Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Transitions

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I made a cup of hot tea this morning. A few weeks ago, in the midst of July heat waves, this would have been unthinkable. But this morning it’s only in the ‘60s. August, yes. But this is New England.

I know, I know. If you don’t like the weather here, just wait a few minutes. It’s supposed to be a great week, mostly sunny, in the low ‘80s. Today is just a blip.

But my hands went painfully numb after I ate breakfast, my usual, Grapenuts with Lactaid and fresh fruit, orange juice. Everything was just too cold.

I’m not ready for this, not yet. Over the weekend, while taking a walk, I noticed a few leaves had fallen, harbingers of autumn. Six weeks past the summer solstice, and already the sugar maples on our street are beginning to sense the lessening span of daylight.

Back to layers—sweatpants, a short-sleeved sweater, a light sweater pullover, my fleece wrist warmers, socks, shoes. No doubt everyone else is in shirt-sleeves, shorts and sandals. I long ago learned that I have no choice but to accept the fact that I have to deal with my own broken internal thermostat, but the early signs of summer’s inevitable departure always get to me.

It’s a month for transitioning. In 10 days, Mindi will return from Israel after two years living and working in Tel Aviv, to begin graduate school back in the States. Though we’ve stayed in touch via electronic media, I haven’t seen her for a year. Until I can give her a big hug, I won’t believe that she’s finally home.

And this weekend, Emily returns from her live-in summer internship, soon to leave again for her senior year of college. Already, she’s taking the GREs, planning her grad school applications. How did this happen, so soon?

For the first time in four years, we will have both daughters home at the same time, both preparing for the fall semester. Sure to be a whirlwind of intensity, but I am looking forward to us all being together again, even for just two weeks.

Al and I still have a little vacation time planned for August, a few more days to get away from work and responsibilities before everyone gets home. A few more days to linger and relax in the warm afternoons yet to come.

The tea worked. My hands have returned to a comfortable level of blood circulation. Maybe I’ll be able to shed at least one sweater by afternoon. It’s sunny. The trees outside my window are a lush, deep green.

Hang on, summer. Hang on.

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.

Weather Spotting

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Hot. Cold. Hot. Cold. Hot. Cold. Hot.

‘Tis the season for unsettled weather, which always seems to be the case in New England. As the saying goes, if you don’t like the weather here, wait a few minutes.

My neighbors walk their dogs and tend their lawns in shorts, tee-shirts and flip-flops, but I’m still doing my thing with more layers than I’d like—long pants, a sweater or sweatshirt over a lighter top, my indispensable wrist warmers, socks and shoes.

I took the bold step of bringing my winter sweaters to the dry cleaners only last week, but missed them a few days later when we were deluged with cold rains that triggered my Raynaud’s and caused a messy leak in our basement. Why, I wondered, couldn’t the rain have fallen over Colorado’s burning Black Forest, where it was really needed?

Of course, you can’t control the weather any more than you can control a chronic disease with a mind of its own. The only thing you can control is the way you respond.

Managing my health takes much vigilance, many doctor’s appointments, good nutrition, regular exercise, taking all of my meds every day, tending my finger ulcers to ward off infection, getting as much of a good night’s sleep as I can, recognizing and managing stress triggers, appreciating love from family and friends, common sense, pro-active problem-solving and doing my best to stay positive. That’s the short list.

Dealing with the weather is a different beast. It’s not just about following forecasts so I know how to dress and keep warm. It’s also about trying to understand and not get overwhelmed by the strange shifts and extreme weather patterns we’re all experiencing. Fatal floods in Europe, record-breaking forest fires in the Rockies, the Oklahoma City tornado, last fall’s Superstorm Sandy—not a week goes by when there isn’t another extreme weather event somewhere around the globe. Lately I’ve been looking at the sky and feeling like it doesn’t make sense any more.

Mark Twain (or perhaps one of his contemporaries) famously said, “Everyone talks about the weather, but nobody does anything about it.” Well, I decided last week to do a little something. A bit of a weather geek to begin with, I drove an hour-and-a-half to Manchester, N.H., one evening to attend a three hour training as a National Weather Service (NWS) volunteer weather spotter.

Weather spotters fill in the observations that radar can’t pick up closer to the ground—like the size of hail or the siting of a funnel cloud, where there’s flooding or whether winds are strong enough to topple healthy trees. I can now explain how tornadoes form, what kinds of thunderstorms are the most dangerous and their warning signs. I have an official weather spotter ID and the number to call for our NWS bureau in Taunton, Mass., to report on signs of serve weather.

It’s my own small way of responding to climate change. If I can help to fill in the blanks about approaching storms, then maybe I’ll enable someone to get out of harm’s path.

It also gives me some sense of control, albeit illusory. At least I have a better understanding of what clouds signify and why hail falls and when to run to the basement.

In a perfect world, we wouldn’t have to worry about any of this—tornadoes that drop out of the sky and destroy elementary schools or diseases that appear out of nowhere and ravage our bodies. But the world is far from perfect. It just is. All we can control is our own response. This is mine.

Photo Credit: Nicholas_T 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.

What a Blast

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When I was little, one of my prized possessions was a Japanese fan, the kind you could snap closed with a flick of your wrist and spread open with your fingers, gently, so the paper wouldn’t tear. It was pale gray with hand-painted, pink-and-white blossomed cherry trees and gilt edging. I don’t know what ever became of it, but I could have used it this past week.

It was really, really hot here in Massachusetts.

So hot (’90s-muggy-record-breaking-air-quality-alert-hot) that our neighbor’s three dogs were outside, barking, at 12:30 in the morning because it had finally cooled down enough for them to do their business, and I’m sure she assumed that everyone else had their windows closed and air conditioning on and wouldn’t be disturbed.

So hot that our lawn must have grown three inches, one for each day of the heat wave, not unlike the corn that grew so rapidly on hot, humid days near my home in Central Illinois years ago that you could actually hear the stalks squeaking as they reached for the sun.

So hot that I, perpetually cold, broke into a sweat just sitting at my computer in my converted-porch home office, finally tried out our new heat pumps on their dehumidify cycle—and was grateful, so grateful for the instant relief.

One weekend ago, everyone was shivering and complaining that their heat was turned off and sweaters packed away. Five days and 50 additional degrees later, it felt like deep summer, already.

Climate change, anyone?

I love heat. It makes my hands and feet very happy. But there’s heat, and then there’s heat. My perfect weather is sunny, mid-’80s, low humidity, with a light breeze. High ’90s, with air so thick it clings to your lungs, is too much, even for me.

My annual summer dilemma usually surfaces mid-July, when we get a stretch of this kind of stifling weather and I can no longer make due with just open windows and ceiling fans. Air conditioning, which we have studiously avoided for years because of my Raynaud’s, then becomes a necessary evil—too cold to tolerate for more than about a half hour, but impossible for me to concentrate, without.

Our new heat pumps provide a miraculous compromise. I can set the kitchen on dehumidify, and it refreshes the entire first floor during the hottest part of the day. Or just flip on the pump in my office for a half-hour and then shut it off again as I enjoy the residual coolness. If it gets really bad outside, there’s an AC setting, too, but I haven’t broken down to try it, yet. We’ll be paying off the interest-free loan for the next seven years, but well worth the investment to have year-round, personalized, energy-efficient climate options in every room of the house.

Not so when I leave home, though. Whenever I enter and exit a commercial building in the summer, it’s as if I’m going between this past week’s two weather extremes—from the equator to the arctic, and back again. I always carry a sweater and my wrist warmers wherever I go, so I can quickly adjust layers to the interior climate change.

This makes dressing for special summer events a major challenge. This past Saturday, we had a family bar mitzvah to attend. What to wear? I remembered the temple from the last time we were there, a few years ago for the older sister’s bat mitzvah, as icy cold. But it was in the mid-‘90s, for crying out loud! Just once, just once, I wanted to wear a summer dresses without a bulky cover-up.

I decided on a sleeveless rayon knit—lightweight, but warm—with a cotton crocheted sweater. I brought along a rayon shawl and a pair of my fleece wrist warmers, just in case. Sure enough, as we entered the lobby, I could feel my fingers chilling. On with the wrist warmers, but, fortunately, no need for the shawl. As the AC cycled throughout the service, I countered by slipping my wrist warmers on and off, as needed.

I was expecting a similar experience at the reception, held at another location. But to my astonishment, the event space was—heaven forbid—comfortable.

So comfortable that I could actually take off my sweater and wrist warmers and enjoy the next few hours with family and friends in a sleeveless dress. I cannot remember the last time this happened. It must have been back in the 1960’s when central air was still a luxury.

Maybe this phenomenon occurred because businesses are finally starting to realize that you save money if you don’t crank the AC down to 65, which most people in their right minds and bodies can’t tolerate, anyway, for more than about 15 minutes.

Or maybe it was because their central air was malfunctioning.

Anyway, I was happy. Who knows? As the world gets hotter and we finally learn, the hard way, that we can’t suck all the fossil fuels out of our planet and pump CO2 into the atmosphere without dire consequences of extreme weather patterns, we’re all going to have to adjust, one way or another.

For my own part, I’d much rather wear a sleeveless dress and carry a beautiful Japanese paper fan to a summer celebration—because everyone finally agrees to keep the AC at 78 or even turn it off and open some windows if there’s a breeze—than tote a sweater, a shawl and a pair of fleece wrist warmers in a 90-degree heat wave.

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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.

Road Trip

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Hello, I love you, won’t you tell me your name?
Hello, I love you, let me jump in your game.

Taconic ParkwayI’m singing with Jim Morrison’s husky baritone, cruising west on the Mass Pike. It’s Sunday of Memorial Day weekend, drizzling, then raining, then sunny with patches of azure flashing behind wooly clouds, then pouring again, as I head toward the Hudson Valley to help Emily move home from college for a couple of weeks before she leaves for her summer internship.

Driving long distance is a meditation for me. As long as traffic isn’t onerous, I can focus on the present moment of the road before me while allowing the back of my mind to wander. Often, the answer to a problem I’m trying to solve will pop out of nowhere. During the dozen years that I used to commute 100 miles round-trip to Boston daily, I would do some of my best thinking during rush hour traffic jams.

But today, I’m just enjoying the classic rock road trip medley playing on my satellite radio and trying to keep my joints from locking up. I didn’t sleep well the night before, so singing words to old favorites is the best way to stay alert, and bopping to the beat helps me shift my weight so my back and hips don’t get sore.

If I ever get out of here…if I ever get out of here.

Wings will never rival the Beatles, but I still like McCartney. Most of the traffic, heavier than usual for a Sunday, drifts off the Pike at the exit to Interstate 84, heading, no doubt, for New York City and environs. Not yet few enough cars and trucks to set the cruise control, but easier from this point west.

Now that I don’t have to drive daily into Boston, I enjoy the road more. But commuting forced me to be a better driver. I had always been intimidated by heavy highway traffic, especially in and around a major cities, until about 17 years ago, when I agreed to participate in a study for new medication to treat Raynaud’s at Boston Medical Center. I had to drive into Boston once a month for a check-up as part of the study and realized the commute was not only doable, but I reveled in the sense of independence it gave me and the discovery that the city was more accessible than I’d thought. That led to the decision to seek a better-paying salary in Boston and twelve-and-a-half years as a marketing director in higher education. I had some hairy trips in bad traffic and nasty weather, but I never had an accident.

Working for myself now, I don’t miss the commute one bit. But on a day like today, I enjoy the feel of the road, the lush green landscape, the ever-changing sky. I just wish I weren’t quite as tired. Time to make a rest stop and stretch my legs.

Layla, you’ve got me on my knees.
Layla, I’m begging, darling please.
Layla, darling won’t you ease my worried mi-i-i-i-i-i-i-nd. . . . .

Thank you, Eric Clapton. Thank you Duane Allman. Thank you, Derek and the Dominos. No better song for driving, ever. More sun than rain, now, as I cross the New York border and head down the Taconic State Parkway.

I grew up farther south, along the Hudson, and there is something about the rolling landscape, the view of majestic blue Adirondacks on the horizon, the Dutch and Indian names for creeks and towns that feels comforting, familiar. I set my cruise control close to the 55 mph speed limit, sit back and glide up and down the hills. The Taconic is notorious for speed traps and deer. I will be glad to get out of the car soon.

Does anyone really know what time it is?
Does anyone really care about t-i-i-i-m-e?

Belting it out with Chicago, I finally reach the quaint Hudson River town near Emily’s college. Just a few more miles to go. The sun is out, it’s cool and windy. Rainbow pinwheels spin in a bakery’s front yard. The farm stand near the college is open for the season. I have figured out the structure for this week’s blog post.

I park behind the row of dorms near a few other parents, their cars crammed with luggage and boxes. Em arrives, smiling, with her bike and a few other items that we need to fit into my Prius. She’s already packed everything else into her sister’s Elantra that she’s borrowed for the year while Mindi is living in Tel Aviv.

The wind feels refreshing, now. It’s so good to stretch. We visit with a friend, drop off Em’s keys to the dorm that she’s overseen as a peer counselor (otherwise known as an RA) for the year, and go out for a late lunch at the local diner. The fish burger, sweet potato fries and tea revive my brain, a good thing. We have a three hour drive home, with me in the lead.

I switch from classic rock to jazz. Is it really possible that Em has just completed her junior year of college? Is it really possible that summer is almost here?

As we cross the Massachusetts border, the bottom arc of a huge rainbow bends from massive, scudding clouds to the Berkshires, below. I call Em, following several car lengths behind, on my cell. “Welcome back,” I say. “That rainbow is just for you.”

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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.

Take Me Out to the Ball Game

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Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.