Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

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.

Sounds of Silence

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I should be over my rotten cold by now. It’s been more than a week, for crying out loud! For those of you who read last week’s entry, I’m happy to report that my childhood friend was happy to get together for a rare Boston visit, despite my emerging symptoms. But by Thursday, I tanked. Not only was I sneezing and coughing. I lost my voice.

The timing couldn’t have been worse. We had a big weekend, celebrating one of my brother-in-law’s 70th birthday, with family visiting from all over the country. And I wanted to be there, and I could not just sit there. So I whispered and croaked through conversations. We hosted my other brother-in-law and one of his daughters as house guests, and both Mindi and Emily were home, too. It was great. Except I really shouldn’t have been using my voice, and I probably set myself back several days.

So now I’m doing my best to keep silent. This is not easy for a woman who is very verbal. On the one hand, it’s been a blessing to have a quiet house to work in so far this week. I can express myself via email and text messages and writing for clients, as well as through my own creative writing.

On the other hand, I can’t talk on the phone with anyone or conduct a meeting or get together with a friend or have a simple conversation with Al. Every time I speak, he tells me (with more than a hint of pleasure) that I need to rest my voice. He’s right, of course. There is no way to heal laryngitis other than silence. Even whispering is damaging (as Emily informed me via an article from Scientific American).

So over dinner Monday night, I wrote Al notes on a yellow pad and he spoke in response. Interesting way to communicate—totally different rhythm. At least I didn’t have to repeat myself. I wish I knew sign language.

I’m experiencing silence at another level, as well, because my left ear is blocked up. Even as my sinuses are finally clearing, my ear is not, yet. So external sounds like music on the radio are a bit muffled, although certain soft noises are quite clear (a dripping faucet, crinkling paper). And eating or brushing my teeth is amplified—as well as my tinitus. The ringing is really loud.

Scleroderma adds a layer of complexity, of course. Since I have Sjogren’s syndrome, I have to think very carefully about how to use decongestants, trading off the boomerang risks of nasal sprays with the discomfort of making dry mouth worse at night. Too much oral decongestant sets off my Raynaud’s. Adhesive nasal strips at night help my breathing but can irritate the delicate skin on my nose. Most of all, I need to do whatever is necessary to get a good night’s sleep. On and on it goes. Hard to be patient.

Fortunately (I certainly hope), my voice and hearing loss are transitory. But it surely makes me appreciate the challenges that those who live with permanent speech or hearing impairments have to deal with every day. I’m also very grateful to be able to work for myself at home and not lose income because I can’t report to an office setting when I feel this way.

Okay, enough complaining. Thanks for listening, Dear Reader, and may you avoid a rotten spring cold of your own. Be well.

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: David Di Biase

Ethical Dilemma

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It’s Monday evening. About nine hours ago, as I was preparing for a video conference with clients, I noticed a swollen gland in my neck. By mid-afternoon, my throat was gucky. By dinner time, I had chills. Now my head is getting stuffy and my right nostril is clogging.

A rotten old cold. Haven’t had one in months.

Illustrations of Ventilation by Lewis W. LeedsSo what’s the big deal? I have plans for Tuesday afternoon to meet up with an old friend whom I haven’t seen in well over a decade. She’s in Boston for a conference. We’ve been planning this get-together for more than a month. Do I stay home or do I go?

Colds—really, respiratory viruses—present an ethical dilemma. Are you actually so sick that you risk getting worse by going out, or giving it to someone else (your good friend from childhood)? Or do you just power through it and take your chances (for yourself and everyone else with whom you come in contact)?

Most people tend to favor the latter approach. Do what you want to do because, well, you want to. Go to work even if you’re under the weather because, well, you have to. It’s “only a cold,” after all. Everyone gets them. If you stay home whenever you have a little sniffle, you’re considered a hypochondriac or a baby.

But that is why colds are so ubiquitous. Respiratory viruses are highly contagious. Untreated, they can develop into much more serious, chronic health challenges, such as bronchitis or pneumonia, or trigger asthma. Your little sniffle can make someone else really sick.

When I ran a marketing department at a small New England college, I always used to tell my staff to go home if they were sneezing and coughing, even if it was “just a cold,” so they’d get better faster and not infect the rest of us. They appreciated it (most of them, anyway—some worried about using up sick time), and I believe our department was healthier and more productive as a result.

My natural tendency is to favor the ounce-of-prevention-is-worth-a-pound-of-cure approach, just because my own health requires careful management. I also think it really matters to take others’ health and feelings into account when weighing the should-I-go-or-stay decision. And yet—my friend and I haven’t seen each other in ages, and I don’t know when we’ll have another chance to get together anytime soon.

Complicating all this: It’s supposed to be a chilly, rainy day in Boston. Not my kind of weather under any circumstances.

What to do? After dinner, I emailed my friend and told her what was up. I don’t want to impose my germs on her, but I also don’t want to cancel our date without letting her weigh in. I said I’d let her know how I was doing in the morning. Then I loaded up on fish oil and Vitamin C.

Now I need to get a good night’s sleep. Maybe I’ll get lucky. This is a fast moving cold, and it could be resolved by morning (possible but unlikely). Or maybe I won’t feel all that bad, and we can just be careful. Worst case scenario: we can always Skype.

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: Illustrations of Ventilation, from Lectures on Ventilation (1869) by Lewis W. Leeds. Courtesy of Public Domain Review.

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