Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Forward

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The maples on our street have finally shed their chartreuse flowers, unfurling palmate leaves, catching raindrops all last week. After too many days of dreary chill, the view is lime green. It finally feels like spring has arrived—dare I say—for real this time.

Violets sprinkle our grass. This seasonal reawakening is a favorite of mine, a time of new promise, fresh beginnings.

IMG_0500 (1)Emily graduated with her master’s in higher education last Thursday. Her goal: working in university disability services, helping college students with physical, emotional and learning challenges to succeed in their academic careers.

Her preparation has been far-reaching, a rich combination of academics and hands-on experience that began while she was still an undergraduate, touching on many aspects of student activities. This past year, among other involvements, she coached college students who were trying to overcome all kinds of obstacles to academic success.

Em has taken inspiration for her career goal from many sources and experiences—but one wellspring has been watching me deal with my scleroderma. We’ve had long conversations about this over the years (she has never known me without damaged hands), and she’s had a front row seat for my struggles and quest for creative adaptations. If ever there was a silver lining for my disease, Em’s career goal is certainly that and more.

Another part of her goal: to help build inclusive communities on college campuses that reject the social stigma of mental health issues and physical impairments. This is not an easy task. She began this effort as an undergraduate, and now it is, for her, a foundational aspiration.

Why higher education? Because colleges and universities are places where many young adults start to make choices of their own and define their values. The college years are a time to explore ideas and choose new personal directions. The university, at its best, creates an environment where conversations about important societal issues—such as how we treat others who are different from us—have significant potential to shape social attitudes in the future.

Idealistic? Absolutely. I wouldn’t want her to be any other way—even as disappointments down the road are inevitable. We can never make progress toward a world where people are accepted for all that they are, rather than rejected for all that they are not, without idealists like my 24-year-old daughter.

With Emily’s graduation, we no longer have any children in school. Both of our daughters have chosen the helping professions, tackling tough societal issues in an effort to make the world a better place. Dark as the future can seem these days, with so much at stake politically, environmentally, socially—here and around the globe—I am inspired by their commitments.

This Mother’s Day, I could not have asked for a better gift.

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.

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

Just Living

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rain-1199464-639x425It’s raining today as I write, a chilly, damp, late March Monday. I’m still in layers of sweaters. The heat is on. I’m wearing my spring green wrist warmers to thaw out my fingers and remind myself that warmer weather is on the way. Really.

But this is not what’s preoccupying me this morning. Nor are my latest episodes of living with scleroderma. (Should I write about the odd tic in my left eye? my search for adaptive tools? the challenges of getting dressed?) No. What’s on my mind is just living, right now, right here, wrestling with all that’s at risk around us.

There is the U.S. presidential election, which has me profoundly worried. I have no intent of turning this blog into a political platform for my personal views (or anyone else’s, for that matter). But I have become a political junkie, reading, watching and listening to the best news analysis I can find to stay on top of developments. I also am inexorably drawn to fiction and histories about the rise of demagogues and Fascism. And I am struggling with my own role: What should I be saying, writing, doing in response?

There are other issues that weigh heavily on my mind—not only the proliferation of terrorism, once again making headlines with last week’s attack in Brussels, but the insidious cultural conflicts fueling this evil; the growing disparities between the haves and have-nots of this world and where that will lead as our planet becomes more crowded (which is intrinsically connected to the rise of terrorism); the existential threat of global warming. And, again, I struggle with my response. What will I be able to say, at the end of my life, that I did to help set things right?

I am not one who can easily compartmentalize and shove all this to the back of my mind. In some ways, I envy those who can. I always have to catch myself from spinning in my head about all the what-ifs, whatever is making me feel vulnerable. These days, however, I feel like I’m in a constant state of orange alert. (Obviously, this is not good for my health—physical, mental or spiritual.)

By comparison, my scleroderma and the challenges it presents are just a lot of white noise. I’m confronted by it every minute of every day—how to pick up a cup, handle a pen, turn a key in a lock, put on a sock, brush my teeth. It is frustrating, angering, time-consuming, exhausting, sometimes painful, often a real nuisance. But it is not what concerns me most in my life.

What concerns me are my family, my art, my work, my friends, my community, my country, our planet. What truly preoccupies me is how to live a meaningful life, how to make my small corner of the world a better place. And this is the real point of writing this blog. Living with a chronic disease can absorb a lot of physical, mental and emotional energy—for many good reasons. But it simply is not and cannot be all that we are about. Scleroderma is only a piece of me. It is far from all of me.

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: Griszka Niewiadomski

Turtling

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I wish I could just roll out of bed and get ready for the day in fifteen minutes. Of course, this has been an impossibility for the better part of thirty years that I’ve had scleroderma. But for whatever reason, lately, I’ve been getting more impatient with the amount of time it takes me to get up in the morning.

box-turtle-1409099-640x480Maybe it’s the tease of spring in the air, or the fact that I’m so ready for longer days and shorter nights (at least Daylight Savings Time starts this Sunday).

Or maybe it’s the fact that I have seven digital ulcers right now, which drags out my morning routine.

In any case, there seems no way around the fact that I have to plan at least an-hour-and-a-half, and sometimes two hours, just to get ready for the day.

It starts when my alarm goes off. I don’t wake easily, no matter how well I’ve slept. So I have to plan for a half-hour from the time I set my alarm to the time I actually need to get out of bed, just to give my brain enough time to come to.

After the first of far too many trips to the bathroom (my internal plumbing needs time to wake up, too), I make the bed. It’s how I start moving and stretching and setting everything in order while I clear my mind for the day ahead.

Next I have to wash my tear ducts, first with warm water and then diluted baby shampoo. This is essential so my tears don’t get blocked during the day, a complication of Sjogren’s Syndrome, a secondary autoimmune disease that can accompany scleroderma. It always feels good, and washing my face with warm water followed by skin moisturizer also relaxes my facial skin. (I used to shower in the morning, but it added even more time onto my routine, so now I save that for evening.)

After my eyes are done comes the longest step—hand maintenance:

  1. Remove overnight bandages from my fingers and wash my hands and digital ulcers thoroughly.
  2. Wipe away any adhesive residue with baby oil and wash hands again.
  3. Swipe my fingers with an alcohol wipe. I also clean any mushy ulcers with a dab of hydrogen peroxide.
  4. Prepare all my bandages and cut pieces of absorbant calcium algenate silver dressing to size.
  5. Bandage fingers. Each ulcer takes three layers: Aquaphor ointment, dressing and bandage on top.

Sometimes I’ll do this in silence, as a meditation; other times, I’ll listen to music. Lately, I’ve been reading or listening to election coverage on my iPad while I take care of my fingers. The whole process of bandaging my ulcers takes about a half-hour.

Once I’ve cleaned up all the bandage wrappers and reordered the basket that holds my hand supplies, I take my medications and eye drops. Then I brush my teeth with prescription tartar control toothpaste, an hour before I eat (another maintenance step recommended by my dentist, related both to Sjogren’s issues and trying to hold onto my teeth as long as possible despite root resorption from scleroderma).

Then it’s time for a ten-minute series of stretches that help me to work out any kinks from the night and limber up for the day. Sometimes I’ll listen to music, sometimes not. I try to sit and meditate for a few minutes at the end of my routine, to get centered.

Now it’s finally time to get dressed and put on my makeup, comb my hair, clean my glasses and finish up. This includes using ammonium lactate cream on my feet before I put on socks, to protect my skin from abrasions. The amount of time involved depends on whether I’m just wearing relaxed clothes for work in my home office or dressing up to go to appointments. Skirts or dresses with stockings take longer to put on than a pair of pants and a top. Jewelry can be tricky, since it requires more coordination; I’ve become a scarf aficionado because scarves are easy to put on, colorful and warm.

Downstairs in the kitchen, while heating water for tea, I use a sinus rinse in the adjoining bathroom—another step in Sjogren’s maintenance. And after breakfast, I take my Ibuprofen, for managing joint pain, with some yogurt, which helps my GI tract function better.

It’s a lot to do, a lot to remember. I have my routine worked out as best I can. I wish it weren’t so complicated and often tedious. Sometimes I wonder how I’ll be able to manage all these tasks when I’m older and frailer and need help. Other times I wonder if I’d actually be able to save time if I had some help. But being able to take care of my own needs remains my priority for as long as possible.

So, I keep on plugging. Every morning, I feel like a turtle. Slow and steady, slow and steady.

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: Bill Sarver