Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

A Little More Summer, Please

· · 2 Comments

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

· · 4 Comments

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

· · 4 Comments

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.

Blue Sea Glass

· · 2 Comments

How is it that vacations always end too soon? Just 24 hours ago, we were arriving at the ferry dock in Portland, Maine, back from a week on a lovely, remote island in Casco Bay. The sky was periwinkle, the breeze stiff. As we’d sailed to the mainland, our captain pointed out a half-dozen porpoise riding the tide, hunting fish. I never was quick enough to glimpse them, but I heard one cackling as it dived over the waves.

For eight days, Al and I slept in, took walks every afternoon and went to the beach late, when the sun wasn’t searing hot. We read and I wrote and sketched. We sat for hours watching the terns fly high over the water, then nosedive into the waves, snag minnows and pop back into the air, gulping their silvery catch as they flapped into the headwind to reconnoiter.

And we collected sea glass. Mounds of it. Mostly different shades of white with a tint of lemon or lime, a tinge of aqua, a hint of lilac; also beer bottle browns and greens.

I’ve been gathering sea glass since our now-grown daughters were little and we would scour the beach, holding hands, singing and skipping over surf. Finding even one piece would be cause for a little dance. Here, though, sea glass was bountiful. So the search was on for a sea gluncker’s treasure, cobalt blue.

From our first trip to the beach, the day we arrived, I was hunting for blue sea glass. A great meditation, especially since I was sick with a horrid cold when we left home, hacking and sneezing. And totally pissed off, because, of course, you’re not supposed to be sick on vacation, and I caught it from Al, who had come home sick the week before and missed several days of work, as a result. Plus, after my recent vitreous detachment in my right eye, my sight was full of floaters—so many that when I gazed out at sea, the sky looked like it was filled with space trash.

Grumble, grumble, cough, cough, grumble, grumble. I walked the beach, focused on each stone and shell in my path. Will my vision ever clear? What if I get a retinal detachment? How can I get to the mainland fast enough?  I picked up a white stone shaped like a tiny ice cube and rolled it between my fingers. Why didn’t he wash his hands more carefully? Why was I so stupid to use his computer and not wash my hands after? I don’t want to be sick all week! We wait a whole year for this trip, and now what?

My breathing was so compromised that by Monday morning I woke up and decided that if I was still that sick by Wednesday, I was going home. I told Al, insisting that he stay and I’d pick him up on Sunday. He said he’d come with me, but I really didn’t want to spoil his week. We talked about future vacation plans and how I’ve realized, as my health gets more complex, I need better access to medical facilities, just for peace of mind. He agreed.

With that reassurance, I redoubled my efforts to make the most of the trip, breathed in healing sea air and kept searching for blue sea glass. By Wednesday I was doing much better, well enough to suggest a long walk to see an exhibit of paintings by local artists at the island’s historical museum. We headed out along one of the two main roads, which had just been repaved the day before. And stepped on warm macadam. Which glommed onto the bottom of my good walking sandals.

Grumble, grumble, cough, grumble, grumble. These are my favorite summer shoes! They support my crazy feet! What if I’ve ruined them? I kvetched as I walked along the roadside, trying not to step on any more tar and, instead, packed grass and dirt into the guck. Al said we could stop at the ice cream shack. We found some sharp rocks, and he was able to carve off most of the crud from the soles. When we got back to our rented house, he removed the rest with a putty knife and a nail. Then we went to the beach, Al’s pick.

This beach was next to the island marina. Al wanted to park our chairs with a good view of the moored boats. I wanted to walk a bit farther, but I agreed to his plan. After all, he’d rescued my sandals. As I set down my beach chair, I noticed a speck of cobalt in the sand, inches from the chair’s aluminum footing. It was a chip of blue sea glass, no bigger than the nail on my pinky.

That was the only piece we found on the trip. We walked miles of beaches, clambered over countless boulders, waded and swam in the ocean and trekked across sandbars at low tide. My cold waned and I caught up on my sleep. I discovered that the floaters are less visible when I look at multicolored and darker surroundings, and when I take off my glasses. My finger ulcers improved in the warm sun. I got a great tan. Time slowed.

Now, back home, having kept a morning business meeting, plowed through hundreds of emails and sat at the computer all afternoon, I wish it didn’t seem so long ago, already, that we were walking the beach. Later, I’ll layer this year’s sea gluncking finds to top off a jar on my bureau. And be sure to place the chip of blue where I can see it.

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.

Get a Grip

· · Leave a Comment

Last week, a small, black dot appeared in my right eye. No matter which way I looked, the dot moved with my eye, right in my line of sight. I figured it was a floater, one of those annoying little bits of vitreous gel that break away from your retina as you age, liquify and cast a shadow inside your eye. Nothing to worry about.

But it was in the way when I tried to read. And I’d never had one before, and its sudden appearance was unnerving. So, after putting up with it for a few days, I did some research and realized that this sudden onset required a check-up to be sure I wasn’t at risk for a retinal tear.

Of course, because I waited until later in the week, my optometrist was away for the Fourth of July weekend. It never fails that something odd and worrysome happens to me when it’s Friday night or a holiday.

Fortunately, I was able to get an appointment with another good eye doctor for late Friday afternoon, and he did a thorough check of my eyes from every angle. And, of course, the little dot had vanished. Just like that weird clicking noise in your engine that goes silent as soon as you bring in your car for a service check.

But he took me seriously, anyway, diagnosed it as an “incipient vitreous detachment” and told me to have a follow-up with my own optometrist in a month. And, he warned, if you see any more floaters, you need to be checked right away, because the vitreous gel could be tugging at the retina around the optic nerve and cause a tear. If you have blurred vision, see any sparks of light or have pain, you need to be seen immediately. The longer you wait, the greater the risk of permanent vision loss.

Necessary advice, but not great words for the anxiety-prone. So, naturally, on Sunday, I started noticing more floaters in my right eye. Not solid black ones, like the unwanted visitor that appeared last week, but pale, ringlike apparitions swimming around whenever I looked at the sky or a page in a book or my computer screen—like the amoebae you see in a drop of water under a microscope in high school biology, ghostlike, barely visible, until you know what to look for.

I thought, they’ve been here all along, and you’re just noticing them because you’re paying closer attention.

I thought, they’re new since last week and you’re going to have a retinal tear when you’re away on vacation.

I thought, this is ridiculous.

I thought, now you know what to blog about this week.

I thought, call your optometrist first thing Monday morning.

I took Ginger for a walk and made a nice summer dinner of gazpacho and a broccoli-rice-chickpea-carrot salad, with gorgonzola cheese and craisins, to take my mind off my eye.

Just as I finished cooking and turned to put the salad in the refrigerator, the bowl slipped from my grasp. Half the salad spilled on the floor. I dropped the f-bomb about a dozen times, then decided that the floor was clean enough, follow the 10-second rule of contact, the vinegar will kill any germs, and quickly scooped up as much as I could, put it back in the bowl and invited Ginger to lick up the rest. Which she did, with enthusiasm.

My meditation teacher says the one thing we can count on is that everything changes. I can’t keep the floaters from appearing in my eye. I can’t always keep a grip on a bowl full of food. I might have more vision problems on our Maine island vacation. It’s scary. Scleroderma is scary. Life is scary.

All I can do is give myself a hug, take a deep breath, pay attention, and deal.

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.