Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Too Much Stuff

· · 2 Comments

My desk is out of control. This happens every few months or so, when I’ve been juggling  a variety of projects at the same time, and I have a pile for this, here, and a pile for that, there. After a while, the piles start crowding out any space in the middle, and I feel like I have nowhere to work or room to think.

Then I start moving piles to corners of my office. Problem is, the piles get dispersed, but I don’t make a decision about filing or tossing and the clutter remains unresolved. It just seems to follow the biblical injunction to be fruitful and multiply.

This proliferating clutter seems to mirror what’s going on in my life. I’m trying to do too much. I know this. I know I need to make some decisions about priorities and focus. I’m working on it. The trick is to keep this from becoming yet one more project that piles up.

I used to pride myself on my ability to multitask—the modern-day badge of honor, especially for women who juggle family and career. It’s an important skill-set, sometimes crucial for getting through the day. But there is growing evidence that multitasking isn’t necessarily such a virtue. In fact, multitasking can actually reduce productivity by up to 40 percent.

It can also be fatal—as in texting while driving.

The older I get, the more I want to declutter—my desk, my to-do list, my home, my mind. I want to eliminate the stuff that isn’t necessary and concentrate on what’s really important. I want to be able to focus on one thing at a time and give it my full attention, then move on to the next. Quality over quantity.

Essential for any well-lived life, but all the more so when you are managing a chronic disease, spend too many hours in doctor’s appointments each month and want to make the most of the time you have, especially those days when you’re feeling strong and alert and have energy in reserve.

Where to begin?

It seems that whenever I clear my desk, I begin to clear my head. I’ve also found that making a series of small adjustments over a longer period of time—rather than undertaking a major, exhausting purge—adds up to a significant, nuanced change of habit.

So my goal is to pick one pile, one drawer, one small corner to declutter each day—a small project that takes only about 10 minutes. Over the course of a week or a month, I hope to clear my space and clarify my priorities.

The Jewish High Holidays come early this year, the first week of September. The weeks leading up to Rosh Hashanah, the Jewish New Year, are a time for reflection and introspection—how to do better, be better, mend what needs tending and start afresh.

There’s a lot more to it than clearing your desk. But that’s as good a place to start as any.

Photo Credit: Dimmerswitch 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.

Transitions

· · 2 Comments

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.

Road Trip

· · 2 Comments

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.”

Photo Credit: PR’s photo goodness 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.

In the Belly of the Beast

· · 4 Comments

There’s no such thing as a non-invasive test. Some are just more invasive than others.

Last week I found myself inside a clanging, banging, buzzing, bleeping MRI machine, undergoing a 25-minute diagnostic that was probably unnecessary, one of those just-in-case procedures you occasionally have to endure because one of your specialists needs to validate a hypothesis and define a baseline.

I’d had an MRI once before, at Boston Medical, lying on my back with a pair of headphones, listening to Ray Charles. The procedure was longer, but the music was good enough to distract me from the machine’s clanging, so the time passed relatively quickly.

Not so last week at an outpatient facility near home. First of all, the position was uncomfortable. I had to lie on my stomach, head in a padded masseuse-like cushion, arms forward, another pad pressed against my abdomen, ankles draped over some kind of wedge, like a swimmer frozen in a dead man’s float. Secondly, the music was lousy—a choice between two stations I dislike (pop rock versus easy listening) on headphones with poor reception. So equipped, unable to see around me, with an IV in my arm and a rubber squeeze ball to grasp in case of emergency, I slid backwards into the MRI’s gullet.

Buzzing soon commenced. Through the headphones, I could hear the tech’s voice alerting me that this first scan would take five minutes. BEEEEP. BANG-BANG-BANG-BANG. I could barely hear the music because of all the static in the headphones, let alone all that banging and clanging, and the song wasn’t anything I really wanted to listen to in the first place, but I hung onto the notes so as not to start feeling claustrophobic.

CLANG-CLANG-CLANG-CLANG. The music ended and the announcer started jabbering, followed by a lot of commercials that sounded like gibberish. I tried to figure out how many more of the five minutes were left by counting the number of ads. Finally, a moment of silence inside the machine.

BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. Another series of scans. I did my best to keep breathing without moving anything I wasn’t supposed to move. This was not easy, especially with the pad compressing my diaphragm. I practiced Pilates breathing, expanding the sides of my rib cage. I wondered if either of the techs had ever gone through this procedure. I decided this should be part of every MRI tech’s training.

The tech’s voice in my headphones informed me that she was now going to insert the contrast dye through the IV. I might feel a cool tingling, but if I took a few deep breaths, the sensation would pass. BEEEEEEEEEEP. BANG-BANG-BANG-BANG. Somewhere in the background, I could hear Billy Joel’s “Just the Way You Are.”

I tried to monitor the progression of the slightly cool dye through my veins. I have an allergy to certain contrast dyes, but I had been assured this was very safe. BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. So far, so good. I tried to focus on the barely audible lyrics as the machine moved through a series of five scans, grateful for the brief silences between each cacophonous set.

More commercials. Next up, “I’m Never Gonna Dance Again.” Yuck. The voice in the headphones said this was going to be the last set, a two minute scan. Thank goodness. BLEEP-BLEEP-BLEEP-BLEEP-BLEEP.

All of a sudden, I felt flushed and unable to get a full breath. I tried to calm myself, but my breathing was too shallow. I squeezed the rubber ball several times. The tech and her assistant were both in my headphones, slightly annoyed. This was the final scan, just two minutes left, what was wrong? “I feel like I’m going to faint,” I said, twice. The machine stopped. A door opened. I moved forward. Someone took my hand, probably the assistant. The tech reassured me it couldn’t be a reaction to the dye, I’d had it seven minutes ago and been fine, it was like aspirin, it would just pass through my system. The weird sensation lifted, and I was able to breathe fully again. Back into the belly of the monster.

BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP. Not a procedure for anyone with a propensity for migraines. I told myself it would be over soon and marveled at how anyone in their right mind could think all these decibels should be tolerated for the sake of more medical data points.

At last, blessed peace. The awful radio music ended, too. I could feel myself moving out into the open air of the room. As the tech removed the IV catheter, she noticed my bandaged fingers.

“Are you a nail biter?”

“No, I have scleroderma.”

“Oh.” Silence. She had no clue what I was talking about.

I sat up, slowly, feeling groggy. The assistant brought me a bottle of apple juice. I took a few sips and wondered aloud why the machine was so noisy. The tech explained that it had to do with the various levels of magnetic resonance. Then she added, “A man made it. That’s why it doesn’t work right.”

I was still a little woozy getting dressed, but relieved to slip my wedding ring back in place. Fresh air felt wonderful. I took another sip of juice as I relaxed into my car seat, Symphony Hall playing on my satellite radio, then realized I’d forgotten to ask when the test results would be available. But I didn’t really care. I’d hear soon enough.

Down the street was a car wash. No one was in line. As my Prius drifted gently into the dark, automated cavern, I lay back, listening to Brahms, drinking my juice, and watched the clear, fine spray wash the last traces of late winter’s grime from my windshield.

Photo Credit: digital cat  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.

Take Me Out to the Ball Game

· · 4 Comments

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.