Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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 mask—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 seeds— 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

February Thaw

· · Leave a Comment

I was finally able to take a walk Monday afternoon around my neighborhood. The sun was bright, the sky a robin’s-egg blue, temps in the mid ’50s, and my thumb had healed enough so that I could swing both arms without the pain of gravity’s pull on a swollen finger.

All good.

The snow from a recent storm and subsequent snow showers had mostly melted, sending water trickling through storm drains. A mourning dove cooed plaintively from a nearby rooftop. As I walked, the too-tight muscles in my back began to relax. Annoying chatter in my mind quieted, and I focused on what I saw, heard, smelled . . .

Hints of green amidst bleached grass.

A watchful dog’s bark.

A power drill’s whine.

A passerby’s hello.

Tiny buds on tree branch tips.

Hockey sticks slap slap slapping.

Overhead a private plane’s purr.

Wood smoke’s tang.

Sparrows’ chatter.

Sneakers’ scrunch.

Spring can’t come too soon.

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.

Incantation

· · Leave a Comment

A couple of weekends ago, before the Nor’easter that dumped 15 inches of snow on our fair city this past Saturday, I cleaned up my office. It was approaching the point of no return, with too much stuff on my desk in piles, and not enough room in my second bookcase to store everything (the first one being full).

Rearranging some stuff made more room in the bookcase, which enabled me to clear more of my desk, so I now have a nice, uncluttered (relatively speaking) place to work. I’ve also been rediscovering a few gems I had forgotten or just couldn’t see because they were under or behind other stuff.

Among those items is a little wand. It’s made of hard, clear plastic and is filled with some kind of liquid and multicolored sequins shaped like stars and crescent moons. When you tip it one way, then another, the sequins spin and tumble back and forth. It’s quite relaxing, mesmerizing, to play with. Almost magical.

It would be nice to own a real magic wand, one that I could wave and make all the Sturm und Drang of the pandemic, climate change, politics, scleroderma, and everything else stressful and scary to just go away.

It would be nice.

But the only real magic comes from effort and persistence and a determination not to let the harshness of this world in the 21st century squeeze out the beauty and joy and goodness that is everywhere, as well.

Hiding in another spot on my desk was a sticky note with this quote that’s attributed to Johann Wolfgang von Goethe:

“Whatever you think you can do or believe you can do, begin it. Action has magic, grace, and power in it.”

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.