Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Turtle Lesson

· · 2 Comments

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.

Oasis of Calm

· · 1 Comment

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

· · 2 Comments

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

Orchidstration

· · 2 Comments

Monday morning, while readying for the day, I was listening to a podcast interview by Krista Tippett with the celebrated children’s author Kate DiCamillo. In a wonderful, deep conversation, they explore the “mysterious fact that hope and heartbreak live so close, side by side, in real life,” and the power of story to make that bearable. Maintaining a sense of wonder in the world, well past childhood, is key. You can find the interview here.

In that spirit of wonder, I share my photos from last Friday’s visit with Al to Tower Hill Botanic Garden. Their spectacular orchid show gave me a lift, and I hope it will for you, too. Enjoy.

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.

Awaiting Sunrise

· · Leave a Comment

On a cold winter’s day, I’m thinking of sunflowers. Beautiful, hardy, bright sunflowers have been linked to scleroderma awareness, first in Australia, and now worldwide, symbolizing the sun’s warmth that brings so many of us comfort. At each sunflower’s center are thousands of tiny disc flowers that mature into seedsā€” symbolizing seeds of knowledge and the quest for a cure.

Sunflowers are also the national flower of Ukraine. Every summer, golden fields of sunflowers blossom across the country, which is the world’s largest producer and exporter of sunflower seeds and sunflower oil. The distinctive bloom is woven into wreathes for celebrations, painted on walls and furniture and folk art.

Before they fully mature and open, sunflower heads follow the path of the sun across the sky and come to rest overnight facing east, awaiting the next sunrise. Various religions have associated the sunflower with spiritual knowledge and a quest for truth and enlightenment. It is an inherently optimistic flower.

So I hold onto that as I have struggled to concentrate this past week, watching the brutal Russian invasion of a sovereign nation unfold. Great bravery and courage inspire. I pray that innocents will be spared, and that Ukraine, with the support of the world, will ultimately prevail.

And to plant more seeds for scleroderma awareness and research, I offer this: The biennial Systemic Sclerosis World Congress, a virtual gathering due to the pandemic, opens next week, on March 10, bringing together experts from around the world to share their work. There is a free Patient Congress, as well, from March 11-12, with presentations by international specialists on many aspects of living with this complex disease. Registration closes on March 7. You can find more here.

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: David Travis