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Reflections on the Messy Complexity of Chronicity

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Evelyn Herwitz · May 10, 2016 · 4 Comments

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, inspiration, managing chronic disease, resilience

Sounds of Silence

Evelyn Herwitz · May 3, 2016 · Leave a Comment

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

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Filed Under: Body, Hearing, Mind, Smell, Taste Tagged With: managing chronic disease, Raynaud's, resilience, Sjogren's syndrome

Swell

Evelyn Herwitz · April 19, 2016 · Leave a Comment

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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience, travel, vacation

Turtling

Evelyn Herwitz · March 8, 2016 · Leave a Comment

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

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, managing chronic disease, mindfulness, Raynaud's, Sjogren's syndrome, tooth resorption

Election Season Survival Kit

Evelyn Herwitz · March 1, 2016 · Leave a Comment

12522068044_b73c88f4e9_zToday is Super Tuesday, and here in Massachusetts I’m headed to the polls to cast my ballot in the Presidential Primary. I’ve become a political junkie this election season. So much hangs in the balance for our country.

I do my best to keep on top of political news and analysis, but being a responsible citizen is also raising my blood pressure and keeping me awake at night. This is not good for anyone, whether you have scleroderma or not.

So I’ve discovered a few antidotes to election season stress, which I share with you, Dear Reader, in the hopes that we all can keep our sanity while doing our civic duty, staying informed and voting:

  1. Get the facts. Forget the misinformation, innuendo, insults, lies, Twitter rants and Facebook memes that have characterized this race so far. Find a reliable source of balanced reporting that goes beyond hyperventilating pundits and hysterical headlines. I recently discovered Nate Silver’s 538 website, which provides insightful, nuanced election analysis through a careful examination of polling data. It’s solid reporting. Reading their posts each morning helps me breathe and stay focused.
  2. Exercise. There is nothing like a walk in fresh air to clear my head of election season angst—that, and my Pilates class, or walking the indoor track and riding the bike at the gym. I can’t recommend it highly enough, whatever your favorite form of exercise. Just do it.
  3. Listen to great music. When I feel like I’m getting too wound up or depressed about the latest outrageous political headline, I immerse in wonderful music. Here’s one of my favorites, Gershwin’s Cuban Overture, performed by Lorin Maazel and the Cleveland Symphony (click on the link if you can’t see the embedded video):
  4. Watch Fred Astaire dance with Ginger Rogers. Simply the best, guaranteed to make you smile, regardless of what’s weighing on your mind, political or otherwise. Here’s a number from their 1936 classic, Swing Time, a great tap dance to “Start All Over Again” (again, just click on the link if you can’t see the video here):
  5. Look for the good in others. Despite all the darkness and truly depressing news we hear every day, and all of the candidates’ dire predictions about the future if we don’t heed their warnings, there are still good people out there doing good things. Keep perspective with a dose of positive stories from sites like David Freudberg’s Humankind.

None of this is to say we shouldn’t take this presidential election seriously. This is certainly the most important presidential race of my lifetime, one that will define the direction of this country for years to come. It’s never been more crucial to be an informed citizen and participate in the electoral process.

But it’s also essential not to get swept up in all the Sturm und Drang—especially when you’re managing a chronic disease like scleroderma that’s exacerbated by stress.

Hope this helps. And God bless America. Please.

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: DonkeyHotey via Flickr Creative Commons

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, mindfulness, stress

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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