Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Swell

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I turned 62 on Monday, one of those in-between birthdays that aren’t a major milestone. But this time around, instead of wrestling with the feeling that I’m just getting older, I decided to do something I’d never done before. Every year is a chance to experience new things. Despite living an hour’s drive from the Atlantic, I’ve never been whale watching, and I’ve always been curious to see live whales in their ocean habitat.

The season opened this past weekend, so we planned a trip for Sunday. I found a great company, a family owned business in Gloucester that has a marine biologist as a tour guide and that participates in whale conservation efforts. I found a discount coupon online. I found a nice restaurant nearby. The weather looked promising.

Only one glitch—when I called about reservations, I learned that there were going to be gale force winds off the coast on Saturday (despite great weather here), so it was best to check back on Sunday morning to find out if the waves had eased. Fortunately, the report was promising on Sunday—still swells, but okay for sailing—so we set out for Gloucester.

We made it with minutes to spare before departure, after getting lost along the way. But the sun was shining, everyone was helpful and friendly, and we found a good seat along the starboard side of the ship. I came prepared with all my winter gear—warmest coat, hat, mittens, leg warmers—to beat the sea breeze chill. As our ship powered beyond calm Gloucester Harbor and began to hit some swells, I was fine, enjoying the ride, like a kiddie rollercoaster.

It took about 45 minutes to arrive at the edge of the Stellwagen Bank National Marine Sanctuary, where we had a good chance of seeing humpback whales feeding. Sure enough, as we drew closer, our guide informed us that there were at least two humpbacks off the port bow at about 11 o’clock. But when I got up with Al to move around and take a look, all of a sudden I felt terribly dizzy. I immediately sat back down and tried to regain my bearings, but the ship was dipping and swaying. I felt just awful.

Fortunately, one of the crew saw me and offered to help me walk to the stern, which was more stable, and sit down. She brought me a small cup of ginger ale, half a Saltine and a plastic bag, just in case. Al was right by my side. To my surprise, the food actually helped a bit (neither of us had eaten more than breakfast, and the fact that we’d arrived so late precluded any lunch—a good thing, as it turned out).

But I was still very dizzy, so we found a space on the starboard bench, and I lay down with my head in Al’s lap. The whales, however, remained on the port side. Not an auspicious beginning to our expedition. Then they swam under the boat and began to spout near enough so I could lift my head and see. With a graceful flip of their flukes, they slipped beneath the waves. We were able to note the distinctive black-and-white patterns on the flukes’ undersides, which, our guide explained, is as unique to each humpback as a human fingerprint. These two he recognized from file photos as Mend and Evolution, familiar visitors to the Stellwagen Bank.

I felt badly about depriving Al from seeing the activity on the port side, but he reassured me we didn’t want to try to move over there. Two big, beefy guys were losing their lunches. Later, we learned that we had been in the midst of eight foot swells. Lots of people got sick. So I actually held my own better than I’d thought.

As our ship motored to a better viewing location, our guide explained more fascinating facts about humpback whales—including that it’s the males who sing, and that their songs are unique to each breeding ground. One whale will start singing, and then another picks up the melody and modifies it a bit, to demonstrate his prowess to the females. This continues throughout the breeding season like a game of telephone, so by the end of the season, the whale song is completely different.

I closed my eyes (which helped my dizziness) and did my best to relax with the boat’s rocking, which also helped, and listened to the guide’s narration. Then, our tour group got lucky. A juvenile humpback breached halfway out of the water and flopped back. Of course, it was on the port side. But then the whale (we dubbed it Hubert Humpry in honor of this presidential election season—yes, we’re dating ourselves) swam toward the bow and breeched again. This time, I managed to stand up on tiptoes, hugging Al tightly to steady myself, to see the action.

Our guide explained that humpbacks breach for four reasons: to rid themselves of parasites, like barnacles; to help their digestion; to signal other whales with the sound of their hitting the waves (sound travels farther under water); and to play. Hubert, I decided, was definitely playing, because he was putting on quite a show, smacking the waves with his huge flipper and breaching at least a half dozen times, all around the ship. Magnificent.

Between the two of us, we managed to capture it on video. I include the edited version, above, for your enjoyment. (If you can’t see the embedded video, click here for another view.) But there is nothing like seeing these extraordinary creatures in person—even risking motion sickness to get there.

There is so much to learn, to see, to do. I’m 62.

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.

Too Late

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I hate waiting in doctor’s waiting rooms. If I were to add up all the time I’ve sat around over the past thirty-odd years because my docs were running behind, it would probably add up to at least a few months.

traffic-jam-1549835-639x478So I very rarely arrive the prescribed 15 minutes early. Rather, I’ve cultivated the fine art of arriving just on time, to minimize any additional wait because of inevitable delays.

This gets a bit tricky when I have appointments in Boston. Traffic can be unpredictable. My strategy is to schedule my appointments in the late morning or early afternoon, avoiding rush hour.

Usually this works. Not so on Monday. I was cruising along, right on schedule to arrive in my Boston Medical rheumatologist’s office at 1:00, when I hit a long line of traffic trying to exit the Mass Pike at the Prudential Center. This means nothing to anyone who doesn’t know Boston’s spaghetti noodle road system; basically, it’s a really long exit from a tunnel. You can’t see anything ahead of you but the few cars in front.

Forty-five minutes later, I finally arrived at my doctor’s office, a full half-hour late. The grace period is 15 minutes. I had called, twice, to let the office know I was running behind. As I entered the hospital parking garage, I got a call: my doc could fit me in at 3:40—only because someone had cancelled out. Nothing earlier available.

I was not happy. But there was nothing to be done. To turn around after driving more than an hour-and-a-half would have been a total waste of time. Throwing a tantrum wouldn’t change the situation. Why should others have to wait for me, if there really was an option to jump the queue, because I got stuck in traffic? Not their fault any more than it was mine.

At least I had some reading material with me. Might as well get lunch and then sit in the lobby, which has a great view, and read. So that’s what I did.

Fortunately, my rheumatologist was running on time. We had a good talk, I took care of some diagnostics afterward, and I beat it out of Boston just as the Red Sox opening game was ending and Fenway crowds were walking across the bridge that spans the Pike Extension.

It was too late to get to my Pilates class. But other than that, I accomplished everything I needed to. It was actually a pleasure to sit and read. I’d been trying to get to this book for weeks to check some historical details for my novel.

Lessons learned: It’s wise to allow more commuting time for Boston appointments so I don’t get stuck again. Always bring my laptop, just in case, to have the option to write. And as long as I have some interesting reading or writing to do, any big delay won’t really matter, after all. Getting upset about stuff outside my control is the biggest time-waster of all.

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.

Image Credit: Niall Crotty

Season’s Greetings

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IMG_0491 3Punxsutawney Phil is a liar. The prognosticating ground hog promised a short winter when he failed to see his shadow back in February.

Well, it’s the first week of April, and it snowed here Sunday and Monday. Today’s low is in the teens. My Pilates class was canceled last night because the roads were a mess.

Saturday afternoon when I took my walk, I was marveling at the green lawns, the daffodils and hyacinths in bloom, budding leaves. All that is blanketed in white, now. And even though I know the snow will melt in a few days and be forgotten soon enough, I’m just sick and tired of winter weather.

I’m tired of wearing layers of sweaters.

I’m tired of mittens.

I’m tired of leg warmers.

I’m tired of wool hats, chap stick and full-length down coats.

I’m tired of my hands turning blue and my digital ulcers smarting if I don’t pile on all that stuff.

Yup, I’m more than ready for consistently warm weather. (Hear that, Phil? The key concept is consistent.) We’ve had some crazy fluctuations lately, from balmy teases to frigid temps, sometimes within a period of hours.

I know, I know. It’s New England. “Wait a minute and the weather will change,” and all that. April here is finicky. I still have snow tires on my Prius (thank goodness).

But, come on. It’s enough already. You’ve had your turn, Old Man Winter. Give spring a chance. Is it really too much to ask for enough warm afternoons to unfurl leaves and unleash the smell of freshly turned soil? Do you have to freeze the tulips before they’ve flowered?

I’m not the only one asking. After such a long, dark season of too much political angst and bad news, we could all use a boost.

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.

Thumb’s Up

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I’ve been getting clumsier in recent months. I drop all kinds of things—keys, coins, bottle caps, you name it, anything that involves dexterity and a good grip.

hands-1436113-640x480The other day I was cooking and picked up a full bottle of olive oil by the top, not realizing the cap was loose. Unable to hold on (fortunately, the bottle was plastic), I dropped it on the kitchen counter, spilling oil all over my favorite cookbook.

The cookbook is now well stained—not a disaster, once I unstuck the pages, since I consider my spattered cookbooks to be well-loved, like the Velveteen Rabbit. But still, I wish I hadn’t made such a mess.

There’s a good explanation for all of this klutziness: My right thumb (I’m right-handed) has built up layers of dead skin over abnormal thickening. It’s gotten so bad that it’s becoming difficult to hold even a pen or pencil. I’ve been tolerating this as best I can, bandaging it and even applying some urea emulsion cream that I got from my podiatrist to try to loosen the layers so I can remove them.

But none of this has really worked, and I realized this winter, when Al’s employee health insurance coverage improved (thank goodness), that it was time to see my (once again affordable) hand surgeon at Boston Medical and get his assessment. I knew my thumb needed debridement, and I knew I couldn’t possibly do it myself.

It took two months to get in to see him, but I finally had my appointment last week. It’s been years since I last needed his help—once to remove stubborn calcinosis from my left thumb that had adhered to the bone, and another time to remove two surgical pins from my right index finger, left from previous hand surgery to correct a severe flexion contracture, which were causing pain.

Seeing him was well worth the wait. He is the antithesis of the stereotypical surgeon—patient, empathetic, willing to discuss all options at length. He took a look and commented that some of the pain I’m experiencing is probably due to more calcium stuck under all those thick layers of skin—right at the pressure point (why I can’t hold onto stuff).

I mentioned my bad reaction to lidocaine with epinephrine when I had calcium removed from the bridge of my nose last month. “I never use that combination with scleroderma patients,” he said. “The epinephrine causes the blood vessels to constrict.” Who knew? My other doc (and his resident, who gave me the shot) should have. And this is why I love my hand surgeon—he understands this disease really well.

He was not gung-ho about operating, because of all the risks of infection and my poor digital blood circulation that exacerbates healing. But he explained the choice as one of two options: either continue to live with it, as best I can, or solve the problem surgically. “That’s what we’re here for,” he said.

We agreed that I’d come back to see him in May, get a hand X-ray and discuss how to proceed. I could either have the surgery later that week or wait until June, when the weather is warmer (I hope), to boost the healing process. I have to balance my desire to take care of this as soon as possible with the most favorable conditions, including adequate time for my thumb to recover, pacing between family celebrations at the beginning and end of May, and anticipated balmy weather.

Of course, I can only guestimate the latter—the day of my appointment, the mercury hit 77° F, a record-breaking day in Boston for early March.

But at least there is a solution in sight. Meanwhile, I’ll just need to be more mindful when I pick up the olive oil bottle, or my house keys, or spare change from my wallet. And give myself a pass next time I drop something else.

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.

Image Credit: Tibor Fazakas

Gym Date

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chiseled-abs-1230552-640x480Last time I saw my cardiologist, he made the brilliant suggestion that I try to find an indoor track at a local college, so I can keep up my walking practice when the weather gets too cold. I need the aerobic exercise to build up my endurance and stay strong. His idea was a very good one, especially given the past few days, when the temperature here one morning dropped to -16° F —without the windchill.

As it turns out, there just so happens to be a local college five minutes from our home, where Al earned his master’s many moons ago. So that makes him an alumnus and me a spouse of an alumnus, which gives us access to their wonderful recreation facility—including an indoor track. We also get alumni pricing, which is about a third of the cost of the community gym I had joined last year (and barely used).

So, a couple of weeks ago, Al and I went over to the college on a Thursday night for a tour of the facilities. Now, I’ve read about undergraduate institutions building great health and fitness spaces to attract students. This place is no exception. It’s clean, well-equipped, well-lit, with plenty of exercise options, a beautiful indoor pool and an elevated indoor track that encircles the gym. The track is made of some kind of rubber, so it’s easy on your feet. And we get to use the faculty/staff locker rooms. (Given how long it takes me just to tie on my sneakers, this is a good thing.)

We have since joined and made it to the gym three times together, with Thursday being our date night. Al and I both do the track, though he combines running and walking. I also ride one of the stationary bikes. Al is experimenting with the exercise equipment, weights and swimming laps.

I was a bit wary, at first, of being around all those healthy young undergrads. We certainly stand out, with our 60+ physiques and graying hair, amidst all the cute girls with their perfect thighs and bouncing ponytails, and the cute guys with their flat stomachs and strong shoulders. But the front desk staff have been very polite and welcoming, and no one really pays us much mind. We’re just part of the mix.

That’s fine with me. Actually, I find the youthful vibe invigorating. It’s fun to watch the baseball team as they practice hitting balls against wall mats down in the gym as I walk my laps, or the Frisbee team tossing and catching, or whoever else has the space reserved. I draw energy from the young adults who zoom past me or race on the treadmills in the room with all the stationary bikes. And it’s fun to wave to Al as he speed walks or jogs around me.

We both feel better. And it sure beats feeling trapped inside in sub-zero temps. I still hope to keep walking outside when weather permits. I’ve also found a great Pilates studio for full body workouts once a week. But it’s nice to have a good gym buddy, too—especially when he’s your honey.

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.

Image Credit: Thom W