Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Hamster Wheel

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Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q 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.

Defrosting

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Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus 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.

Tipping Point

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I got sick last week—not horrible, serious, life-threatening, needing-hospitalization sick. Just plain old rotten cold virus sick. But it was definitely not fun.

It started as swelling in my throat and chills on Monday, moved into achey joints by Tuesday, evolved into congestion on Wednesday, and by Thursday I was coughing and battling a very runny, stuffy nose. Lousy nights with poor sleep. Mornings hacking my guts out. On Friday, I forced myself out of the house to do a few important errands (like finally getting the snow tires on my car before the snow arrived Sunday night) and then struggled to work at my desk for the rest of the afternoon.

Now, none of this is out of the ordinary for a cold. It’s just that I feel it worse than I used to, mainly because my scleroderma exacerbates all the symptoms. Chills are really chilly. At one point early on, my hands were so numb I couldn’t pick up anything, and the only remedy was a hot shower. Aches are really achey. My left arm felt like I’d just had a tetanus shot.

Figuring out what to do about this is always a challenge, because decongestants can set off my Raynaud’s, too, and make my nose freeze. So I often rely on spray decongestant, but that has a boomerang effect if I overuse it, and makes the swelling worse.

So, feeling pretty desperate on Friday to breathe and relieve the muscle aches from too much coughing, I decided to try an over-the-counter liquid cold remedy. To my amazement, it actually worked without making me numb. Thank goodness! That and some adhesive strips to keep my very narrow nasal passages open, plus limited use of nasal spray, enabled me to get some sleep Friday night.

On Saturday, I stayed home to get more rest. Ironically, while reading a New Yorker article about a new treatment for insomnia, I passed out on the couch for another four hours. (Really, the article was interesting!)

When I woke up, miracle of miracles—I felt like myself again. It was as if that extra rest enabled all the working parts of my immune system to finally get the combination and overcome the virus that had been plaguing me for a week. I’m sure it actually took six days of microscopic activity to reach the tipping point from sick to well, but given how poorly I’d felt just 24 hours earlier, it sure felt like the extra sleep was the golden key.

A few days later, I’m still hoarse, and my energy is not 100 percent, yet. But I’m close, thank goodness. I’ll be even more vigilant using anti-bacterial gel every time I touch a debit card keypad and signing credit card slips with my own pen during cold and flu season. At least, that will give me the illusion of some control—and maybe some real protection against getting sick again, soon.

Meanwhile, it’s great to breathe again.

Image Credit: Illustration from Johann Remmelin, Pinax Microcosmographicus, (Amsterdam: Ex typographia Pauli Matthiae . . .; Voor Justus Danckersz, 1667); U.S. Library of Medicine, NIH; courtesy www.publicdomainreview.org.

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.

Biker’s Paradise

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In three weeks, it will officially be winter. But January temps arrived here last week, way too cold, too soon. Mornings and evenings in the teens, bitter windchill, the works—only the snow hasn’t arrived, yet.

All of this made me realize that I need to solve a big problem I’ve been ignoring—I need to replace my very worn-out, favorite, red-suede, insulated winter gloves. The holes in the right hand can’t be mended and are growing bigger with each wearing.

Now, for most folks, this is not a big deal. Especially at this time of year, stores are well-stocked with rainbow displays of gloves of all different materials, styles and warmth. But my fingers are much shorter than an average size 7 glove, what I’d wear if I had normal hands. I don’t.

Due to complications with severe Raynaud’s and my scleroderma, my fingertips have all resorbed to stubby nubs. The longest finger on my right hand is only 2¼ inches long. I often have several fingertips bandaged to protect my ulcers. So normal gloves always have about an inch of extra fabric at the top that flops around and makes it hard to pick up things. Also, the fingers are often too narrow to accommodate my bandages. Children’s gloves are too tight.

I lucked out with those red gloves several years ago at a random fundraiser trunk sale. They have Thinsulate lining and roomy fingers that are shorter than standard gloves. No tag. No way to trace their origins.

So, replacing them called for some creative problem solving. I turned to the Internet and googled “women’s gloves short fingers.” At first, all I found were gloves for cyclists without fingertips. I kept looking. There were sites for outdoor adventurers, but those gloves cost a fortune. Custom-made gloves were out of the question.

Then I discovered sites for bikers. A goldmine. It would never have occurred to me, but, of course, bikers need warm gloves for cold weather—sturdy, insulated, flexible leather gloves for gripping motorcycle handles.

The idea of walking into a biker shop, however, felt a bit intimidating. I’m sure I’m guilty of stereotyping, but I’m about as far from a biker as you can get. So I did some more online search and found a great biker retail store near Boston. They sell very affordable leather gloves in a range of sizes, with wide fingers that look slightly curved. Perfect.

I could have emailed, but I decided to call. A pleasant woman named Melanie answered. I explained my dilemma, that I have very short fingers and wasn’t sure what size to order.

“Oh,” she said, “you’re just like me! I have short fingers, too. I hadn’t thought about gloves, though, because I put my bike away for the winter.”

I confessed I wasn’t a biker and described the details of my hand issues.

“You’ve come to the right place,” she said. “Biker gloves come in all different sizes, for a great price.” This all made perfect sense. A real niche market.

She offered to go try on some gloves and report back. We determined that her tallest finger is about a half-inch longer than mine. A few minutes later, Melanie returned to the phone.

“I’m trying on this pair of smalls, and they are quite comfortable on me,” she said. “You might even try the extra-smalls.”

“Are you sure they’ll be wide enough across the palm?”

“I have very square palms,” she said. “Where’s that measuring tape?” She determined that her palm was 4½ inches across to the outside of her thumb joint.

“Okay, let me check,” I said. We were both laughing at this point, comparing these intimate details of our physiognomy. My measurement was about a half-inch shorter. The extra-small sounded like the right size. She assured me that the style runs to a triple-extra-small and likewise in the other direction, and that they take returns and exchanges.

I thanked her for her help and placed my order online. The gloves should arrive in a few days. If they don’t fit, I’ll drive to the store in my Prius, meet Melanie and find the right pair. I may be an unusual customer, but then, hands are hands. And it’s an adventure. Who would have thought my scleroderma would land me in a biker’s paradise?

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.