Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Waterlogged

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As every schoolchild knows, water flows downhill. And when its established route is blocked, water will always find a detour.

splash-1192331-639x500These basic facts of the natural world became all too clear to us recently, when we encountered a major plumbing problem in our basement. I almost wrote “disaster” or “catastrophe,” but those words only apply to floods, natural or manmade. Our issue was simpler, by comparison—though a very expensive lesson about what not to put down your toilet.

It all started a couple of weeks ago, after we’d finished a lot of holiday cooking and dishwashing, when I went into the basement to put a large pot of leftover soup in our downstairs refrigerator. To my astonishment and dismay, the entire floor on the unfinished side was wet, and the overflow sink next to the laundry was half full of standing water. The top of the washing machine was sprinkled with droplets. I yelled for Al to come downstairs and take a look with me. No signs of any leaking pipes in the ceiling. No choice—time for the plumber.

The first plumber, Mike, arrived within the hour. He took a look at the situation and quickly diagnosed it. Our home’s main drain was blocked. Water had backed up into the sink and overflowed all over the basement floor. He set about snaking the line that ran from the sink, under the concrete floor to the main drain from the house. But that’s as far as he could go. The sink was still backing up if we ran water from upstairs. He told us not to flush the toilets.

So the next step required a drain specialist. An hour or so passed until the next plumber arrived. He didn’t introduce himself, but I’ll call him Dave. He used a larger snake to get into the main line from our house to the city sewer. Within an hour, he had cleared a big glob of grease from the main line. “It’s like cholesterol,” said Dave. “It just accumulates over time.” We tested the system by flushing the toilets a couple of times, and all seemed fine.

At this point, I was relieved and felt we’d gotten off pretty easily with maybe a $250 plumbing bill. But water finds many creative ways to flow downhill.

The following Sunday, Al and I decided to do more decluttering in the finished basement family room, part of our mega-project for the fall. As we began sorting through the girls’ old collection of arts and crafts boxes, we discovered that the bottom shelf of the plywood built-in cabinet was wet, as was the rug. Quite wet. No sign of leaking pipes. We mopped it up as best we could, assumed that water had somehow flowed from the other side of the basement from the earlier mess, and put on a fan to help dry it up after we’d finished sorting through the clutter.

Everything seemed to be fine. I checked the rug a few days later and it was drying out, so I turned off the fan.

Then, on Friday night, after we’d finished washing dinner dishes, something nudged me to go downstairs and double-check the rug. It was sopping wet. The laundry sink was half full. We pulled everything out of the cabinet’s bottom shelf and discovered a sliding panel. From behind the panel, I could hear water hissing. Al forced the panel to the side, and we saw a series of pipes and valves, but no drips. One pipe had an open end that was covered with duct tape, for some mysterious reason.

Al went upstairs and turned on the kitchen sink, as a test. Suddenly water started pouring out of the duct-taped pipe. It had backed up again into the laundry sink and was, for some reason, overflowing into this pipe and onto the cabinet shelf and rug. So, now we knew why the rug was wet. And why it had been wet before. And how much time had elapsed from the first soaking to this one.

Over the weekend, we called our regular plumber again. Despite the fact that we would be paying extra for after-hours, and the on-call plumber’s boss would not reveal weekend rates, it couldn’t wait until Monday, because we could not safely flush the toilets.

This time, John came. He was very good natured and quickly assessed the situation. The main line was again partially blocked, and the pipe behind the cabinet had connected to another sink at one time, but was never properly capped. Fixing that problem was easy. The blockage proved stubborn. He tried snaking into the main line from the house and was able to relieve some of the issue, but it was soon clear that we needed another drain specialist. “Looks like some kind of a towel,” he commented, pulling out a small, black, rectangular piece of cloth-like material.

At this point, I was feeling uneasy. Not only were the overtime hours adding up, but I had a sneaking suspicion that I knew the cause of the blockage: so-called flushable bathroom wipes. I have relied on these for years for personal hygiene, because my fingers are so damaged that toilet paper alone does not do the trick. I was going to need another strategy.

John’s drain specialist was unavailable that afternoon, so I searched Angie’s List and found another plumber nearby. His company also charged extra for weekends, but at least, this time, he quoted me a rate over the phone.

Joe arrived within an hour. He came with heavy-duty snaking equipment, enough coil to reach 100 feet, if necessary. He took a careful look and agreed that the main line was the place to start. But he wasn’t sure if that was the whole issue. He was correct.

Four hours later, after snaking the main line to the street twice and the main standpipe, through the pipe under the concrete floor, out into the main line to the street, Joe was finally able to clear the system. He explained a lot about our plumbing as I watched him working very hard. I got plenty of exercise going up and down the stairs to run the tub and flush toilets, so we could check water flow. At least a dozen of those little towelettes came up, snagged in the snake coils, to confirm my suspicion. The wipes were most assuredly not flushable. One very expensive lesson learned. If I still use them, I can’t flush them.

But we’re not done, yet. Vibrations from snaking the old cast iron standpipe caused something to crack in the connection between the kitchen sink and the pipes above. The pipes are in a wall. So we have more expensive repair work to do this week. And we can’t use the kitchen sink until we finish the job.

“It’s only money,” said Al, philosophically.

Joe cleaned up his mess. He made notes for the next plumber about what he’d done. His bill was expensive, but he’d earned every cent. We went out to dinner, then to Home Depot to rent an industrial vacuum to suck the water out of the rug. We’ll probably have to replace the rug sometime soon, but not until the rest of the mess is paid for.

At least we found a good plumber. As Joe said, “You ask five different plumbers and you’ll get five different answers.” Now I know which one to ask, first.

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: Patrizia Schiozzi

52 Pick-up

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Sunday was one of those Goldilocks-and-the-Three-Bears kind of September days—not too hot, not too cold. Just right. The sun was shining, the sky was blue, the air had a crisp edge and there was a pleasant breeze. Perfect weather for combining exercise with a fun outing—a mile-and-a-half walk to the annual fall arts-and-crafts street festival in my hometown.

chalk heartAl and I set out around 2:30 with a goal of finding a wedding present for some young friends who are getting married next month. As we walked along shaded streets, he noticed a plastic strap, the kind that binds packing boxes, lying near the curb. He picked it up.

“Please don’t collect any more litter until we’re on our way back,” I said.

“I have a halo,” he said, placing the packing strap around his baseball cap. I had to laugh. We continued on our way.

Al makes a habit of cleaning up litter wherever we go. This used to drive me crazy, but I’ve made my peace with it—just his way of being a good citizen and tending the planet. He’s promised me he won’t pick up cigarette butts or food. And he washes his hands thoroughly when we get home. This is the one piece I insist on, so he doesn’t pick up germs or spread them to my hands.

Soon we reached the street festival and poked around hundreds of booths selling jewelry, photos, ceramics, skirts sewn from recycled T’s, henna painting, candles, soaps, jams, weaving, hand-spun wool, recycled sweater mittens, hand-turned wooden bowls and more. We ran into friends. We watched a fencing exhibition, a West African dance demo, a juggling unicyclist. I stopped to draw with sidewalk chalk. We found a wonderful local artisan whose woodworking we admired for the wedding gift. Al bought a ceramic snail; I found a burgundy fabric purse for evenings out.

On the way back, Al pulled out the plastic shopping bags he’d stuffed in his back pocket and began picking up litter. There was no shortage. Plastic water bottles were abundant. He scooped up soda cans, cigarette cartons, aluminum pastry trays, plastic bottle caps, random bits of paper, nips bottles. I started spotting for him—a plastic bottle stuck in a stone wall, a whisky bottle, lids from drinks. Really, it’s astonishing when you start paying attention, how much trash people toss on the street without thinking about the consequences. I’m sure a cultural anthropologist could draw some interesting conclusions. But, basically, a lot of people are just plain careless.

We moved to the side to let a couple pass us on the sidewalk. “That’s so great that you pick up litter!” said the woman. “Thank you!”

Al just smiled and kept going. He separated recyclables from garbage and emptied one plastic bag in a park garbage can along our way, then refilled the bag as we walked. By the time we got home, he had collected dozens of bottles and cans for our recycling bin and more trash for Monday morning’s pick-up.

I commented that there was hardly any litter on our street. “You’ve probably picked it all up!” I said. Al laughed. He went straight to the bathroom sink and washed his hands with plenty of soap. He’d lost his halo earlier. But, not.

Gotta love him.

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.

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.

Orange Moon

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With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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.