Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

It’s Always Sunny in Philadelphia

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This past weekend, I flew to Philadelphia to spend a long-planned weekend with my younger daughter. We had originally intended to enjoy the Art Museum, dining out, and some quality mother-daughter time, to mark her birthday next week. I was also going as her support for a medical diagnostic procedure on Monday. But with the intensifying spread of COVID-19, the decision to travel was complex.

Driving to Philly from our home takes a good six hours. The flight takes under an hour from our local airport, which is a ten minute drive from our house. Under normal circumstances, it’s a no-brainer.

But flying is now fraught with worries about the risks of picking up the coronavirus in public spaces—and spreading it to others. My daughter was quite concerned for my health and willing to postpone my visit. I, however, was not willing to give up so easily.

Ultimately, after conferring with my long-time rheumatologist about my risks of dealing with the virus, and given that I have no coronavirus symptoms, nor have I knowingly come in contact with anyone who has traveled abroad to hot spots, I decided that I would make the trip. I took extra precautions, wearing latex gloves in the airport and on the plane, wiping down my seat belt, arm rests and head rest with disinfectants, not using the tray table. The flight is on a small American Eagle jet, and it was only a third full both ways, so no trouble staying three to six feet away from fellow passengers. No one was notably coughing.

I kept a wide berth from other travelers as I walked through and waited in airports. My daughter picked me up in Philly on Friday, and I sat a safe distance from my congenial Lyft driver on the way to the airport Monday afternoon. (I gave him a good tip, because business is understandably slow.) Al was waiting for me when my flight arrived back home.

Over the weekend, we had a very meaningful mother-daughter visit, with some important conversations about what’s happening and what could happen, a talk that could only occur in person. We ate in, took a sunny walk around the Art Museum (which was closed) and along part of the Schuylkill River Trail, did some sewing and crafts, and binge-watched Netflix series. I took her to her medical appointment, and, thankfully, all went well. Given all the uncertainty about travel in coming weeks and months, it was all the more important to visit now, when it was still possible.

Back here in Massachusetts, schools and universities are closed, restaurants and bars shuttered except for take out, and many people are now telecommuting. Public gatherings are restricted to no more than 25 people. My synagogue is closed, though conducting daily minyan via Zoom. My dentist is closed except for emergencies over the next few weeks. My weaving studio is on hiatus. My German classes are canceled this week and shifting to online next week. My gym is closed. Grocery stores and pharmacies are exempt from these restrictions, so far. Al’s work has shifted to a hybrid of work-from-home and in-person visits to his social work clients. I am well-accustomed to working from home, so my daytime schedule is status quo. Others are not so fortunate.

I’m sure that you, Dear Reader, are experiencing similar disruptions. None of us knows what is next. All I know is that I’m glad I went to see my daughter while I still could, and I’m glad I’m back home.

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.

Risk Assessment

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So, I’ve been wondering all weekend, what if I, what if we all have to self-isolate in response to the spread of COVID-19? The latest predictions, as confirmed cases and deaths here in the U.S. continue to climb, is that all kinds of restrictions are more than likely.

Thousands of Americans are already facing a range of constraints, from working from home for Microsoft in Seattle to cancelled classes at Columbia, Hofstra, and Yeshiva Universities in New York City—and everything, everywhere, in-between. Here in Massachusetts, a cluster of people who attended a business conference at a Boston hotel have come down with the virus, one Boston area school closed on Monday because of an infected parent, the St. Patrick’s Day parade has been cancelled, and the Governor is being peppered with questions about whether the Boston Marathon will be, too.

It just feels inevitable. The virus is already everywhere, and our lives are going to be disrupted for a while. So, what would it be like to have to stay at home (hopefully, only as a precaution, not because of having the virus, which is a whole other issue) for a couple of weeks?

Obviously, it pays now to stock up on essentials. I have all my prescriptions refilled, enough for more than a month. I have three boxes of latex gloves; plenty of canned goods, soap, and toilet paper; and enough hand sanitizer, for now. I even have a few surgical masks that I bought years ago for airplane travel, that I’ve never needed. Not as good as the N95 respirator mask, which should be saved for health professionals and people who are really at risk, but better than nothing.

Although I have some lung scarring from scleroderma, my rheumatologist tells me that it’s not significant enough to predispose me to pneumonia or make any recovery from infection more difficult. Which is a big relief. I’m certainly not going to try to test his theory, but it gives me more confidence about my risk level. Well worth asking.

So, back to my original question: what to do if I have to stay home for a couple of weeks? Fortunately, my work is already based here, so for me, unlike for many, that part is easy. Not true for Al, so we would have to absorb some income loss. I’m grateful that we could handle it, if necessary.

But two weeks is a lot of time to be stuck at home as a social precaution. One blog I read this morning actually had the best suggestion I’ve heard—learn something new. There’s plenty of free content online for perfecting a hobby you keep setting aside for lack of time, tackling that fabric stash for a sewing project, or learning another language. It’s also a good chunk of time to finally declutter your home (I’m talking to myself and my husband, here), or to read or reread those books that you never get to (and would otherwise give away because you’re decluttering).

With video chat, it’s possible to keep in touch with friends and loved ones and feel like you’re together, even when you’re not. It’s possible to organize support groups, to keep everyone’s spirits up during trying times. It’s possible to send kind and caring messages on social media, to counter all the fear and conspiracy mongering.

I certainly hope we don’t end up like Wuhan, China, or northern Italy, in government-imposed lock-down. But if we do face restrictions in movement to keep everyone safer and avoid a crush of cases that will overwhelm our health care system, then at least it’s worth considering how to make the best of a bad situation.

And, of course, there’s always Netflix.

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: Ryan McGuire

Wash Your Hands

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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

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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

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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