Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Ooh la la!

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At long last, after three years of Covid delays and a bout with Omicron in July, we finally traveled abroad on vacation. This time, we went to Canada, spending a meaningful weekend with family in Toronto and a lovely week in Québec City, which feels like going to Europe without flying across the ocean. I’ve been intrigued by the capital of Québec for years, and it was well worth the wait.

We stayed in the charming Old City and walked and walked up and down the hilly streets, using the funicular only a couple of times at the end of our visit because my feet were giving out. Over a week’s course, we learned a lot about the city’s military history and First Nations. Québec City was built on a high cliff as a fortress and played a major role in the Seven Years War between France and Britain for control of Canada. In a decisive battle in 1759 on the Plains of Abraham, the British won, a turning point that soon led to British control of the territory. This, after the French laid claim to lands that had belonged to First Nation peoples for thousands of years prior. Stories unique to place and time, but all too familiar.

The Old City’s architecture features stone buildings with dormers and metal roofs that are curved at the bottom so snow falls away from the foundation. Churches abound, though we learned that here, as elsewhere, the number of church goers in this predominantly Catholic province are declining. So some churches are being repurposed, including a tasteful renovation of a church into a public library.

We saw wonderful and moving art as well, including a powerful outdoor installation near the port by Ai Weiwei of hundreds of life jackets worn by Syrian refugees, which he collected from the Greek island of Lesbos. Talented street performers juggled and balanced on unicycles in the plaza next to the posh Chateau Frontenac, a landmark hotel. Beyond the Old City’s gates, we toured the Parliament building, which is modeled after the Louvre in Paris and home of Québec’s National Assembly, and the Musée national des beaux-arts du Québec, where we saw an exquisite special exhibit of carvings by Inuit artist Manasie Akpaliapik.

And we traveled up the St. Lawrence by bus to explore the Chute Montmorency, a thundering waterfall that is slightly higher than Niagara Falls, and from there by train to Baie-Saint-Paul, a pastoral town that is home to many artists. Other highlights included a guided tour of the Musée Huron-Wendat and a relaxing cruise on the St. Lawrence. A good thing we walked so much, even as I was exhausted by day’s end, because the food is excellent and the deserts magnifique.

Everywhere we went, we were surrounded by the lyrical sound of spoken French. While I was able to understand about 80 percent of what I read in museum texts, signs, and other materials, the spoken language is very fast and also a dialect, so we had to converse in English. Nonetheless, we were both grateful to our high school French teachers so long ago, that we were able to keep up as well as we did. And, yes, people really do say “ooh la la” instead of “oh wow!” Much sweeter to my ear.

So, here are some of my favorite images from the trip. Profitez-en bien!

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.

Rescue Mission

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As you may have guessed by now if you follow my blog, I’m a bit of an amateur naturalist. Learning about all kinds of plants and creatures gives me joy. Sitting on our deck when I’m writing longhand (best way to pour out the first draft of a story), I love to watch the birds at our feeder and other wildlife going about their day (which can also distract me from my writing, or help provide the pause that summons the next sentence). Our feeders hang outside the kitchen windows, my favorite view as I eat breakfast or lunch.

So, I can report, with delight, that we saw another hummingbird on Sunday, pale olive green with a lemon yellow breast. It hovered and sipped, zipped away, then returned for another drink. I wasn’t nearby for other visits, but the nectar level in the feeder was slightly lower by evening.

However, apparently the hummingbird’s activity attracted some other visitors—bees. As we were leaving the house Sunday evening, I noticed them investigating the feeder. By the time we returned, there were no more bees crawling around it. They had all managed to fall inside.

What to do? Bees are important pollinators, essential to world food supplies, and honeybees are in serious decline due to a variety of factors, especially use of pesticides and other agricultural chemicals. At first I thought they had all drowned, but when I tapped the feeder, they started swimming. Then they started humming. It was as if they were calling for help. (Yes, I’m a softy with a writer’s imagination. But still possible.)

My hands are not facile enough to simply pick up the feeder and dump the contents, especially at risk of getting stung. But with salad tongs and long plastic kitchen spoons, I managed to unhook it and spill it on the ground. When I checked back a while later, most of the bees were still curled up on the grass, but at least one was wobbling about. The next morning, they were all gone. So either some other critter came along and had a feast, or they slept off their sugar high, dried out, and flew away. I hope the latter is true.

A little online research turned up a few ideas to avoid a repeat: diluting the sugar water solution to a 5:1 ratio, still sweet enough for the hummers but not as appealing to the bees, is my next step.

And so, Dear Reader, I hope you find some inspiration and fascinating drama in your own back yard. I’m taking a break for the next couple of weeks and will be back at the end of August. For those in the northern hemisphere, savor the rest of summer, and if you are down under, I hope the end of winter treats you 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.

Image: Leandro Fregoni

Gotcha

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So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay safe.

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: Gratisography

Play Ball

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Today in the Northern Hemisphere, the sun appears at its highest point in the sky and daylight peaks. I always find it ironic that summer opens with a climax of daylight, which begins to ebb the very next day. But perhaps it is the best of balancing acts: as the days grow hotter through summer months, our exposure to the burning sun gradually eases.

Summer always feels full of promise. This weekend, we welcomed its nascent approach with that most summery of summertime activities, a baseball game. Our Fair City is home to the Red Sox minor league team, and we lucked out with a Father’s Day home game in our beautiful year-old stadium, on a comfortable afternoon of intermittent sunshine. Our eldest daughter joined us for a relaxing time with a great view above home plate. And we even won, 5-4!

Some people find baseball too slow. For me, especially in our hurry-up-do-it-now-before-you-miss-out society, the pace is perfect. There’s plenty of time to chat and just sit back, watch the game and all the playful side contests between innings (catch the ball and win a pie!), enjoy a ballpark snack, stretch and sing Take Me Out to the Ballgame at the seventh inning and Sweet Caroline (the Red Sox Nation anthem). I was having so much fun just hanging out with my family that I missed a few key plays, but no matter. The ninth inning packed in some real excitement, and we all had a great time.

For those few hours, I felt transported—away from all the stresses and worries of our present moment. It felt like a real mini summer vacation. I came home refreshed.

Recently I was listening to a discussion about language, how American English is full of violent metaphors to express resilience and success. A good performance is described as “killing it” or “blowing them away.” To be precise is to “nail” a presentation. We’re advised to “power through” pain or adversity, just “hang in there.” To ask someone their opinion, we say “shoot.” And that’s just a small sampling.

While baseball certainly has its own slugger language, the sport has also brought us some kinder, gentler expressions: “play ball” when it’s time to begin; “step up to the plate” to meet a challenge; bring your all when it’s “the bottom of the ninth.”

How would our world change if we framed our thoughts in baseball idioms? How would life be different if we took time to savor what’s right in front of us, enjoy the slow moments and pauses, sing and laugh more? It’s summer here in the Northern Hemisphere. No better time to find out than right now.

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.

What It Will Take

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Last Tuesday evening, a few hours after news broke of the horrific Uvalde massacre, I attended an active shooter training session at our synagogue. Conducted by members of our local police department, the training had been planned for months, ever since the synagogue hostage crisis in Colleyville, Texas, back in January.

We learned about ALICE, an acronym for five steps to remember if a shooter enters the building:

  1. Alert others as soon as you are aware of a threat.
  2. Lockdown if evacuation is not a safe option.
  3. Inform authorities and others with real time information about what’s happening.
  4. Counter the shooter any way possible, via distraction or direct attack.
  5. Evacuate as soon as possible, as safely and quickly as possible.

We learned that a person can bleed out in three minutes. We learned to look for where the bullet exits the body rather than where it enters, because more damage is done as it passes through. We learned how to apply a makeshift tourniquet and pack a wound while waiting for emergency services to arrive. We also toured our building and learned about panic buttons and safe rooms.

It was hard and surreal, and I had to force myself to stay. I was grateful that our synagogue already has invested a lot of time and thought and resources into safeguarding the building. I left with a heavy heart.

At some point, we will gather again to do an active shooter drill. For some of my fellow congregants, none of this is new, because they work in schools or private companies or medical facilities that have undergone similar training. Children endure these drills routinely at their schools. The children and teachers at Robb Elementary had a lot of training, and at least a few in the targeted classrooms were able to hide and evade the madman and live. But there are no guarantees that any of this will work if, God forbid, a shooter ever came to our synagogue.

This is life in America in 2022.

Once again, I find myself wondering what I can do to stop these destructive forces in our society. Over the weekend, I realized I was framing the question the wrong way. The issues are so huge, they are paralyzing. Yet, to give up, because it’s “impossible” or “out of my control” is not the answer; neither is freezing in place out of a sense of helplessness or powerlessness. To do so only yields control of outcomes and becomes a self-fulfilling prophesy.

Rather, I realized, I can focus on one small action, every day, to push back and help our nation shift course. When tackling any huge problem, I’ve found that taking small steps lead to bigger steps, and each step leads to greater clarity about the next. On Sunday I donated to the Texas Tribune, a non-profit group of journalists who have done outstanding truth-telling about the tragedy in Uvalde and its aftermath. On Monday, I wrote this blog post. I will join a gun safety protest rally, again. And so on. I no longer feel like I’m sitting on my hands. And if my efforts are coordinated with others, the pressure multiplies.

So I hope this gives you some ideas, Dear Reader. And I hope and pray that none of us ever needs to put active shooter training to the test.

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: Biel Morro