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.

Here, But Not

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I’m writing Saturday night, as the parsnip-pear soup simmers on the stove for Rosh Hashanah dinner on Sunday. And when this post publishes Tuesday morning, I’ll be getting ready to go to synagogue for the second day of the Jewish New Year.

In our wired world, our words can travel to their appointed destination on schedule, no matter where we happen to be or what we happen to be doing. So even though I’ll refrain from work and not touch my computer for the length of the holiday, it will seem as though I’m online, doing business as usual.

Here, but not. The Internet, email, texting, smart phones—all create the aura of being there, regardless of whether we’re actually present.

The irony, of course, is the more we communicate through the electronic ether, the less we’re present in the world around us. Everywhere I go, I marvel (to put it politely) at how many people are constantly texting or talking on their cells, noses buried in those little screens, never noticing the sidewalk or the sunshine or the car that’s making a left-hand turn in front of them.

And I think about this often, because time takes on a different meaning when you are living with a chronic disease. Minutes, hours, days are more precious. With each passing year, I feel a greater need to experience each day fully and do something meaningful with my writing.

Staying present, really present for the people I love, appreciating whatever each day brings, even the difficult, annoying parts, takes focus and determination. I can multi-task as well as anyone, but I no longer think that’s a great way to work or live. Better to simplify and pay attention to what’s in front of me than to spread myself too thin by trying to do too much, which always leaves me worn out and aggravated and struggling to slow down my brain at night so I can sleep.

Case in point: This past Friday I planned to drive to a supermarket about 20 minutes from home because they have excellent produce and I needed a lot of fruits and vegetables for my holiday menus. I left later in the day than I’d intended, trying to finish one more thing before I quit working, and decided to take a different route that I thought would be faster in mid-afternoon traffic. But, of course, I got lost, had to ask for directions, and spent 45 minutes getting there, instead.

I was totally annoyed with myself. Then I decided to let it go. There was no point getting aggravated because I wasn’t going to get there any sooner. As I drove, just watching the road and surrounding scenery, I got an unexpected insight about work that never would have occurred to me if I had continued multi-tasking and forcing my brain to track too many details, as I had for most of the day.

I spent the next hour at the market, focused on picking the best parsnips and pears and other savory produce, weighing and labeling each bag with its price, and gave myself a pat on the back at the check-out line when I discovered I’d actually stayed within my budget.

Of course, now I’m back to multi-tasking, writing while the soup cools on the stove. But it’s filling the house with wonderful smells, and when I wrap up this post, I’m going to enjoy watching the food processor transform the chunks of cooked fruit and vegetables into a swirling, golden mass. Then I’m going to bake the challah that’s quietly rising. And then I’m going to get some sleep.

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.

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.

Backyard Rambles

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A great vacation lifts you out of yourself into a new world that enables you to reflect on your present state of being, gain perspective, inspiration.

And it doesn’t require extensive travel or expense. Last week, Al and I took time off for day-trips to places we’d never been right here in Massachusetts.

This strategy conserved both money and energy. When we’d had enough for the day, we just drove home. We got a relaxing mental break from work without the physical strain of travel—a significant plus for me.

Our drives took us north to Royalston, just shy of the New Hampshire border, for hiking in beautiful forests managed by The Trustees of Reservations; southeast to Brockton’s Fuller Craft Museum, to view exquisite blacksmith art and glassworks; east to Concord for a great exhibit of Annie Leibovitz photos at the Concord Museum, a pilgrimage to the graves of Thoreau, Emerson and Alcott, a view of the Revolutionary battleground at the North Bridge and a trek along Walden Pond; and west to Amherst and the Eric Carle Museum of Picture Book Art exhibit of original illustrations by Ezra Jack Keats (The Snowy Day), as well as a stop at the National Yiddish Book Center, where we watched actors rehearse and sort out the psychological motivations of characters in a translated play by David Pinski.

A rich week. I’m still processing. . . .

Scrambling over roots and boulders alongside Spirit Falls in Royalston, relieved that I could keep up with Al, I savored the music of water slipping over rocks (too dry this summer for much more). If a brook trickles in the forest and nobody hears, does it make a sound?

At the Fuller Craft Museum, marveling over swirled wrought iron tables and whimsical glass lamp sculptures, playing with rag weaving and admiring bowls turned from tree stumps, I envied those gifted, strong hands that made art of the everyday, every day.

Viewing the powerful photos in Annie Leibovitz’s Pilgrimage exhibit at the Concord Museum, I caught my breath before an image of the gloves that Abraham Lincoln wore the night he was assassinated at Ford’s Theatre—index finger and thumb stained by rust-colored blood.

At the headstones of Henry, Ralph and Louisa May, I photographed still lives of thank-you notes, postcards, stones, pinecones, leaves, and clusters of pencils and pens. One note thanked Emerson for saving his life. Another quoted “Self-Reliance”: “To be great is to be misunderstood.”

As rain pummeled the Eric Carle Museum, I read how Ezra Jack Keats broke the color barrier in children’s book illustrations in the ‘60s—a teacher wrote him that, after she read The Snowy Day to her class, African American students began to draw self-portraits with brown crayons instead of pink—and rejoiced in the power of art to change lives.

Sunday night, not wanting to let go of the week’s magic, I found essays by Thoreau and Emerson. Two quotes resonate:

This world is a place of business. What an infinite bustle! I am awakened almost every night by the panting of the locomotive. It interrupts my dreams. There is no sabbath. It would be glorious to see mankind at leisure for once. It is nothing but work, work, work.
—Henry David Thoreau, “Life Without Principle”

Insist on yourself; never imitate. Your own gift you can present every moment with the cumulative force of a whole life’s cultivation; but of the adopted talent of another, you have only an extemporaneous, half possession. That which each can do best, none but his Maker can teach him. No man yet knows what it is, nor can, till that person has exhibited it.
—Ralph Waldo Emerson, “Self-Reliance”

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.