Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

Turn Around

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Most TV commercials, with their caffeinated, in-your-face blasts of sound and image, don’t stick in my brain like the ones from my ’60s childhood—the Madmen era of jingles and story-telling song ads.

There was one in particular that still tugs, a Kodak photo montage of a little girl growing up to become a young mother. The soundtrack—acoustic guitar and treacly male vocal—was “Where Are You Going?”, written in 1957 by Harry Belafonte, Malvina Reynolds and Alan Greene:

Where are you going, my little one, little one,
Where are you going, my baby, my own?
Turn around, and you’re two,
Turn around, and you’re four.
Turn around, and you’re a young girl, going out of my door. . . .

The Season I finale of Madmen alludes to this iconic commercial, when Don Draper lands an account with Eastman Kodak by creating a nostalgic slide show of his own family on the new Kodak Carousel—projecting the images he desperately wishes were true, even as he’s the architect of his marriage’s tragic demise.

Life is never so simple as we’d like it to be. I used to hate that Kodak commercial, because it was cloying and gave me a lump in my throat whenever I watched it. I didn’t like being manipulated by the images and the music, but it sucked me in, every time.

The commercial surfaced in my mind this week, as Emily returned to college for her junior year. She headed back on Sunday because she’s responsible for a freshman dorm once again (her first gig was this past spring, managing the high drama of an all-girl frosh dorm).

This, she informed us, was her last summer at home. And I have no doubt, she’s ready to live away on her own. In the two short months she spent with us, she was busy interning as a psychology research assistant, measuring math skill acquisition in preschoolers; baking some amazing desserts (strawberry rhubarb pie, raspberry lemonade squares, brownie drop cookies); sewing a dress with only some guidance from me and fitting assistance from a great seamstress I know; hanging out with friends; babysitting; working out (10-mile bike rides and mile-long swims); reading good books; catching up on favorite TV series; prepping for a tutorial this fall; and generally managing all of her personal affairs with great efficiency.

We spent a wonderful family day on Block Island and a great mother-daughter day on the Cape in Provincetown, visiting galleries, window shopping, buying hats and going to Race Point, then having dinner at the Yarmouthport inn where my family used to vacation when I was a kid. We saw Moonrise Kingdom. We enjoyed a Carrie Moyer retrospective at the Worcester Art Museum. We talked late at night. And we butted heads, mostly over stupid stuff, navigating—sometimes with quiet negotiation, sometimes yelling—the inevitable land-mined boundaries between mothers and grown daughters.

Twenty years ago, Em was a petite 5-month-old, delicate, kitten-like, just reaching the size of an average infant. She was born nearly 6 weeks early, only 3 pounds, 6 ounces, during a March snowstorm that prevented my obstetrician from reaching the hospital, at the end of a high risk pregnancy that culminated in pre-eclampsia, induced labor and a weeklong hospital stay.

We had known that she would need to arrive early. She was small for her gestational age, because my scleroderma was restricting my ability to deliver nutrients through my placenta. But the delivery schedule tightened further when I developed stomach pains on a Sunday and learned the next day at my check-up that my blood pressure had soared and I was spilling protein into my urine.

Reduced to a rag doll by magnesium sulfate to minimize risk of seizures, I lay around in my hospital bed, wondering what was next. Mindi, our oldest, had come to us through the gift of adoption. Getting pregnant had involved nearly a year of tapering down on d-Penicillamine, which I believe reversed my skin’s relentless tightening, and months of infertility work-ups and procedures.

I was scared. As I began the Petosin drip to induce what would become 19 hours of labor, I felt like I was falling off a cliff. A song from one of Mindi’s favorite videotapes, Rogers and Hammerstein’s Cinderella, looped endlessly through my head—In my own little corner, in my own little room, I can be whatever I want to be.

I didn’t really see Emily until the day after she was born, so tiny in her NICU isolette, her head no bigger than a delicious apple, feet no longer than my thumb. It would be a full month before she could come home at 4.5 pounds, and another month of concerted effort and help from a lactation specialist before she finally managed to nurse.

Turn around. The Em who agreed that we’d have a more peaceful goodbye if she drove back to school with just her dad is a gifted, bright, beautiful young woman, well on her way to making it on her own. We’ve come a long, long distance since she loved to be carried around, snuggling deep into her “bubble bag” sling wherever we went. There will be, God-willing, more great times together, and without doubt, more land-mined mother-daughter boundaries to cross. But I’m glad for her, very glad, that her last summer at home was a great one.

Turn around.

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.

 

You Know It’s Time for Vacation When . . .

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  • Your brain turns to sludge at the thought of starting a new project.
  • You would rather pet your dog than write another blog post.
  • You don’t care if your desk is a disaster area and how much more efficient you could be if you just cleared it off.
  • You begin drafting your “out of office” message a week before you’re out of the office.
  • You devote your creative problem-solving skills to convincing the family that it would be nice to go out to dinner for pizza instead of cooking something nutritious.
  • You find a dozen different fascinating questions to research online that have nothing to do with what’s left on your to-do list.
  • You stop adding items to your to-do list because you don’t want to do any of them.
  • Your body starts malfunctioning in all sorts of strange ways just days before you’re scheduled to leave town, causing you to need yet one more doctor’s appointment.
  • You can’t stand the idea of yet one more doctor’s appointment and try to talk yourself out of your symptoms.
  • You go to the doctor’s office after crying about your symptoms to your spouse and find out everything is stress-related and it’s time for vacation.

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

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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.