Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Walk This Way

· · 1 Comment

Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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.

Photo Credit: Francesco Maglione 

Hands On

· · 3 Comments

How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

photo-24This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

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.

Plant a Seed

· · 8 Comments

In Australia, the sunflower has become the symbol of scleroderma awareness—because those of us with the disease feel better in the warmth of the sun. I like this idea a lot. Enough, in fact, to consider trying my hand at planting some sunflowers, if not this summer, then next.

1428247_41776650Yesterday, on June 29, scleroderma associations around the globe marked World Scleroderma Day. In nearly two dozen countries in North America, Europe and Oceania, a month of awareness-building culminated with a host of activities, from hospital presentations and meetings of scientists to art gallery exhibitions and a social media series of 25 second videos, in recognition of the estimated 2.5 million people diagnosed with scleroderma worldwide. Today, June 30, the need for a cure will be presented to the European Parliament in Brussels.

June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s later work was strongly influenced by his disease, even as his last few years were among his most prolific.

Paul Klee’s legacy helped to inspire the formation of the World Scleroderma Foundation, which is based in Basel, Switzerland, and draws together world experts in scleroderma research and patient groups in an effort to support research for a cure. The WSF’s lead patron is Klee’s grandson, Alexander, and his family.

While 2.5 million individuals with scleroderma represents just a sliver of the world’s 7.3 billion people, The WSF makes a compelling argument for the importance of scleroderma research on its website: Not only is the search for a cure needed for the millions who suffer from the disease—most of whom are women of childbearing age—but also scleroderma is a “linchpin disorder”: 

A breakthrough in understanding scleroderma would doubtless have a strong impact on many other diseases involving abnormal scarring and blood vessel injury. This might include conditions as diverse as interstitial lung disease, intestinal hypomotility disorders and many illnesses with blood vessel injury as their basis.

Which brings me back to sunflowers. Each sunflower head can contain as many as 2,000 seeds, each of which, in turn, with the right soil, sun and moisture, becomes another sunflower. If we could find a cure for scleroderma, imagine how many other millions of people who struggle with related diseases could be helped, as well.

Plant a seed to find a cure for scleroderma. Visit wolrdsclerodermaday.org to see what’s going on around the globe in support of research for a cure, or make a donation here in the U.S. to the Scleroderma Research Foundation or the Scleroderma Foundation. We’re all in this fight together.

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.

Two Steps Forward, One Step Back

· · Leave a Comment

I made good on my exercise commitment last week—I got to the fitness center twice, once for my barre class and once to ride the stationary bike for 25 minutes, plus I took half-hour walks on two other days.

Then I developed an ulcer in the nail bed of my left big toe. It’s infected. I have no idea how this happened. I am meticulous with skin care. It might have been as simple as picking up bacteria while walking around in sandals. Or just bad karma.

So, I’m back on antibiotics, limping a bit, carefully testing pressure on my left foot. I was able to walk around the block on Monday and get through most of the exercises in my barre class last night.

This is the minutiae of living with scleroderma. Just when you think you have everything in balance, something kicks it out of whack and you have to recalibrate.

But there are much more important issues in the world than an infection in my big toe.

On Sunday, at Al’s initiative, I joined my husband, our rabbi and cantor, and about a dozen other members of our synagogue at morning services at the local A.M.E. congregation. We came to show solidarity over the tragic shootings at the historic Emanuel A.M.E. Church in Charleston, S.C., last week.

Al had called ahead, the previous Friday, to ask if it would be okay with the pastor if we came. We were welcomed with thanks and gracious hospitality. Other members of the community came as well, in a spontaneous show of support. It was heartening to be part of a mixed sea of faces, all gathered to assert that what happened in Charleston was terribly wrong, that we care, that we must pull together as a society to end the violence and bridge the widening racial divide in this country.

Will any lasting good come of all those people, from different backgrounds, gathered together in prayer on a Sunday morning? I cannot say. But I know we helped to comfort our neighbors and sent good will out into the universe, and that must count for something.

After the service, we went out with friends for a Father’s Day brunch, then to the art museum, then home. Al mowed the lawn. I lay down and rested my sore foot.

My toe will heal, albeit slower than I want it to, with a combination of medication and careful tending. I will get back to my exercise plan. There will undoubtedly be other physical setbacks, but I’ll deal with those, too.

Would that our nation’s ills could heal as readily.

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.

Photo Credit: Stròlic Furlàn – Davide Gabino

Pep Talk

· · 4 Comments

No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols