Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Wash Your Hands

· · Leave a Comment

Every day brings more scary headlines about the coronavirus. Along with all the other bad news screaming for our attention every day, it sometimes feels like we’re all on the Titanic, heading inexorably toward that fateful iceberg.

But here’s the good news: One of the best ways to avoid getting COVID-19 is also the most simple and easily accessible: washing your hands after coming in contact with public spaces. Think about ATMs, touch screens at check-out counters, doorknobs, subway hand-straps, gas pumps—you get the idea.

I’m aware of this all the time because I have to be so careful about picking up an infection in one of my digital ulcers. While hand washing is the best option (20 seconds, about as long as it takes to sing “Happy Birthday” twice), I rely on hand sanitizer because I can’t get my bandages wet, and the sanitizer dries quickly. Use sanitizer that’s at least 60 percent alcohol and rub until it’s gone.

Likewise, the best way to avoid spreading the coronavirus—or any other contagious illness—is to practice good hand hygiene out of respect for others. That, and staying home when you’re sick.

Hand washing has been a cultural and religious ritual for millennia. But only since the mid-19th century has good hand hygiene been linked to better health in Western civilization. A Hungarian doctor, Ignaz Semmelweis, is credited with first discovering the connection in 1846 when he noticed that women giving birth in the doctor/student-run maternity ward at Vienna General Hospital had a much higher mortality rate than those in the adjacent midwife-run maternity ward.

Semmelweis determined that the doctors and medical students typically made rounds in the maternity ward right after doing autopsies. Midwives, of course, did not perform autopsies. So he figured that some kind of “cadaverous particles” were being transmitted to the pregnant women. His solution was to require all doctors and medical students to wash their hands with chlorine before treating his patients in the maternity ward—and the mortality rate dropped significantly.

Less than a decade later, Florence Nightingale championed hand washing in an Italian hospital during the Crimean War and also successfully reduced the rate of infections.

While Semmelweis and Nightingale were primarily fighting the spread of bacterial infections, hand washing works for preventing the spread of viruses, too. We’re all touching our faces more than we realize. COVID-19 spreads through droplets of fluid, from face to hand to surface to hand to face. All the more reason to wash or sanitize hands after being out in public.

It will be weeks and months before we fully understand the nature and true risks of this new disease. The number of people infected is certain to increase, both because of the exponential transmission rate and the fact that more people are being tested and detected. There is real reason for concern and vigilance. We need accurate facts, reliable reporting, and scientific leadership, not conspiracy theories and blame games.

In another time of high public anxiety, during the Great Depression in 1933, newly-elected President Franklin Delano Roosevelt reassured the nation with these famous words: “[L]et me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Those are words worth remembering and repeating right now. That, and go wash your hands.

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. Please view Privacy Policy here.

Image: Daniel Levis Pelusi

Viral

· · 4 Comments

Most weeks, I write this blog on a Monday, and this week is no different. I often don’t know what I’m going to write about until I get up that morning. Last Monday, however, it was good that I’d planned ahead with a photo essay, because I was just barely recovering from a really nasty stomach bug that had dogged me since Saturday evening.

This happened, of course, on a weekend when Al was out of town. For a good 24 hours, I could barely tolerate liquids. Monday morning, after a rough night, I did a little internet research and found a homemade electrolyte recipe for a mix of hot water, honey, lemon juice and salt. This helped enough that I no longer felt woozy, and I was gradually able to munch on rice cakes with a little date spread, to boost my energy with a slow metabolizing sugar. By mid afternoon, I had bounced back enough to return to my normal schedule.

It took a few more days for my system to fully right itself, but my point is, one week later, I’m feeling fine, thank you.

Our bodies, even when they don’t work perfectly, do have an amazing capacity for self-healing. Common sense, being attuned to symptoms when they first arise and responding accordingly, patience—all go a long way toward recovery. Obviously, this includes getting appropriate medical attention and treatments when warranted.

I’ve been thinking about all of this while watching the news about the spread of the coronavirus throughout the world. As of Monday morning, there were nearly 17,500 people who had contracted the flu-like disease in a few short weeks, mostly in China, and 11 in the U.S., including one here in Massachusetts. At least 362 people have died and 530 have recovered. The World Health Organization (WHO) has declared the virus a global health emergency, travel restrictions on flights to and from China are in effect, analysts warn of market instability, and surgical masks are sold out everywhere. Sadly, predictably, anti-Chinese xenophobia is also on the rise.

The prospect of a deadly worldwide pandemic is certainly terrifying—but the reality is that this virus is not nearly as deadly as this year’s version of the flu, an annual occurrence that we take for granted. Plenty of people don’t even bother to get a flu vaccine, even though it’s covered by most insurance policies. According to the Centers for Disease Control, there have been more than 107,000 confirmed cases of the flu in the U.S. since last September, and the virus is prevalent throughout much of the country. It has affected as many as 26 million Americans and is responsible for at least 10,000 and possibly 25,000 deaths.

That’s in four months. So why are we all so fixated on the coronavirus? According to the WHO, 2019-nCoV can cause mild, cold-like symptoms, like runny nose, fever, and cough. More severe cases can cause shortness of breath, which can lead to breathing difficulty or pneumonia, and, in rare cases, death. People with compromised immune systems are at greater risk (but that’s basically true for any disease). That said, this year’s influenza strains certainly pose a much greater health risk, at least, as far as we know.

Bascially, it all comes down to this: We’re used to the flu season. It arrives around October and ends around April. We know what to do (even if we don’t all do it). The coronavirus is spreading exponentially with an unknown trajectory, which feels threatening, and there’s no vaccine, because it’s a novel virus. Any vaccine would take a year to develop and produce in large enough quantities. And people have died.

There is every good reason to treat this virus as a serious public health emergency to contain its spread. But panic isn’t going to help anyone. If we can take the flu in stride (perhaps more than we should—it would be great, for example, if employees had incentives to stay home when sick instead of having to trade off health with cost of lost income), then we should be able to use commonsense hygiene and treat others with common courtesy when our coughs and sneezes are clearly putting them at risk.

The fact that flu seasons end every year, even when about half the country doesn’t get vaccinated, means that many people are able to heal and build up immunities, despite what truly is a deadly virus. I want to be clear that I am absolutely not arguing against vaccination, especially for those of us with chronic autoimmune diseases. I’m just saying that freaking out about the coronavirus is a waste of time and energy.

Better to stock up on soap and sanitizer, get medical attention when you need it, and treat others when you’re sick as you wish they’d treat you.

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. Please view Privacy Policy here.

Image: Dominik Martin

Sugarplums

· · Leave a Comment

As I write on Monday morning, snow melts off the roof of my home office, tap-tapping on the sill below. The droplets catch the sun, like streaks of liquid gold. Yew boughs glitter and sway in the light breeze.

Still, it’s quite cold outside, with highs today only in the low ’20s. I’m glad for my renewed gym membership, knowing I can walk and ride the bike despite the frigid air. (And, yes, I hit my goal last week of three workouts!)

Memories come in odd flashes. As I was getting dressed, trying to figure out how many layers I needed, I suddenly recalled a particularly cold day in the second grade. Back then, freezing temps would not have stopped our teachers from sending us outside for recess. As long as the sun was shining, we were on the playground, tossing rocks for hop-scotch, twirling jump ropes, climbing the jungle gym, swinging on swings, playing dodge ball.

But on this particularly cold day, a few friends and I were complaining to the recess monitor, a woman with a dark-brown, Jackie-Kennedy-style coif, scarlet lipstick, and a kind disposition, about the fact that we didn’t want to be outside. She was our favorite monitor, possibly one of the moms, though I don’t recall. “You’re just a bunch of sugarplums,” she teased. “It’s a beautiful, sunny day!”

Our seven-year-old response was to link arms and march around, chanting, “It’s cold, it’s freezing, it’s terrible! It’s cold, it’s freezing, it’s terrible!” She laughed, and we did, too. At some point that seemed like forever (probably after a mere 20 minutes), the bell rang and we gratefully retreated to the warmth of our classroom.

I am, still, indeed, hypersensitive to the cold—though not due to any (implied) weakness of strength or character. Remembering that day, I have to smile, but I’m glad that, in our own childish way, we stood up for ourselves. (Back then, girls had to wear skirts and dresses to school, so our legs were pretty darn cold.)

At the same time, our recess monitor made an important point. Focusing on the negative wasn’t going to help us one bit to stay warm. Running around would have been a better idea, soaking up the sun and generating our own heat. Linking arms, our improvised solution, helped, too.

Some 59 years later, those lessons still shimmer in my mind. Focusing on the negative, overwhelming as the challenges may seem, won’t get us anywhere. Standing up for our truths matters. Linking arms helps.

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. Please view Privacy Policy here.

Image: Nine Köpfer

Cup of Kindness

· · Leave a Comment

Last week I said farewell to my long-time rheumatologist at Boston Medical Center. Dr. Robert Simms has been my trusted scleroderma expert for 22 years. He’s moving on to semi-retirement in New Hampshire, and I wish him only the best. But I will miss him.

We first met when I participated in a BMC research study on treatments for Raynaud’s. The project was directed by the late Dr. Joseph Korn, who founded BMC’s scleroderma program in 1993. I ended up in the control group, so I did not directly benefit from the study. But I did gain a fledgling relationship with Dr. Simms, who was also involved in the research. Soon, he became my go-to specialist for managing chronic infections in my digital ulcers, and, eventually, my primary rheumatologist.

I also gained some confidence from driving into Boston for my monthly research study check-ins. Up to that point, the idea of an hour’s commute from home seemed like a major undertaking, not to mention the terrible (deservedly so) reputation of Boston drivers and traffic. But after a few trips, I realized I could actually manage it quite well. That aha moment led to my realizing I could commute to Boston for a job, and my eventual dozen-plus-years stint as a marketing and communications director at a small Boston-area college.

I surely have not missed the daily commute for the past decade since I left the college, but I’ve continued to drive into Boston (or take the train, when possible), for a variety of commitments, including my regular, 4-month check-ins with Dr. Simms. Whenever we’d meet, he would always take whatever time I needed to fully discuss any issues, as well as to catch up on life. A leading scleroderma researcher, he gave thoughtful, conservative advice. His referrals to other BMC specialists who also understood this complex disease were consistently excellent. I’ve been blessed to be in very good hands.

I trust that will continue to be the case. He introduced me to his protege, who has been with BMC’s scleroderma program for the past seven years, is deeply immersed in research and care for those of us with this complex disease, and seems equally personable, as well. Relationships, especially with even the best physicians, take time to build mutual trust. I’ve grown older with many of my specialists, baby boomers all. So, I’m that much more grateful that I didn’t have to lift a finger to make a smooth transition with such a key member of my medical team.

As we celebrate the arrival of 2020 at midnight tonight, many around the world will join with friends to sing Auld Lang Syne. The phrase literally means “old long since”—or, for old time’s sake. This New Year’s, I’ll drink a cup of kindness to you, Dr. Simms. Thank you for everything.

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. Please view Privacy Policy here.

Image: Ben Wilkins

Random Act of Kindness

· · 2 Comments

Last Friday, in-between a routine echocardiogram and an appointment with my rheumatologist at Boston Medical Center, I decided to get a bite to eat. It was around 11:00, not quite lunchtime, but I knew I wouldn’t get home until mid-afternoon. Better to tackle the hour-long drive and run errands on a full stomach than get worn out before I could sit down at my own kitchen table.

I found a nice local diner, just a short (very cold) walk from the BMC campus, warmed up with a cup of tea that steamed my glasses, and enjoyed a hearty brunch of scrambled eggs, an English muffin and home fries. The diner was cozy and crowded. I had never been there before.

There was ample time to walk back for my second appointment when I asked the waitress for my check. A few minutes later, she returned empty-handed. “Someone paid for your meal,” she said. “You don’t owe anything.”

“How is that possible?” I asked, astonished. “I don’t know anyone here!”

She shrugged and smiled and suggested that Santa had delivered a gift. I thanked her, and sat there, marveling. There was no indication that this generous soul had paid for everyone. Why single me out? Who could it be? Fortunately, I had some cash in my wallet, so I gave my waitress a good tip. It was the least I could think of in the moment.

Walking back to BMC in bright sunlight, I pondered what had just happen. I’d heard of gestures like this, certainly, but never been the beneficiary. The cynical voice in my head wondered if it was some kind of social psychology experiment, to see how people responded to such an anonymous gift. But it didn’t really matter. Someone chose to do me a kindness. How lovely! And it gave me a real boost that lasted all weekend.

As 2019 draws to a close, a year of so much dire news, it’s uplifting to remember that there are many good people out there, who never get headlines, ushering light into the world. With Hanukkah and Christmas coinciding this week, we can use all the light we can find—and bring to others.

In that spirit, whatever your tradition, best wishes to you and yours for the holidays!

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. Please view Privacy Policy here.

Image: Gaelle Marcel