Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

anxiety

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

And a Good Time Was Had by All

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For years, Al has been telling me and our daughters about Woodstock. He was 18 in August of 1969 when he accepted an invitation from friends to drive from Massachusetts to Max Yasgur’s farm in Bethel Woods, N.Y., for what he thought was “some kind of arts festival.” Indeed. Amidst 400,000 others, he and his friends managed to plant their sleeping bags a third of the way up the hillside from the huge soundstage, with a great view of all the acts—except for Jimi Hendrix, because they left before he closed out the show, since they wanted to get back home and had tickets for his upcoming Boston concert. But that show was cancelled. A year later Hendrix died of a drug overdose. Al regrets the decision to leave early, to this day.

One of the acts he did see, close up, was the Saturday afternoon breakout performance by Carlos Santana and his band. So when we learned that Santana was headlining the Saturday evening fiftieth anniversary of Woodstock at Bethel Woods this past weekend, Al really, really wanted to go and share one of his fondest experiences with the three of us.

It took some convincing. I’m not a fan of huge crowds. Tickets cost nowhere near the $18 Al paid fifty years ago. (Really. He still has the ticket stub.) Affordable lodgings were hard to find. The timing was not great given other travel plans. And what if it rained? But it meant so much to my husband that I agreed. Our daughters were enthusiastically on board. I found us an Air BnB a half hour away, got tickets before everything sold out, and worked out all the logistics. And, boy, was it worth it.

The grounds at Bethel Woods Center for the Arts, now an established performance venue, are beautiful, bucolic, and immaculate. There is plenty of room to stroll around, even with a sold-out crowd. We spent the afternoon checking out the sites, walking down the hill to the spot where Al and his buddies listened to the ’69 show (this is no longer the concert area, but a well maintained lawn with the footprint of the original sound stage at the bottom), had our picture taken at the Woodstock memorial plaque (we got to the head of the line because Al was a “Woodstock Alum”), checked out some arts and crafts, snacked and stayed hydrated (it was very hot out), and listened to pre-concert performances scattered around the grounds.

Two hours before the concert was to start, we picked up our rented lawn chairs (you can’t bring your own) and waited with the crowd for the gates to open. Al found us a great spot, with an excellent view. Everyone was in a festive mood. Lots of tie-dyed outfits, flower garlands, bouncing beachballs, the scent of weed wafting in the air.

Fortunately, given uncertain weather forecasts, I’d also brought along four blue rain ponchos, which came in quite handy for several intermittent rain showers as we waited for the show to begin. I kept checking the radar on my cellphone, hoping the band of severe thunderstorms would continue to travel north of us. Which, thankfully, it did (although there were a few disconcerting bursts of thunder and lightening nearby).

The music did not disappoint. The Doobie Brothers opened for an hour-long set and got everyone on their feet, singing and dancing along to “Rockin’ Down the Highway” and other hits. Although they didn’t perform at the original Woodstock, they were certainly of the era, and can still rock with the best.

Dark skies overtook the event during intermission, but the rain wasn’t too intense and didn’t last long. Then Carlos Santana and his amazing band took the stage, and no one cared a whit about the weather. I have loved his music for years. A CD of Santana’s greatest hits, a mix of rock, blues, jazz, and Latin rhythms, was my antidote to stressful days when I was working in Boston years ago, and would ease my soul and rush-hour commute home on many an occasion.

The man is 72 years old, one of the finest rock guitarists in the world, and living proof that age does not define us. His wife, Cindy Blackman Santana, was featured on percussion, and is equally extraordinary. The band played for more than two hours straight, and we danced—ponchos on, ponchos off—through most of the show. It ended with everyone singing and swaying arm-in-arm to Santana’s version of a ’60s anthem, “Get Together” by the Youngbloods—still as relevant all these years later. The moon emerged from behind clouds. Fireworks closed out the night. We had a spectacular time together. Al said it far exceeded his expectations.

And what, you may ask, does this have to do with living with scleroderma? It’s about living, folks. As is my way, I stressed too much about stuff that never happened, which drove me to plan appropriately for stuff that did happen (rain, getting a good parking space, avoiding after-show traffic). I didn’t get enough sleep. But the show was fantastic, I slept very soundly Sunday night, and I’m so glad I let Al talk me into going. And yes, I thanked him.

Here’s to what’s left of summer, for those of you in the Northern Hemisphere—or the end of winter, for those down under. I’m taking my annual summer break for a few weeks, and will be back in mid-September. I hope you can make your own great memories. Carpe diem.

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.

Wanderlust

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So . . . we ended up with two feet of snow from Skylar last week, and now we’re expecting another five to ten inches from the next Nor’easter, Toby, on Wednesday night into Thursday morning. (Who comes up with these names, anyway?) Fortunately, we’ve had some melting in-between.

But I’m really getting tired of this weather pattern. And I’m starting to yearn for our next travel adventure to somewhere beautiful and warm in the summer. Which brings me to the topic of traveling with scleroderma, or any other disabling disease, for that matter.

Travel is strenuous when you’re healthy. All the more so, when you have to deal with all the possible complexities of this disease. But I’m determined to keep visiting new parts of the world (new to me) and discovering other cultures and viewpoints, as long as I’m able, one way or another. The benefits of always learning and growing far outweigh the fatigue factor. So I’ve gathered a few travel resources that address some of the biggest issues for those of us living with some form of disability, below.

Many of the resources out there focus on wheelchair accessibility. Some also address the broader issues of traveling with a disability that is less visible—and therefore more readily dismissed by people who should know better. I’ve selected a range, here, to help you get started on your own travel adventure:

Lonely Planet Accessible Travel Online Resource: This free PDF includes a wealth of information, from a huge list of online resources to tips for traveling with access issues. Lonely Planet guides are a favorite of mine, and the fact that they make this one a free download is a big plus.

Rick Steves’ Tips for Travelers with Disabilities: You may know Rick Steves from his PBS travel program. This blog post list basic, common-sense tips for planning ahead, especially if you need a wheelchair accessible hotel room or wonder how to find accessible bathrooms in a foreign country.

Society for Accessible Travel & Hospitality (SATH): Founded in 1976, SATH offers travel resources, information for travel agents, plus travel tips and access information for people living with a wide range of disabilities.

Travelling with Scleroderma: This PDF download from Scleroderma Australia provides a great summary of how to travel with oxygen if your lungs are compromised.

Disabled Traveler/ SmarterTravel: Another useful blogpost with a roundup of online resources.

“What We Get Right About Accessible Travel” from CNTraveler: From my favorite travel podcast, here’s an episode featuring Alysia Kezerian, founder of the Instagram account Wheelies Around the World, and Traveler contributor Julia Buckley, author of Heal Me: In Search of a Cure. Both women travel extensively; both have disabilities. Kezerian has relied on a wheelchair since a spinal cord injury in her twenties, and Buckley lives with a rare disease that causes joint dislocation. Well worth a listen, for practical advice and a lot of inspiration.

Happy trails!

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.