Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Turtle Lesson

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One of the ways I deal with all of the bleak news these days is to find inspiration in nature. I love watching the birds at our backyard feeder, and the squirrels never cease to fascinate (even as they annoy). Anyone who knows me well also knows how much I love turtles, for their persistence and pace, so counter to our frenetic, busy-for-the-sake-of-busyness lives.

So, when a video popped up in my Twitter feed about turtles joining together to calm and rescue a struggling turtle, it made my day. Here’s the Tweet. If you click on the blue play icon, you should be able to watch it. Or click on the Watch on Twitter button:

If turtles can intuitively band together to help another, flailing turtle to right itself, how much more can we humans accomplish together to care for each other? Think about it.

Image: Timothy Perry

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.

Battle of Wills

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It’s been a couple of those days. Sunday afternoon, I managed to trip on our back doorstep on my way inside and whack my knee when I hit the floor. Fortunately, nothing appears broken, I have no trouble walking and my hands are fine, though I have a sore left shoulder from how I landed. I’m sure it will all heal soon. And I have a very annoying red squirrel to thank for some Monday calisthenics that proved my resilience.

As anyone with a backyard bird feeder knows, squirrels are very clever and find myriad ways to rob bird seed. We have a supposedly squirrel-proof feeder hanging from our maple, the kind with a cage around it, and a clear plastic hood to help keep critters away. Gray squirrels perform incredible acrobatics as they try to get at the seed, but are always foiled.

Not so with red squirrels. Smaller than their gray cousins, they are very aggressive and persistent. I hadn’t seen any all winter and this spring, until Monday afternoon, when I noticed one on the ground, nibbling at seed husks that had fallen from the feeder.

And so our battle of wills began.

Sure enough, within a few minutes, the squirrel had figured out how to climb the pole. It tapped the hood, trying to find a purchase, but the hood wobbled and it scrambled away. Soon, though, it was back, and this time, with a flying leap, landed on the cage itself. A few seconds later, it had wriggled inside and begun to chow down.

Smart little guy, I had to admit. I opened the glass slider to our deck and clapped my hands, and it scurried away. What followed, over the course of at least an hour, were multiple attempts by the squirrel to get inside the feeder, answered by multiple efforts by yours truly to make noise and scare it off.

Despite my hopes of conditioning the squirrel to leave whenever it got into the feeder, the squirrel had other ideas. It was, I realized, training me, instead. It quickly realized that there wasn’t any real danger associated with the noise. So the length of time between its forays to the feeder got shorter and shorter. Finally, I gave up. It’s still gorging itself on birdseed as I write.

All this made me realize I need a new and more effective strategy. So I’ve ordered a different kind of bird feeder that is (a) all recycled plexiglass and shaped so that any unwelcome critter will just slide off, (b) is easy to clean, which our current feeder is not, and (c) will be accessible to larger birds, like cardinals, which can’t fit through the current feeder’s cage.

The very hungry red squirrel will undoubtedly continue to come back to the feeder until all the seed is gone, and then we won’t refill it, but wait, instead, to set up the new feeder. I just hope it won’t try to make a nest nearby, because I do not want it settling around our home and scaring off all the other birds and gray squirrels that I love to watch every day.

Bullies are everywhere.

However, I have this bully to thank for some exercise mid-afternoon that got me out of my chair at my computer, helped my joints to be less stiff, and proved to me that my knee is, indeed, fine. I guess we both benefited, in the end.

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.

Eleventh Plague

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Last week was a roller coaster ride. It’s always a hectic time, preparing for Passover, what with all the cleaning and switching over our kitchen to our special Passover dishes and cooking, cooking, cooking. But this year, for the first time in three, we had planned to host the first seder on Friday night in person. Like so many families readying for the big holiday weekend, be it Passover, Easter, or the evening meals of Ramadan that coincide this year, we were really looking forward to, at last, celebrating together across a real table, rather than on Zoom.

Al had worked late in the kitchen on Tuesday, getting things ready so I could begin cooking the next morning. But when I came downstairs on Wednesday, he seemed weary and not himself. “Are you okay?” I asked. “I’m just tired,” he said. About an hour later, he was retching in the bathroom. My heart sank. I had recently learned that the Omicron BA.2 variant of Covid often presents with GI symptoms.

I sent him to bed, donned mask and gloves, and gave him a rapid test, which turned up negative. But I also knew that the rapid tests aren’t necessarily accurate in the first few days of symptoms with this variant. So I called our clinic and was able to get us in for PCR tests early that afternoon. They said we’d have results by the next day. I emailed our family that we were in a holding pattern for Friday night.

Al spiked a fever that afternoon and evening, but fortunately, he was fever-free by Thursday morning, not yet hungry, but able to eat a bland diet. I spent the rest of the day food shopping, cleaning, and cooking more food that evening. His condition continued to improve, but no PCR results. I emailed family that things were looking better, and we would confirm plans in the morning. I went to bed dog-tired.

Friday morning, still no PCR results, but Al was back to normal. We decided to green-light the seder, understanding that anyone who felt uneasy about coming should do what was best for them. All had to take rapid tests and have a negative result to attend. Our cousin’s husband, a physician, decided to stay home because he had been fighting a cold, which he told me with “97% certainty” was not Covid, but he went ahead and got a PCR test anyway, at his wife’s insistence. Finally, late morning, our PCR tests came back negative, a huge relief. Our daughters arrived late afternoon, and our other relatives that evening. I finished all my cooking just before everyone came. We had a wonderful seder together, and all felt so good to finally be able to share the meal and all the rituals in person.

Saturday morning, our physician cousin, whose family was hosting the second night, sent us all an email. He had tested positive. Now what? To my surprise, I did not freak out. There was nothing to be done. And I wasn’t going to spend the weekend fretting about the possibility of developing Covid symptoms. We ended up with just the four of us for the second seder. Our eldest returned to Boston that evening, and our younger daughter left for Philly the next morning. None of us have developed any symptoms, nor have our cousins who were exposed at home, who came here. Given that, if you’re infected, you can shed the virus 24-48 hours before becoming symptomatic (and most people do have symptoms), but all appeared to have spent the weekend symptom-free, we are most likely in the clear of a second-hand Covid infection.

A good thing, because Monday was my 68th birthday, and I really didn’t want the gift of Covid! I spent the day writing, which was wonderful.

So goes life in Covid times, which are not really over. Not yet. I hope you and yours enjoyed a lovely weekend, whatever holidays you may or may not celebrate. Stay safe out 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.

Oasis of Calm

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Last week, I spent four days on Cape Cod by myself, just to focus on my own writing. It’s the second time in about a year that I’ve given myself this kind of mental and physical space to write. It was a wonderful, productive time, in a beautiful setting, surrounded by nature. I wrote and planned and walked nearby beaches of the Cape Cod National Seashore. Nothing like getting away from all the distractions and cacophony of bad news to reset my mind and soul, think about what really mattersā€”and make my own art. Here’s a taste . . .

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.

Re-Boost

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Thursday afternoon, as I awaited my podiatry appointment*, a young woman at the other end of the waiting room began to sneeze and sniffle. She wore a maskā€”below her nose. When the nurse came to check her temp before her appointment, she asked the young woman how she was feeling. “Fine, thanks,” the young woman replied. Yeah, right, I thought.

Maybe it was just allergies. Or maybe she was in denial. In any case, at least she was not seeing my doc, and she was in an exam room away from the one I was given a few minutes later. I kept my own mask on tight and reassured myself that I was getting my second Covid booster in a few hours.

Omicron BA.2 is way too contagious, and I’ve read far too many accounts of people getting a “mild” case that feels like being run over by a truck, so I jumped on the opportunity when another booster round was approved by the FDA for people 50 and over last week. I was hoping the side effects wouldn’t be too bad.

That proved true Thursday evening. By Friday morning, I just had a sore arm and “Moderna rash” where I got the shot. By midday, I started feeling achy and tired, but I was still able to get some work done. Then I needed to lie down. After a good nap and Tylenol, I began to feel better. By Saturday, I was pretty much back to normal, although the rash will still take a few days to clear. This has been my pattern with each vaccination.

A small price to pay for a better immune response to this clever, cruel virus. I’d much rather have a day or two of side effects than potential lung damage from Covid on top of my already scarred lungs from scleroderma. Given that I can’t control the safety precautions of those around me, I’m grateful that I have this way of taking care of myself and my family.

* As to my troublesome corn, my podiatrist said there was no way, most likely, to keep it from coming back, but after removing it, he ground down a spot on the underside of my foam insole to relieve pressure. So far, so good. I ordered my own version of this tool, which is actually the same as a toenail grinder for pets, so I can adjust my other insoles at home. Just need to put a little chalk on the corn, step barefoot on the insole to mark the spot, and grind a depression on the opposite side.

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: Nick Fewings