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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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managing chronic disease

Rash Conclusions

Evelyn Herwitz · August 25, 2015 · Leave a Comment

When I was maybe three years old, I had a penchant for caterpillars. I loved to let them crawl all over my hands (even though they caused my skin to peel) and would fill mayonnaise jars with sticks and grass, load them with my insect friends and, with my mom’s help, punch holes in the top so they could breathe. Within a day or two, they always died. So much for the budding entomologist.

photoBut my old fascination with the insect world was rekindled this past Sunday, when Em and I went to a botanical garden to see a display of live caterpillars. These were astonishing creatures, some as tiny and well camouflaged as a slender twig, others as thick as my fingers, bedecked in jewel tones. They crawled over docents’ outstretched hands or munched methodically on their favorite leaves. Said one visitor, “I feel like I’m watching someone eating corn on the cob.”

I went home marveling at the beauty of some of Nature’s humblest creations—until later that night, when I was getting ready for bed and noticed an odd series of red spots on my shins. The night before, I’d found a set of four on my right leg. This time, I saw a series of spots on the left. They didn’t itch. But they looked eerily like the connect-the-dots, after-dinner trail of a far more menacing insect—a bedbug.

Worried, given all the traveling we’ve done of late, I forced up the corner of our mattress to check the box spring. There, in a crevice, were two shed exoskeletons of some kind of small bug. I ran and got a piece of tape to extract them and tried to examine them under a magnifying glass. Even with that assist and bifocals, I’m just too farsighted to be able to see clearly. But I was convinced it was proof that I had brought bedbugs home with me from Chicago a few weeks ago.

Al could not dissuade me from my conclusion. He gave me a hug and went to sleep in our bed, and I went downstairs to try to sleep on the couch, too uneasy about getting more bites. I then proceeded to spend half the night agonizing. I looked up heat treatments for bedbugs and fretted over how we could cover the four-figure expense. I did Internet searches for the best contractors. I found way too much information about all the work you have to do to prepare for bedbug extermination. Finally, around four in the morning, I had worn myself down enough to fall asleep. I woke up at six, as Al prepared to go to work.

The A-rated local pest control company didn’t open until eight. At three minutes past, I called and described the situation. They asked me to text an image of what I found. I did my best to take a picture with my iPad, but with my clumsy, tired hands, could not focus it crisply enough for them to be able to ID the bug. So I got dressed and drove my taped sample over to their office.

After a few false starts with an uncooperative computer, their bug ID specialist successfully booted up and got a close look under her electronic maginifier. Lo and behold—it was not a bedbug, after all, but the shed larval “exuvia” of a carpet beetle. Ironically, their larvae resemble tiny caterpillars. In fact, they have hairlike protrusions that have earned them the nickname of “wooly bears”—not, however, to be confused with the same insect as those cute, fuzzy, brown-and-orange caterpillars that are supposed to predict the length of winter.

We don’t have carpeting. But carpet beetles aren’t all that particular. A common household pest, they don’t bite. They just munch on organic matter other than people. Much like all those caterpillars chomping away at leaves like corn on the cob. This larva may have shed its outer skin years ago, for all we know. If we had an infestation, the bug ID specialist told me, we’d know, because they’d be all over the place.

I was greatly relieved. And exhausted. I concluded that this whole episode was a major kick in the pants for us to finally declutter our bedroom and the rest of the house, and deprive any lingering carpet beetles of their smorgasbord of stray fiber delicacies.

As for those spots on my leg, I have no clue what they are. If they get worse, I’ll have to see a dermatologist and get some answers. For now, they don’t itch, which is a good thing. One more chapter in the book of strange skin changes. Whatever the cause, if I ever find out, I’m just grateful I can sleep in my bed, again.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: anxiety, body-mind balance, managing chronic disease

Walk This Way

Evelyn Herwitz · August 18, 2015 · 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 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: exercise, feet, managing chronic disease, mindfulness, resilience

Theory of Relativity

Evelyn Herwitz · August 11, 2015 · 2 Comments

Just over two weeks ago, we were in Ireland. How can that be? I feel as if a month has passed, already.

IMG_0438It’s so hard to hold onto that transformative sense of being elsewhere, once you’ve re-immersed in your everyday life. We have pictures and stories of our travels, and we’ve been sharing with friends and family, but with each day that passes, the details are a little less sharp. The minutiae of the moment clamor for attention.

Part of the reason the trip seems so distant is that I was in Chicago on business last week. This worked out better than expected, given that a mere seven days separated our European journey from my flying halfway across the U.S. on my own. After we had traveled all over Europe in two weeks, going to Chicago and even switching hotels once in three days was a snap. I was so relaxed about packing and flying that I surprised myself. Usually, I’m stressing about every detail. This time, I hardly did any preparation in advance. And I didn’t have any health complications along the way, thank goodness.

So even if our vacation seems like a long time ago, the travel experience has changed me. I know I can manage a lot of details on the fly. I know I can manage a health flare while far from home. I know I can do a lot of schlepping, get very tired, but recharge and keep going.

All of this is very encouraging. I would love to see more of the world before I really am too frail to travel.

In the days leading up to our Europe vacation, I felt as if I were jumping off a cliff. What if I couldn’t handle it? What if one of us got really sick on our journey? What if we lost our passports or they were stolen? On and on.

I’ve had so many episodes of strange, scleroderma-related health problems–infected ulcers, a resorbing tooth, spontaneous cellulitis–while on short trips not far from home, that I really didn’t know what to expect. The fear of illness in a foreign country has kept me from considering a bigger trip for years.

I prepared as best I could for all contingencies, including buying a good travel insurance policy that covered us for serious health complications. I carried an ample supply of antibiotics, which paid off when I did, indeed, suffer a bout of cellulitis in my right foot at the beginning of our travels. I planned our itinerary to build in opportunities to rest (not enough, but at least I tried).

In the end, I learned that I’m stronger than I thought. And I also discovered that a half-week business trip in one city is easy compared to a two-week vacation in seven. It’s all relative–a matter of experience, testing your limits and finding out what you’re really capable of, as opposed to what you’re afraid you cannot do.

Onward.

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.

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Filed Under: Body, Mind Tagged With: body-mind balance, cellulitis, managing chronic disease, resilience, travel, vacation

Hands On

Evelyn Herwitz · July 7, 2015 · 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.

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Filed Under: Body, Mind, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease, mindfulness, resilience, travel

Two Steps Forward, One Step Back

Evelyn Herwitz · June 23, 2015 · 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

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, community, exercise, feet, managing chronic disease, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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