Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Savory Summer

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Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

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 Credit: Aron

See at Last

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There is nothing like a new pair of glasses with an accurate correction. For months, now, I have been tolerating slightly blurred vision, the aftermath of 60 dives in a Hyperbaric Oxygen chamber last fall to heal my hands from major surgery. This is a common side effect of the treatment, and, as predicted, after about three months, my sight returned to almost normal.

But the almost part was pretty frustrating—just blurred enough so I had trouble reading street signs, especially later in the day when my eyes are drier from Sjogren’s. In any kind of auditorium setting, I had trouble clearly discerning people’s faces or what was projected on the movie screen. I kept waiting for my vision to settle down, but it never went back to what it was prior to the HBO therapy.

So, it was high time a couple of weeks ago to get a check-up and new prescription. Unfortunately, our vision insurance only gives a discount on new frames every two years, and I had just gotten new glasses last summer. Fortunately, however, a local college here trains optometrists, and as long as you are willing to take the extra time for an exam by the students, you get a 50 percent discount on frames at the college’s frame shop—also a training venue. It’s a great deal, and well worth being a guinea pig for the students, who are lovely, very earnest and dedicated to getting it right.

I picked up my new frames last Thursday. They are wonderful. Not only can I once again see all the leaves on trees and easily read signs when I drive, but I am now enjoying transitional lenses, which turn amber-brown in the sunlight. My eyes are incredibly light sensitive due to Sjogren’s dryness, and I have constantly fumbled with switching from clear lenses to prescription sunglasses when going in and out of buildings on a sunny day. Now the lenses do the work for me.

I’m still getting new prescription sunglasses. The one hitch with transitional lenses is that they don’t get completely dark in warm weather. The optician explained that the lenses are temperature sensitive, as well, and turn their darkest in winter months. Given the heat we’re sweltering in lately, I need more visual protection for summer.

But I’m happy. I can finally see what I want to see again, without eyestrain or fatigue. What a blessing.

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 Credit: David Travis

What Comes Next

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This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.

At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.

Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)

Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.

August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.

There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take 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. Please view Privacy Policy here.

Image Credit: David Monje

Operating Instructions

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This one’s short.

In Anne Lamott’s Operating Instructions, a memoir of her son’s first year and her struggles as a single mother, she recalls this anecdote about writer’s block:

. . . I remembered the other day a weekend I spent with my family at our cabin in Bolinas when I was seven or eight and my older brother was nine or ten. He had this huge report on birds due in school and hadn’t even started it, but he had tons of bird books around and binder paper and everything. He was just too overwhelmed, though. And I remember my dad sitting down with him at the dining table and putting his hands sternly on my brother’s shoulders and saying quietly, patiently, “Bird by bird, buddy; just take it bird by bird.” That is maybe the best writing advice I have ever heard.

Lamott went on to write, among other books, Bird by Bird, which is, indeed, one of the best writing books out there. But her father’s advice applies to many other situations, too—when there’s too much to do, too many deadlines, too many uncertainties, too many worries, just too much stuff. Nothing big and complex and important ever gets solved or resolved in short order, be it creating a work of art, managing a chronic disease or anything and everything in-between. Bird by bird.

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 Credit: Rafael Rodrigues Machado

Tin Man

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Two-and-a-half years have passed since I last had calcium removed from the bridge of my nose, an unhappy complication of my particular variant of scleroderma. So it was that I found myself Monday morning in the exam room of my ENT plastic surgeon, once again assessing what looked like a gray clump just below the skin.

According to my medical records, this is the sixth time I’ve had the procedure over the past 15 years or so (fifth time by this specialist). So I was pretty sure of what to expect.

Except my disease had decided to play a little trick. Instead of the calcium being content to attach to my septum, it had sprinkled itself into the skin, as well. This meant that he would have to remove an ovoid-shaped centimeter of skin above the clump, to excise all the calcium sprinkles as well as the main culprit.

“You’ll have a scar,” he said. I replied that I didn’t care. No worse looking than a gray bulge on my nose, and certainly easier to cover with a little foundation.

The main issue for me was to avoid lidocaine with epinephrine, the local they gave me last time that caused heart palpitations, back pain and a total sense of being out of whack for about 24 hours. He prefers it because it reduces blood flow to the excision, but I’ve had this procedure done enough times before that combo was popular, and I knew it could be done.

The team—a resident, a fellow and my doc—conceded to my request, and we went ahead. Five shots of lidocaine later, the bridge of my nose was numb. I could not feel the scalpel. But as has always been the case, I could certainly feel the grinding of the surgical tools as he scraped away the calcium. Some of the tiny pieces flipped out, one onto the corner of my closed eye, another on my neck. Within about five minutes, he’d removed it all.

Seven sutures and the incision was closed (although, as he was stitching me up, he wondered aloud if the sutures would actually pull the skin all the way back together—which, he added, was not a problem, as a bandage covering the incision would enable it to heal, but this was rather disturbing, as I imagined exposed bone on the bridge of my nose—then he remarked that it was closing up just fine—good grief).

Then came the surgical strips. First some (I believe) antibiotic ointment and one strip. Then some kind of liquid glue that smelled a bit too much like Duco Cement, then more layers of the strips. When they were done, my nose looked like the Tin Man’s from the Wizard of Oz. A little of the glue dripped into the corner of my right eye and burned like crazy.

“I said to keep your eyes closed,” he chided. Thanks a lot. Fortunately, the resident was more helpful with some sterile saline eye drops.

He was also kind enough to give me a prescription for a few Vicodin, after the specialist left the room. (The latter considered pain meds unnecessary and assured me that Tylenol and Ibuprofin would be ample, but I’ve been through this enough times to know that the first 24 hours can be quite unpredictable for pain.)

Al had accompanied me to the appointment, thank goodness, because there was no way I could drive home with a burning eye. It took dozing in the car for an hour plus a two hour nap at home to ease the inflamation. So far, as I write on Monday afternoon, I’ve been able to avoid the Vicodin, but it’s good to know I have it available for sleeping, if necessary. I also took the precaution of consulting with my infectious disease specialist ahead of time regarding taking an antibiotic prior to the procedure and for the next seven days, because I am so prone to infection.

So, now, it’s all about healing. I have to keep the steri-strips on for the better part of the week, unless they fall off by themselves. One is taped to pull up the tip of my nose a tad, to relieve stress on the incision. Eating and drinking feel a bit weird, as a result. I have to be extra careful if I have to blow my nose. But I can sit at my desk and do a little writing. The weather is quite warm, which is best for my circulation. And it’s done . . . at least for another couple of years.

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 Credit: The Tin Man. Poster for Fred R. Hamlin’s musical extravaganza, The Wizard of Oz. Poster print, lithograph, color, 105 × 70 cm. Created by “The U.S. Lithograph Co., Russell-Morgan Print, Cincinnati & New York.” Library of Congress, Prints and Photographs Division. Courtesy of Wiki Commons.