Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

A Sliver of Moon

· · 2 Comments

Saturday night, we were sitting with friends by a fire pit, near a pond, watching the flames, watching a sliver of moon sink beyond the trees. The same moon sinking beyond the horizon, two hours later, in El Paso. The same moon that would be absent from the sky, early Sunday morning, in Dayton.

In the U.S., in 2019, so far, there have been 255 verified mass shootings. Nearly 8,800 people have died from guns. That total just increased by 31 souls.

There’s a lot I can do to increase my odds of living a long life with scleroderma. I’ve managed it for nearly four decades, now. Some of my resilience is genetic. I’m fortunate to have access to quality health care. But I’m also vigilant and diligent about making healthy choices.

None of us can control whether an active shooter with a semiautomatic weapon of war decides to show up at a Walmart, or a bar—or a school, a church, a mosque, a synagogue, a movie theatre, a festival—and spray the crowd with deadly fire. But we can make our voices heard. And we can vote to end this madness.

The Earth turns, unceasing, on its axis. Nothing in life ever remains the same. We cannot control the world around us, only our response.

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: Terry Richmond

Implanted

· · Leave a Comment

Three-and-a-half months have passed since my latest resorbed molar was extracted, and Monday was the big day for the next step: drilling a hole in my healed jaw and screwing in the implant. When I had my checkup with my periodontist two weeks ago and he proclaimed me ready, his receptionist joked, “Want to come back this afternoon?” Most certainly, not.

I did my best not to dwell on the pending procedure. On Sunday, we got to the beach once again, this time on Boston’s North Shore, for a beautiful afternoon of perfect sunshine, light sea breeze, and warm enough water for me to wade up to my waist several times. Just the right distraction.

I busied myself with writing Monday morning, but as the hour grew near to go, I briefly imagined just staying home and not being my normal Do Bee self. The Do Bee won out. On the 45-minute drive to my periodontist, at least the WGBH radio hosts were talking about something amusing: what listeners watch on TV to ease the stress of the daily news cycle. (Marie Kondo was a favorite.)

Then came waiting for the procedure to start. When I’m anticipating dental work, I really have to force myself to stay in the moment and not get overwhelmed. Sitting in the reclining dental chair, covered by paper drapes, I studied the art on the wall (an interesting abstract painting, not your typical bland office art), the plastic wrapping around the overhead exam light’s handles (why does it need extra covering when they’re wearing gloves, anyway?), and contemplated how much plastic waste that medical providers generate in the interest of sterility. (Literally, tons. According the Journal of the American Medical Association, health care facilities are the second largest generators of waste in the U.S., producing 4 billion tons annually. That’s a lot of disposables, including a lot of plastic.)

Fortunately, my periodontist and I enjoy similar music during these procedures, which are strenuous for both of us. As he injected local anesthetic into my gums, I focused on Vivaldi. This was especially helpful as he prepared my jaw for the implant, which involved a lot of scraping and pressure and pulling my tight mouth into very uncomfortable distortions. The selection was Vivaldi’s Violin Concerto in A Minor, which I played years ago in high school, and I could still remember some of the bowing.

Then came the drilling. This drowned out all the music, causing my entire skull to vibrate. The hardest part was getting the drill and suction and other tools into my mouth. But he managed, thank goodness, and the worst was over in about twenty (long) minutes. Screwing in the implant took some manipulation, but at least I could rest my mouth in-between the different steps. As he’d predicted, we were finished in under an hour. Definitely easier than the extraction, which took twice as long. He was pleased with the result, and I finally relaxed.

After a 45-minute drive, plus waiting at the pharmacy for antibiotics (always a necessary precaution for me), it was a relief to get home. Another three months of healing and trying not to chew on the right side of my jaw, and then it will be time for my dentist to put in the crown. Much as I dread this procedure, I’m glad I took care of it sooner than later. Being a Do Bee—on my own behalf— paid off. (And for those of you who remember Romper Room, here’s the official Do Bee song.)

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: Jenna Lee

Great Escape

· · 9 Comments

As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of all.

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.

A Flamboyance of Flamingos

· · 6 Comments

This one is just silly. Because we all need some silliness these days.

I’ve been watching the birds at our feeder, a favorite meditation. The feeder looks like a globe cage (to keep out the squirrels) hanging from a pole attached to a maple in our backyard. We hadn’t filled the feeder in some time, because chipmunks had figured out how to climb the pole, slip into the feeder, and steal all the food. So far, they haven’t rediscovered it, although at least one squirrel has now learned how to climb the pole, jump onto the feeder, and swing it wildly so food dumps on the ground. Clever critters.

But back to the birds. Sparrows have taken over the feeder. They travel in gangs, which reminded me of all the wonderful words for groups of animals. There are the familiar terms—a pride of lions, a school of fish—but bird flock terminology is the best.

Take, for example, a quarrel of sparrows. So appropriate, considering how much they chatter and cheap.

Here are some other favorites:

  • a parliament of owls
  • a peep of chickens
  • a charm of hummingbirds
  • an asylum of loons
  • a palette of painted buntings
  • a Vatican of cardinals
  • and, best of all, a flamboyance of flamingos

Which got me to thinking . . . what if we had similar descriptors for professions, such as:

  • a vault of bankers
  • a drill of dentists
  • a hose of firefighters
  • a pontification of politicians
  • a diagnosis of doctors

Which then led me to specialists . . .

  • a pulse of cardiologists
  • a rash of dermatologists
  • a pod of orthopedists
  • an inflammation of rheumatologists
  • a stream of nephrologists

Which brings me to all of us who deal with specialists all the time. How about this?

  • a persistence of patients

Happy July.

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: v2osk

Swelter Skelter

· · Leave a Comment

It takes a lot for me to sweat. I rarely get that overheated, since my body revels in warm weather, even hot. But humidity is another matter altogether.

July 4th weekend here in Central Massachusetts, the air was thick. The sweat was literally pouring down my face. That sensation is so rare for me, I was surprised. I had an annoying cough, too, so I wondered if that had something to do with it. Was it the air quality or a cold that was irritating my lungs? Why was I sweating so much?

The TV meteorologist had a simple answer: The humidity was so bad, it was “disgusting.” Agreed.

Disgusting enough for me to turn on our heat pumps, which double as dehumidifiers and A/C when it gets really bad. I hate A/C, because it inevitably makes my extremities numb, and avoid it at all costs, but I was perspiring so much that I finally caved. After a few hours, the house was bearable. By Saturday evening, thunderstorms had rolled through and taken care of the rest. Sunday, the weather was a blessing, and we opened the windows again.

On Monday, as I write, I’m back to my usual summer gear, a sweater over light clothes. I can sit at my computer and regulate the temperature in my home office to my precise needs. Outside, it’s in the high ’70s, sunny and dry. No need for anything but window screens and fresh air.

Now there’s mounting evidence that some of my aversion to air conditioning has nothing to do with scleroderma and Raynaud’s, and everything to do with gender.

According to a recent study, researchers at the University of Southern California and the WZB Berlin Social Science Center found that women perform better on verbal and math skills tests as the temperature rises. Women college students in Berlin improved test scores by 1.76 percent for every Celsius degree increase. And when indoor temperatures were raised from the 60s to 70s (Fahrenheit), their math test scores increased by 15 percent.

Any woman who has struggled to function in a frigid office space during the summer, wrapped in heavy sweaters or even winter coats, with a space heater under her desk, because the A/C is cranked to near refrigerator temperatures, recognizes the truth in this finding. (If this sounds all too familiar, feel free to cite this study to the Powers That Be. Here’s the full report.) I used to suffer in an office like that, and one of the great joys of working for myself is that I no longer have to put up with such energy-sucking practices.

So, I’m grateful to have an option when the humidity and heat overwhelm even me. But I’m also glad that I’m the one who gets to regulate the thermostat.

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: Vitor Pinto