Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

Heat Wave

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In India, “cold weather” is merely a conventional phrase and has come into use through the necessity of having some way to distinguish between weather which will melt a brass door-knob and weather which will only make it mushy.
—Mark Twain, Following the Equator

It’s been extraordinarily hot in India in recent days, and here in Massachusetts, as well—not hot enough to melt brass door-knobs, but close. Temperatures in Delhi neared 109 degrees Fahrenheit over the weekend. We weren’t that far behind. I was in Cambridge on Thursday, and my Prius recorded 99 degrees outside around 7:00 p.m.

Normally, I enjoy hot weather. Summer is my time of year. My Raynaud’s quiets down, and my hands are comfortable most of the day. My ulcers heal. But last week’s record-breaking heat wave was too much, even for me. I hardly ever break into a sweat, but I was perspiring rivers.

We New Englanders are fond of saying if you don’t like the weather here, just wait a few minutes. Not so last week, when the heat wave locked in for nearly three solid days. I was grateful to be in air conditioning, which I usually can’t stand.

I used to work in an office that was so cold in the summer, those of us with slighter builds would walk around in heavy sweaters and, sometimes, coats. What amazed me (to put it mildly) was that we had to put up with it. Some of my co-workers had heftier physiques and thrived in the cold. Some were men, who just seem to burn hotter than women (and who always, especially the heftier variety, seemed to be in charge of the computer program that ran the heating and cooling system). Some had normal internal thermostats, unlike myself. Whatever the reason, the majority didn’t want it any warmer. Some complained it wasn’t cold enough. This, despite the need to conserve energy and finances. The shivering ones among us were told to put on sweaters and deal. Infuriating. One of the many reasons I’m glad to be working for myself, now.

When you have severe Raynaud’s and finger ulcers, air conditioning isn’t just a nuisance. It hurts. More than winter’s chill, because you can’t escape the cold in the space where you need to do your work, keep your appointments or shop for food. Your blood vessels contract and your ulcers smart like crazy.

I always carry layers with me in the summer—a sweater and my Wristies, which are great fleece hand-warmers. This usually does the trick. But it’s a constant balancing act, because my hands can turn blue even if it’s in the ’80s and a breeze starts blowing. Summertime is all about managing relative temperature changes, more than absolute temperature. Except above 90 degrees.

At home, we have no air conditioning, just ceiling fans and window screens. Al is fine with it, concerned for my health and glad to save money on our electric bill. Our daughters both grew up with no AC and understand my issues with staying warm. For most of the summer, this works well—except on days like the end of last week.

It was so hot (how hot was it?) that I went to the grocery store without a sweater to protect me from the freezer section. I never do this. I hate grocery shopping because the stores are so cold, they make me feel sick from numbness. It was so hot that I had to put my Aquafor ointment in the refrigerator so it wouldn’t turn to soup when I squeezed it onto my finger ulcers. It was so hot that I blasted the AC in my car at 68 degrees and directed the vents onto my face and neck to clear my logy brain.

Today, we’re back to normal, whatever that means with global warming on the rise—another rainy June day, thunderstorms, temperatures in the ‘70s. Later in the week, it’s supposed to creep up to 90 again. It’s going to be an interesting summer.

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.