I’ll trip over her if I’m not careful, she’s doing really well for a Golden. Our vets are always impressed and tell me she’s way out on the tail of the big dog survivor bell curve, still friendly as a puppy and a total love bug, even as she’s white in the face and struggling with arthritis.

But it’s hard to watch her age, especially as she has more trouble getting around. She often trips over her front paws when I walk her, because, as the vet explained, she has less range of motion in her hips and has shifted weight-bearing onto her front legs. And she can’t climb stairs—or, at least, she’s afraid to—which we learned recently when she made her way down into the basement family room twice in one week and had to be carried back up both times. (We’ve since blocked the door.)

So, here we are, both with our ailments. But unlike me, she has no way of understanding what’s happening to her body, and she’s completely dependent on us to help her.

We’ve tried a few different arthritis medications. The first irritated her stomach so much she stopped eating after a week, and the second made her throw up after two days. Now we’re in day five of trying that same med plus an antacid pill twice a day, and so far, so good.

My challenge has been trying to figure out how to get the medicine into her. The first option was a chewable tablet, so that seemed like the perfect solution until she stopped eating. Her current medication is a liquid, which I’ve been mixing into low fat ricotta cheese—for Ginger, a huge treat.

The problem has been the antacid pills. I can’t open her jaws with my fingers. I can’t hold the pill. Al leaves too early in the morning to give it to her, because Ginger, grand old lady that she is, doesn’t rouse until after 9 o’clock most days. Our former dog would snap at pills. So, for a few weeks after Ginger threw up, even after I discussed the problem with our vet and he suggested the antacids, I procrastinated. I just stopped giving her meds. I was afraid to try.

But then I took her for a walk last week and she was tripping so much I decided I really had to get over myself and figure this out. A smidge of butter on the pill, delivered on a teaspoon, did the trick. After only a few days, Ginger now perks up her ears when it’s pill time, trots over to the fridge while I prepare the spoon and swallows her pill patiently. She’ll even allow a second try if I miss my aim and the pill falls off the spoon. A good thing, because my hands won’t cooperate easily.

Ginger’s big treat, also part of the mix to be sure her stomach doesn’t get irritated, is a piece of challah after she’s taken all her meds. This is her favorite food in the whole world. She grabs it from her bowl and runs under the kitchen table to eat in her bed.

Yesterday when we walked, she was perkier, sniffing every leaf and blade of grass, curious, not lagging behind me as much when we went up a slight hill on the way back home. She got up from her bed with less trouble this morning and took a leisurely downward-dog stretch. She’s eating normally. So I have my fingers crossed.

Tonight Mindi comes home from a year in Israel. She’ll be with us for a month, then going back to Tel Aviv for another year. She’s asked after Ginger often when we’ve Skyped, and we’ve tried to get Ginger on screen for a woof or tail wag, but without much success. I’ve had my worries this year, watching her age more rapidly, if she’d hold on until Mindi’s return. She has, and so have we. And I’m grateful, very grateful.

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.