Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

The New World Order

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It’s Monday afternoon, and I’m watching huge, fluffy snowflakes fluttering to earth outside my window. They land gently, without a sound, the perfect antidote to the frightening headlines on my news apps and comments in my Twitter feed.

I should stop reading it all, I know. But I feel compelled to keep up with the latest COVID-19 developments. It’s like we’re all trapped in this horror movie, but we can’t close our eyes. We need to know how it ends. And we can’t leave the theatre.

I find solace in meditation, my writing, helping my clients to communicate their efforts in response to the pandemic, connecting with family and friends, studying for my German classes (now online), watching videos of people in Italy making music from their balconies.

And I’m finding workarounds to being mostly home bound. Last Friday, instead of driving into Boston for a long-awaited first appointment with my new rheumatologist at Boston Medical Center, I made an arrangement with him via MyChart messages to speak by phone. The Rheumatology Department is in process of switching over to telemedicine, but not there quite yet.

He was very generous with his time. We spoke for 40 minutes about a wide range of my concerns, not only my health status, but also about social distancing and risks of the virus for other family members. As for me, he said my age is a greater risk factor than my scleroderma. This varies, of course, for each individual, but in my case, my lung involvement has remained a lesser issue, thank goodness.

Earlier last week, my hand surgeon’s office checked in about my upcoming procedure to remove a bothersome calcium deposit from my right thumb. We agreed to postpone until June, earliest. I’ve been living with this annoyance for at least a year. No point in doing it now, even in an outpatient surgical center, as planned.

Sleep does not always come easily. It seems that I get a good night’s rest every other night. It’s hard to turn off the worries about what the future holds. But at least I’m not driving anywhere long distance right now, which is riskier when I’m fatigued.

Instead, I’m trying to walk outside as often as I can. Over the weekend, I took a long walk to our city’s oldest park, to clear my mind and get some exercise. It was crisp and sunny. On any normal weekend afternoon, with such good weather, the park’s playground would have been crowded with kids and parents. Instead, only one couple with a small child played briefly on a swinging saucer. Traffic was light. A handful of people walked or jogged around the park’s narrow pond, some alone, some in pairs. We passed each other with a smiled greeting and six feet of separation.

As I rested on a bench, a squirrel bounded across the grass. In all the years I’ve been observing squirrels, I don’t think I ever noticed that they jump instead of walk from place to place. Instead of being wrapped up in my head, I had slowed down my mind enough to simply pay attention. A good thing.

A guided meditation I was listening to this morning noted how important it is to see and acknowledge all the little things in life that are going right, right in front of us. It is so easy to get sucked into the terrifying vortex of COVID-19, the news of exponentially mounting cases, the sudden deaths of loved ones, the exasperating muddle of federal leadership. While it’s essential to be alert and informed by reliable sources, too much information doesn’t help me cope.

So right now, I’m just going to watch the snow fall.

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. Please view Privacy Policy here.

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

Chain of Command

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For about a year, now, I’ve had a pit of calcium sticking out of the pad of my right thumb. It looks like a very small, gray pebble, but it will not budge. If I press on it or accidentally bang it, it smarts. It’s also an open wound that I have to tend very carefully to avoid infection.

Usually, when a bit of calcinosis finds its way to the surface of one of my fingers, I can either pull it out or it will pop out on its own. Not this one. Recently, when I tried twisting it with a pair of tweezers, the top broke off, but there remained a needle-like protrusion that is just as stubborn.

So, I finally gave up and saw my hand surgeon last Friday. One look under the fluoroscope, and we had the answer. That pit is the tip of a chain of calcinosis that stretches all the way down my thumb. I’ve known for years that I have a veritable Milky Way of calcium pits floating in both thumbs and other fingers, but never seen anything quite like this.

We discussed options and agreed that he would debride it in an outpatient surgical center. It would be foolhardy to try to clean out all the calcinosis, because (a) it will probably grow back and (b) the risks to my thumb’s ability to function are far too high, especially in my dominant hand. So he’ll just remove a bit at the top of the chain, so I can use my thumb with less pain. We also agreed he’d put me out rather than use local anaesthesia. Too much digging around in my thumb would make me too anxious.

He ribbed me that I always bring him difficult challenges, and I teased him back that I didn’t want him to get bored. This is the same surgeon who saved my hands two-and-a-half years ago from horrific ulcers that lifted up to reveal bone and two broken knuckles, so I trust him completely. Back then we built a great rapport and mutual respect. He told me I should teach a course on wound care.

Now I await word about a date for the procedure, as well as confirmation that the surgical center he recommended is in-network for my Medex BC/BS plan. There’s a back-up, if that doesn’t work out. Always essential to check, first.

So, once again, my hands are in good hands. I wish I didn’t need to see my surgeon, but I’m very grateful that he’s there.

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: Sonny Ravesteijn

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