Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Adaptations

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Last week, I met with a wonderful occupational therapist about how to better manage tasks I do with my hands while my ulcers heal. She was a great listener, compassionate and insightful. And I learned a thing or two.

Adaptive tools have come a long way in the decades since I last had a consult of this type. I’m still skimming the catalog she gave me to figure out what will be most useful.  Already on order: a tool to help with personal hygiene, which is one of my biggest challenges right now.

In addition, I cut a piece of the foam tubing she gave me to slip on my computer stylus, and now I can use it in my right hand for typing along with two fingers on my left hand. The dictation software is good, but it does not allow for fluid writing for my more creative projects. So this is a stopgap.

And now for a really neat trick that she taught me — a new and improved way to tie my sneakers. There are plenty of gadgets, including elastic laces, that can make this easier. But this trick is just too cool, so I pass along to you:

Step 1: Tie lace left over right.

Step 2: Tie lace right over left. (If you sail or were a scout, you’ll recognize this as the beginning of a square knot. And, yes, you can also do it right-over-left and then left-over-right!)

Step 3: Insert the two ends of the laces through the center of the knot, leaving a loop on either side to form a loose bow.

Step 4: Pull each loop evenly at the same time to either side, and, voila, you have a neatly tied shoe! You may have to play with the size of the knot opening to make it work; a little practice makes perfect.

You can easily tie a double knot to secure it. Whoever was the genius who figured this out, my heartfelt thanks. May the adaptive force be with you!

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.

A Little Progress

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I took a walk around the block Monday afternoon, my first such excursion in three weeks. The weather is starting to clear, and so are my back pain and the sore ulcer on my left ankle. All the leaves have unfurled, and the streets are cloaked in green. Crabapple petals scatter like pink snow on neatly trimmed lawns. The red tulips in our rock garden have bloomed, and the blue hydrangea that Al gave me for my birthday is taking root.

It’s a relief to begin to feel like myself again. Over the past couple of weeks, I was able to rule out a compression fracture in my spine and see a physical therapist who did a thorough evaluation. She confirmed my sense that I had sprained my back. No nerve damage, thank goodness. Heat treatment, the right set of stretching exercises, and a better mix of acetaminophen and ibuprofen are helping me to heal.

As for the ulcers on my ankle and fingers, I received some very good advice from my excellent podiatrist, who also knows a great deal about wound care. Among other things, he gave me some Lidocaine gel that has made a huge difference in my ability to tolerate my ulcer dressings while I wait out the healing process. He also gave me a special mesh infused with silver that is helping my ankle. Silver has natural antibiotic properties, and the results so far are promising. I’m awaiting the outcome of a culture to see if I need additional oral antibiotics.

I plan to get a consult with a wound care specialist sometime in the not-too-distant future for advice about better ways to manage my ulcers. I’ve been using the same approach for decades, and there are new techniques and treatment options that I hope to discover so that my skin doesn’t break down as badly again. No guarantees, of course, but this has really been a siege that I don’t want to repeat, if at all possible.

Meanwhile, the gloomy rain and chilly weather that have encased New England for the past few weeks are about to end. We’re expecting temperatures in the 80s by midweek. It can’t come too soon!

So, here’s to the end of a downright nasty spring. Summer doesn’t officially start for another month or so, but I’m looking forward to Memorial Day. If you’re going through a rough patch yourself, I hope you find the good medical care and healing that you need, too.

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.

Feed the Dragon

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This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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.

Image Credit: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

Routine Maintenance

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On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.

But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.

My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.

I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)

The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.

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.

In-between

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On Tuesday, I turn 63. It’s one of those in-between birthdays, halfway from the momentous 60th to the liberating 65th (assuming Medicare doesn’t disappear in the meantime). The forsythias are in full bloom, at last, and the maples lining our street have flowered—prompting my annual early spring allergies or a cold, I’m not sure which.

Even still, I’m grateful for the trees’ chartreuse tinge, the daffodils in our neighbors’ yards, the violets, the tulips reaching skyward. My birthday falls on the last day of Passover this year, and I’m looking forward to some real cake when we go out for dinner in the evening to celebrate.

These are small pleasures. It’s essential to savor them when headlines blast bellicosity. Anticipating my birthday a year ago, I could have never imagined we would be wondering if North Korea really intends to fire nukes at Seattle, or whether the U.S. successfully sabotaged Pyongyang’s missile test this past weekend.

If history is any teacher, much as I would like to ignore the news, we need to pay attention. I have spent much of the Passover holiday reading the haunting memoir of Stefan Zweig, a Jewish Austrian playwright, novelist, poet and essayist who chronicled the destruction of Europe during the two World Wars in The World of Yesterday. (That 1942 memoir and some of Zweig’s stories inspired Wes Anderson’s 2014 film, The Grand Budapest Hotel.)

One of the most famous writers of the 1920s and 1930s, until his literary career was destroyed by the Nazis and he was forced into exile, Zweig struggled deeply with the role of the artist in response to the politics of his day, when dreams of a better world crumbled into ashes. His questioning parallels my own internal monologue as our nation wrestles with the meaning and value of our democracy. He provides no easy answers, even as he strives to remain true to his principles of the uniting humanism of artistic endeavor.

Among many striking passages, Zweig recalls a mixed sense of calm and foreboding on his 50th birthday. The year is 1931. Having survived the Great War and ensuing impoverishment of Austria, Zweig describes contentment with his rebuilt life. He has achieved literary fame and comforts in his home in Salzburg. He has been inundated with gifts from his friends, who include many of Europe’s leading writers, artists and musicians. But something eats at his consciousness:

Strange to say, the very fact that I could think of nothing to wish for at that moment made me feel mysteriously uneasy. Would it really be a good thing, some impulse in me asked—not really my conscious self—for life to go on like this, so calm, well-regulated, financially profitable and comfortable, without any more tensions or trials? Isn’t it, I asked myself, wrong for your real self to be living this secure, privileged life? . . . Wouldn’t it be better for me—so I went on daydreaming—if something else happened, something new, something that would make me feel more restless, younger, bringing new tension by challenging me to a new and perhaps more dangerous battle? (Translated by Anthea Bell, University of Nebraska Press, 2009)

The tragedy and irony of that premonition is not lost on Zweig, who, by decade’s end, was forced to reclaim “a harsher, harder life from its ruins and rebuild it from the ground up.” I read these words, and I wonder, too, what’s in store.

The world feels fundamentally different to me on my 63rd birthday. I am grateful for so much—family, friends, home, community, creature comforts. Yet the accelerating pace of disruption overwhelms. Some days it’s hard not to get caught up in dark predictions. I struggle to find the balance between staying informed and staying sane. As Zweig wryly notes toward the end of his memoir (alluding to radio and the speed of news transmission), “The greatest curse brought down on us by technology is that it prevents us from escaping the present even for a brief time.”

Nonetheless, as Zweig speculated on his birthday 86 years ago, there is an immediacy and strengthened sense of purpose in a time like this. I feel as if my words matter more, now, than a year ago. I’m still finding my voice. I completed the first draft of my novel, which I have been writing for two-and-a-half years, about a month ago. It’s set in World War I. The parallels resonate more strongly than ever. The year ahead will be devoted to revisions, and new words, and finding the courage to say them.

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.

Image Credit: Portrait of Stefan Zweig, Austrian Cultural Forum