Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Stuff and Nonsense

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The older I get, the less stuff I want to own. Al and I have been married for 30 years, and we’ve lived in our current home for 16. When we moved here, we brought a lot of boxes with us that we have yet to unpack. Since then, we’ve acquired more stuff. When you have the space, you fill it.

closetBut a lot of that stuff is no longer needed, no longer functional or just plain in the way, collecting dust. The stuff in good condition that’s outlived its usefulness for us could be beneficial for someone else. And whatever can’t be repurposed or recycled just needs to be tossed.

So, fueled by our recent bedbug scare—a false alarm, thank goodness, but enough of a scare to make me realize it’s high time to declutter—Al and I devoted a day-and-a-half over Labor Day weekend to getting rid of stuff. We’re far from finished, but we made a good start.

My first goal was to purge my wardrobe. I targeted anything that no longer fits (time to stop deluding myself that I will someday be able to wear clothes from when I was 10 pounds thinner), that I haven’t worn in years or that I really don’t like but have held onto for sentimental reasons. I not only went through my closet, but also every drawer in my bureau and nightstand.

And I found a lot of stuff to give away: mom jeans, sweatshirts and T’s, a couple of favorite jackets that I’ve tired of, shoes that I’ve loved but can no longer wear because my feet are so sensitive, hats that once looked good on me but don’t now because my face has thinned with age and scleroderma. I parted with some scarves that had been my mother’s, which I’ve never seriously considered wearing, a good overcoat that dwarfs me, silk blouses I haven’t touched in years. I filled ten bags.

At the same time, I also found some clothes that I was happy to rediscover: some silk liners that will keep me warm this winter and my good dance sneakers, which I thought I had lost somehow. Now that I’ve been walking more and building up my endurance, I’m planning to give Zoomba another try, with the right shoes.

We also tackled some of the clutter in our basement. Al had the brilliant idea of bringing a big box of old looseleaf binders to a neighborhood youth center, where kids study for their high school equivalency diplomas. I went through the very stuffed top drawer (out of five) in my old filing cabinet and reduced the contents to about two inches of papers that I want to keep. (No, I really don’t need to save every single student paper I graded during my years as an adjunct writing instructor at Clark University in the 1980s.)

After all that sifting, sorting, tossing and bagging, we brought a carload over to Goodwill, including my clothes, some of Al’s, bags of wire dry-cleaner hangers, old purses and knapsacks, and other miscellaneous stuff. Al set out bags and boxes for recycling on the curb. It was all gone the next day.

There is still a lot to do. It’s a project that will take us well into the colder days of fall. But it feels so good to be down to what I really enjoy owning, rather than holding onto stuff just out of habit, laziness or misplaced sentiment, that I’m inspired to keep at it. It’s true. Less is more

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.

Rash Conclusions

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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.

Theory of Relativity

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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.

Fly Away

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When we moved into our home 16 years ago, one of Al’s brothers gave us a squirrel-proof bird feeder as a house warming gift. Last month, we finally hung it on the Norway Maple in the back yard.

Our delay was due, in large part, to Ginger. A frustrated huntress her whole life (she was, after all, a Golden Retriever), she would have had conniption fits with so many birds in the back yard. Now, with her gone, it’s time to give wildlife its due.

birdsAnd so, my morning’s entertainment, as I eat breakfast, is to watch the birds at the feeder. This is, without question, one of the best antidotes to stress that I have ever discovered. For me—not for the birds.

In fact, our backyard feeder has become quite the point of contention. A blight of house sparrows (yes, “blight” is the actual term for a group of them, or, if you prefer, a “humiliation”) has taken over the feeder. I had no idea they were so aggressive. They have batted away chickadees and house finches and scared off nuthatches. No cardinals have visited the feeder yet, despite the fact that we’ve filled it with black oil sunflower seeds (which house sparrows supposedly don’t like—not true). Morning doves, being ground feeders like their pigeon cousins, clean up what drops below, along with a chipmunk.

I can vouch for the manufacturer’s promise that the feeder is squirrel-proof. One particularly inquisitive gray squirrel has tried numerous ways to get at the seeds (I know there’s something in there!) by climbing all around it, and even going so far as to grab and pull down the springy perch. But so far, it hasn’t found a way to get the goods (though I must say, as a former psych major, the squirrel’s attempts are a fascinating study in learning styles).

The feeder’s hopper is full. When we return from our vacation at month’s end, I wonder how much will be left and if the sparrows will still dominate. Maybe the house finch, with its beautiful scarlet head feathers, will have finally told them off. Either that, or we’ll have a lot of house sparrows nesting in our eaves.

Meanwhile, as I make final preparations for our European travels, checking off items on to-do lists that seem to propagate over night, trying to plan for every possible health-related contingency and knowing that I will just have to deal with whatever happens, scrambling to finish off work for clients and my sewing and last-minute purchasing, I will continue to watch the birds and cheer for the house finch, which grabbed a few seeds while the sparrows weren’t looking.

If all goes according to plan, as you read this, we will be in Berlin, the first of seven cities on our complicated itinerary that takes us from Germany to France to Belgium to England to Ireland. All in the name of research for my novel and visits with friends and, yes, adventure.

Time for a break from blogging. Whatever your own summer plans, I wish you well. See you in a few weeks.

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

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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