Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Pharmacopia

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Lately, it seems, I’m running to the vet or the pharmacy every week or so to refill a prescription.

Ginger, our 15-and-a-half-year-old Golden Retriever, needs a steady supply of her chewable, yummy, liver-flavored pills for arthritis, plus her chewable, yummy, other-flavor pills to help her cognition (I could use some of these, too, for those ever-more-frequent senior moments), and another pill for her thyroid, and another med for her arthritis (which I just discovered comes in pill form, not yummy or chewable, but considerably cheaper than the liquid version), plus a stomach acid blocker.

For me, there are about a half-dozen prescriptions to manage at any one time, one from a specialty mail-order pharmacy that requires a monthly blood test, and others that run out on a staggered schedule and require my attention every couple of weeks or so. Plus some vitamin supplements and over-the-counter meds to round out the mix.

I’m sure there’s a more efficient way to keep track of all this and probably some cheaper alternatives for Ginger that I have yet to discover.

I need to check out substitutions for some of my own meds, as well. Recently my deductible on two different scrips jumped from $25 to $50. One of these is a monthly refill. It all adds up, quickly.

Even still, I’m blessed with good medical insurance through Al’s employer (at least, that is, until we find out what the new plan will be for next year, since the hospital where he is a social worker was recently bought out, once again). One of my prescriptions would cost nearly $5,000 a month without coverage. Very sobering. I think about this every time I take one of those little pills, which I need twice a day. I try to be very careful not to drop one.

When I rise and before bed, I line up one set of pills and swallow them with water. Then, after breakfast and dinner, Ginger and I take pills together. Despite her age, she is actually very good about reminding me if I get distracted, because for her, medicine is a big treat.

Not only are the chewables yummy, but she enjoys having her other pills with a little butter, plus a scoop of low-fat ricotta and a little bread or left-over challah, to be sure the arthritis meds don’t irritate her stomach. She will start pacing back and forth to nudge me if I miss the timing, which she seems to know by the amount of daylight or lack, thereof, and where we are in our daily routine of meals.

I do not look forward to taking my meds, nor to constantly running to refill prescriptions, nor to paying for it all. It is just one of those things that needs to happen on schedule.

But I think Ginger has the right attitude. In her world, every day is an adventure to be savored.

My meds certainly help me feel a lot better than I would without them. They are a nuisance to manage, a growing expense. But I am extremely grateful to have access to the drugs I need in order to stay as healthy as possible.

Now, if they could only come in chewable, yummy flavors.

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.

Flying Lesson

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Last Thursday night, Al and I stayed up way too late watching a Batman movie. I was sitting on the bed, changing my bandages—a half-hour process these days, with so many finger ulcers—and he was relaxing, not yet asleep, but tired enough to skip channel surfing.

Somehow, we got hooked on Batman Begins, with Christian Bale as the Dark Knight. It wasn’t the plot—you know from the start how it will end. There were far too many commercials, and if we’d really wanted to watch the movie, we could have streamed it on Al’s computer with Netflix.

There was just something mesmerizing about the telling of the story, which revolves around Bruce Wayne’s struggle to overcome his childhood fears and the loss of his parents, and his quest to save Gotham City from the forces of evil.

I guess I’m a sucker for heroics, imagined and otherwise.

Plus, he could do all those neat tricks with zooming upside-down, snatching up the baddies from their lairs.

And he could fly.

When I was a kid, I used to wonder aloud what it would feel like to be a bird—to have wings and be able to soar around in the sky and land on a delicate branch, way up in a tree.

But much as I wondered about this, I was also afraid of heights. Sitting in a balcony at a theatre would make me anxious, that somehow I would fall over the edge. I was terrified of ferris wheels and roller coasters. When our family visited the top of the Empire State Building, I hugged the outer walls, not trusting the sturdy iron railings to hold (this was back in the day when the 102nd floor observatory was still open to the public).

So it was, nearly 20 years ago, when Al bought me a one-hour flying lesson at a synagogue fundraiser for my 40th birthday, that I thought he was out of his mind. I had certainly flown many miles in commercial airliners by then, but the idea of piloting a private plane was about the last thing I’d choose to do in my free time.

His inspiration for this gift was to give me a bird’s eye view of local landscape, to help my research for the book I was writing about the history of Worcester’s urban forest. I had been telling him all about regional geology and topography, my most recent fascination. I didn’t want to hurt his feelings, so I reluctantly accepted.

The day of my lesson that summer dawned sunny and clear. We met my instructor, a local DJ who went by the handle of Roger X, at the airfield, next to his yellow Cessna. He was jocular and confident, very reassuring as I nervously settled into the pilot’s seat, with him as co-pilot. Within minutes, we were taxiing for take-off. As we rose into the air, Roger let go of the dual controls. I was flying the plane on my own. I began to perspire.

Roger instructed me how to pull back gently on the controls to keep climbing. He told me that flying a plane was as safe as driving a car—the air pressure differential over and under the wings pushes you up. I knew this, I understood the physics, but my heart was slamming in my chest.

And yet. The view was spectacular. I had chosen to fly north, tracing the pattern of Central New England mountains. There were Wachusett, Monadnock, Tecumsah, plopped like dollops of pistachio ice cream, separated by many miles, but aligned. The glacial patterns I had researched suddenly made sense.

I banked the plane in a U-turn, following Roger’s calm instructions, and we headed back. He spoke to the control tower as we approached the airfield. He told me what to do, and to my total amazement, I landed the plane safely. I peeled my sweat-soaked shirt from the seat-back and climbed out on shaky legs.

Relaxing into Al’s congratulatory embrace, I thanked him. Sincerely. It had been, ultimately, exhilarating, one of the best birthday presents ever.

I haven’t flown a plane since (expensive hobby). But I still cherish the memory of that lesson. We each have our own reasons to be fearful, some grounded in stark reality and some imagined, but angst-producing, nonetheless.

When I get stuck, I try to remember: You never know what fears can be overcome, or what you’re capable of, until you try. Sometimes it just takes the push of the one who knows you best to get there. Especially when, in spite of yourself, you really do want to fly.

Photo Credit: Skyhawk4Life via Compfight cc

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.

Flowers at an Exhibition

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Just when it seems like it can’t get any colder, just when the wind chill hits sub-zero, just when my fingers are covered with bandages for seven—count ’em—seven ulcers from too much dry heat and bitter temps, along comes the Worcester Art Museum‘s (WAM) annual Flora in Winter exhibit.

A-a-a-a-a-h-h-h!

For four days, the WAM is filled with the scent of roses and hyacinths and peonies and more, arranged by regional floral artists to interpret masterpieces of fine art. It’s a great scavenger hunt through the museum to find each display. Al and I had a wonderful time visiting this weekend, and I hope you enjoy this virtual show of a few of my favorites to brighten your own winter blues.

"Portrait of a Young Lady," att. Willem Key Flowers by Susan Detjens
“Portrait of a Young Lady,” attributed to Willem Key
Flowers by Susan Detjens

 

"Young Shepherd with Sheep and Goats" by Jan Baptist Weenix and Bartholomeus van der Helst Flowers by Young Farwell/Helen Blazis
“Young Shepherd with Sheep and Goats,” Jan Baptist Weenix and Bartholomeus van der Helst
Flowers by Young Farwell/Helen Blazis

 

"Chapel of the Virgin at Subiaco," Samuel Finlay Breese Morse Flowers by Mary Fletcher
“Chapel of the Virgin at Subiaco,” Samuel Finlay Breese Morse
Flowers by Mary Fletcher

 

"Julie and Aristotle," Alice Neel Flowers by Sandra Tosches
“Julie and Aristotle,” Alice Neel
Flowers by Sandra Tosches

 

"The Sea Gull," Milton Avery Flowers by Robin Whitney
“The Sea Gull,” Milton Avery
Flowers by Robin Whitney

 

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.

Wake-Up Call

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I tried an experiment this morning: Eat a bowl of oatmeal and craisins without doing anything else—no writing, no reading, no New York Times crossword puzzle, no checking email or Facebook or surfing the web on my iPhone, no planning the week’s menus or my work schedule. Just focus on my breakfast.

This proved a challenge. I only partially succeeded. (As soon as I realized I had the lead for this blog post, of course, I had to take a picture of my cereal bowl and tea and the little meditation bowl that a friend gave Al for the holidays). But for a few minutes, I was able to focus, and noticed several things:

  • I love our kitchen. We bought our house in part because of the skylit space over our kitchen table and the view of the rock garden out back. It’s very soothing.
  • I taste more when I’m paying attention to my food. So often I’m thinking of a million other things when I eat that I’m surprised when I’m finished. This was a nice, warming breakfast.
  • There are annoying new floaters in my right eye that have been bugging me for over a week, now—really, sometimes I think I see a bug and it’s a floater.
  • I have to consciously check myself from going off into my head and starting to compose—this blog, a worry-story about what might go wrong today, a trail of images about my long to-do list.

I will try this breakfast meditation again, perhaps not every morning (hard to break the habits of an inveterate multi-tasker), but at least two mornings a week. It’s part of my ongoing effort to be more present in the moment.

My lack of presence was stunningly obvious one evening last week when I was driving home from Boston with a plan to stop at the supermarket. I turned onto the correct street, but then, instead of going to the store, ended up at the gas station right before the store. My tank was three-quarters full. I had no need for gas. But I didn’t realize my error until I started pumping.

I made it to the market afterward and picked up the correct groceries. But I was a bit shaken by how I’d been just too absorbed in too many concerns taking up too much space in my head to go directly there, in the first place. Maybe it’s aging. Maybe I need more sleep. Maybe it’s just one of those silly things that happens sometimes, when you go on automatic pilot without realizing it.

But it’s also the second time in a week that I’ve made a similar error, intending to do an errand at one store and landing at another, nearby, because I was thinking too much about other things and not paying attention to where I was going.

Conclusion: As 2014 arrives, my big goal for the year is to stay more in the present, less in my head, where anxieties—about health, family, finances, safety, what the future might hold—suck up more energy and effort than they are worth, especially since 95 percent of the stuff I conjure up never happens, anyway.

One of the pitfalls of being a storyteller. Better to pour it all into essays or fiction when I’m safely at my computer and not behind the wheel.

For you, dear reader, I hope you avoid your own wrong turns this coming year. May your 2014 bring you inner peace, good health and healing, fulfillment and prosperity, and breakfasts worth savoring

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.

Let There Be Light

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This time of year, around 7:30 in the morning, the sun paints a tipsy exclamation point on the wall above our bedroom radiator. It glimmers, stretches and slides on a downward slope away from the window, toward the radiator’s far corner, before vanishing within the hour. I welcome the annual arrival of this narrow shaft of light—a reminder that, even as the days are growing far too short, the winter solstice is barely a month away.

Sunbeam_bedroom_11-25-13I hang onto this promise. As soon as we switch the clocks back and it starts getting darker by 5:00 and then 4:30 and now 4:15, I feel as if everything constricts. It takes me nearly a week to get used to the relative time change. Then I start marking time until December 22—the first day of extra sunlight.

My other way of reassuring myself that winter’s heavy darkness will, eventually, lift once again is Hanukkah. The eight-day Jewish festival of lights, Hanukkah is celebrated by lighting one new candle each evening, just after nightfall. The candles are a reminder of miracles—how the Maccabees overthrew Syrian Greek rulers who had desecrated the Temple in Jerusalem, the Temple’s restoration and rededication, and how a single cruise of ceremonial oil burned in the Temple for eight days instead of just one.

Normally, Hanukkah falls midway in December, not far from Christmas, right around the shortest day of the year. With the addition of each new candle in our eight-branch hanukkiah, I feel the light returning.

This year, however, Hanukkah starts the night before Thanksgiving—an anomaly caused by the particulars of the solar-lunar Jewish calendar. This coincidence of holidays won’t occur again for another 70,000 years. That is, assuming humans are still around to mark the passage of time, the earth’s elliptical orbit around the sun and reasons to be grateful.

So what to make of the candlelight when I know the days are still getting shorter for the next few weeks? Delayed gratification? Reassurance that even as the temperatures here in New England have plummeted well below freezing at night, even though it’s still November and not yet January and I’m bundling up in layers and layers to stay warm, that the earth will soon reach its farthest distance from the sun and begin spinning closer once again?

Maybe I should focus on miracles. Gratitude generates its own candlepower. We have a warm house. I have enough warm clothes to deal with the weather and my Raynaud’s. When I switch on a light, electricity flows through wiring into an energy-efficient fluorescent bulb to brighten the room (even if it takes a few minutes). No horrible severe storms, yet, out our way. (Probably shouldn’t mention that one. Don’t want to jinx it.)

Then there’s the annual miracle of that narrow shaft of light each morning in our bedroom, November’s sunny greeting. Yes, it’s cold out, it seems to say. But the world keeps spinning. Gravity holds you firmly to the ground. There will be more sunlight soon. Minute by minute. Second by second. Stay the course.

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.