Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Turtle Time

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For my birthday, a friend who knows me well gave me a copy of Sy Montgomery’s wonderful book Of Time and Turtles: Mending the World, Shell by Shattered Shell. I have a thing for turtles and their slow, measured pace through life.

Back when I ran a marketing department for a small college, I used to give my staff little turtle figurines as a reminder to take the time to do the job right, to avoid spending twice the time fixing it. They loved the concept and permission to go slower in a society obsessed with speed.

I can’t say I always follow my own advice, but I have a collection of turtles in my home office to remind me. From Montgomery, I’ve learned more about these prehistoric creatures, how they are gentle (even snappers are much less dangerous than their stereotypes), steadfast, and determined, somehow managing for millennia to beat incredible odds against their survival. Beyond natural predators, our modern world has compounded those risks with cars that speed across turtle nesting pathways, pollution and development that destroys habitats, and climate change that affects the gender of incubating turtle embryos, to name just a few.

Still, in their own plodding way, turtles persist.

Rescue organizations help, as much as they can, and their volunteers are incredibly dedicated. Montgomery takes you into this world of rescuers, in beautiful prose that inspires. In a chapter about her efforts to help release turtle hatchlings back into their native environment, near a busy highway that pregnant turtles must cross to lay their eggs, she writes:

Two kinds of time exist side by side: the frenzied, fleeting, harried time, rushing along like the cars on the interstate, and the eternal, cyclical, renewing time of the seasons. The turtles traverse them both. Following them to the world just outside the highway guardrails, we enter the embrace of the wild, beating heart of nature, escaping for a moment from the trap of transience.

As the pace of our lives urges us to move ever faster, faster, it feels so good to settle down with a wonderful book about turtles, downshift, and breathe. May you have a slow, peaceful, reflective day.

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 Day in the Life

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I’m heading into one of those periods when I have at least one and often two or more medical appointments each week for several weeks. Last week I met with our PCP to evaluate my sore back. Turns out it’s not a pulled muscle; it’s sciatica. Ugh. Treatment remains the same—lidocaine patches, OTC pain meds, heat or cold as needed, gentle stretching, no heavy lifting, rest, rest, rest. I’m slowly improving, able to sit and write at my computer again and drive longer distances, take walks. Sleeping soundly. All that is good, but I wish it would just go away.

My resilience was put to the test the next day, when I had to get up very early to drive in rush hour traffic to Boston for a 9:00 a.m. echocardiogram to assess my pulmonary hypertension, followed by a later morning appointment with my cardiologist. I did okay on the long drive, knowing from experience that I could lie down and doze during the echo, depending on how the tech handled the ultrasonic probe. Fortunately, he had an excellent, light touch, and I was able to rest for most of the half-hour procedure.

I found a cafe not far from the clinic and roused myself some more with an excellent breakfast. Then, after getting my sense of direction mixed up and walking a few blocks the wrong way (more tired than I thought), I realized my mistake and walked back to the clinic with 10 minutes to spare for my next appointment.

I was led to an exam room right on time for an ECG. But my cardiologist was backed up, so I was sent back to the waiting room for a while. Maybe a half-hour later, I was ushered into an exam room again, only to sit and wait for another half hour or so. This is when my iPhone is a necessary companion. I kill a lot of time in waiting rooms doing The New York Times crossword and other puzzles.

At last my wonderful cardiologist arrived, apologizing for the delay. Turns out there was a crunch of patients who showed up all at the same time. In any case, we reviewed my echo preliminary results, which were stable. Always reassuring. Pulmonary pressures were good. He noted, as he has previously, that I have some fluid around my heart, a bit more than is normal, which he attributed to some stiffening of the heart muscle due to scleroderma, which apparently impedes normal fluid absorption. Nothing to worry about, but important to track. He ordered some blood work to rule out any inflamation. We compared notes on sciatica. He’s lived with numbness in his left leg for years.

Then it was down to the lab for a blood draw. I had some other tests for my new GI specialist from a previous appointment that I could not complete at the time, so I took care of all that. The phlebotomist’s name was also Evelyn, so we bonded and chatted about our different nicknames (she goes by Eva and I, by Evie). I informed her that I have small, rolling veins, which can be an issue for getting stuck easily, and she used a butterfly needle, a good thing, because there were six vials to draw.

That accomplished, I drove home, which only took an hour, given no traffic midday, then stopped at the pharmacy to pick up a refill. By the time I got home, seven hours had elapsed since I’d left. I plugged in my heating pad and took a much needed nap, which enabled me to get some work done at my computer later that afternoon.

I’m always grateful for all of the excellent medical care. I’m also grateful when I can have some days off from all those appointments. Sleep is essential. Pacing is everything.

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: Jackman Chiu

Aging Grace

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I turned 72 on Saturday. It was a birthday when I felt my age more than I would have liked. A couple of weeks ago, I aggravated an old lower back injury, trying to do more than I should have. Thought it was resolving, just a bit sore. Then on Wednesday afternoon, after I got back from driving once again into Boston environs to take care of my loose crown (yes, it’s finally tight and stable!), after I sat at my computer for several hours, when I tried to get up, I could hardly stand.

What the . . .  ?

It was really quite astonishing. I couldn’t get up easily or sit without pain, couldn’t walk without pain, couldn’t bend over. Called our PCP’s office and spoke with one of the nurses, asked what to do and if I needed a PT referral. She promised to get back to me, but for whatever reason, I did not hear anything, so I called the coverage after hours. That nurse, who, from background noise, appeared to be working from home and a bit distracted, nonetheless read me the notes I hadn’t received: warm compress, lidocaine patches, heating pad, rest, gentle stretching, OTC pain relief. I knew all that already, for the most part, having been through this a few years ago. But followed her suggestions.

Spent the next few days mostly on my back with a heating pad. I was able to visit with friends on the afternoon of my birthday, a very welcome break, and then go out to dinner with Al that evening, but scrapped our plan to see a play matinee on Sunday because my back felt worse again. We’ll make up for it another time.

By Sunday evening, I realized that part of the problem could be the memory foam topper on the bed, which I hadn’t flipped in months—necessary to keep it from getting too squishy, because soft bedding is not good for my back. So Al helped me remake the bed, and Monday morning I was feeling a bit better again. As I write this at my desk, I have the heating pad on my back.

Our geriatrics team called me late last week to follow up and set an appointment with our NP to make a home visit on Wednesday. So that will be my opportunity to review progress and figure out the PT question. I’m glad she can come here, one less drive and office waiting room to sit through. I’m feeling more confident that this, too, shall pass, as my mom used to say (an aphorism that used to drive me crazy, but bears remembering).

Above all, I realized that this birthday’s lesson was all about patience and being realistic about my limits. The older I get, the more relevant it becomes to remember that I need to set some boundaries for myself, even as I do my best to stay healthy and strong. My body is aging, all the more so with scleroderma, and that is just how it is.

At moments like these, I hear T.S. Eliot in my head, from The Love Song of J. Alfred Prufrock:

I grow old . . . I grow old . . .
I shall wear the bottoms of my trousers rolled. 

Here’s to another year. May we all age as gracefully as we can.

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: Julien Tromeur

And Now for Something Completely Different

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When I am not writing about living with scleroderma or helping my clients with marketing and communications strategy, I pursue my own writing. Fiction, that is—historical fiction, in particular.

Back in 2014, I began working on a novel set in World War I about a mother whose estranged daughter runs off with her beau to drive ambulances for the French war effort, and the mother’s journey to bring her back home. It took seven years to research and write, and it’s taken another four-and-a-half years of searching for a literary agent and/or publisher. But persistence finally paid off, and I’m thrilled to share that my debut novel, Line of Flight, will be published by Köehler Books this December.

I write about the process of creating historical fiction on my Substack, History Making, and you can read a bit more about how this all came about here.

You’ll also find a bunch of essays there about how I researched the novel, as well as the novel I’m working on now regarding art and censorship in Weimar Germany.

As I’ve written here before, we are all much, much more than our diagnoses. In my heart of hearts, I’m an artist. Words are my medium. I’ll be sure to post here when the book is ready for pre-order, for anyone who’d like to read about something other than living with scleroderma. Thanks.

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: Getty Images for Unsplash

700-plus

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I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.

That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.

Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.

Because I can’t let it.

And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a gift.

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: Beth Macdonald