Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Slip Sliding Away

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November disappeared at midnight, slipping out the back door. No snow here yet, but the trees are mostly bare now, except for the oaks that hang onto their shriveled brown leaves well into winter. Temperatures have dropped, and I have to propel myself out of the house for my afternoon walk, bundled in my long down coat and warmest hat. Even wearing insulated gloves, my fingertips burn from the cold.

fallen-leaf-2-1504246-639x425But walk I must, or I get far too stiff working at my computer much of the day. The fresh air clears my head and the exercise gets my heart pumping and blood circulating. It also helps me to remember what I need to do next.

All of my friends in their sixties joke and commiserate about our less-than-sharp memories. There are the words that won’t come when beckoned, the names that elude recall, the purposeful trips to one room or another—punctuated by the inability to remember why it was necessary to go there in the first place.

It’s reassuring to know I’m not alone in this, but I find it disconcerting, nonetheless. All too often, I’ve been misplacing things—my cell phone, or keys, or a book that I was sure I had in one room that seems to have walked to another all by itself. I’ve left the house, certain that I had everything I needed for the day, only to realize when I’m too far from home that I forgot something. I should use a pill minder to be sure I’ve taken all my meds on schedule, even as I hate to admit I need it.

I don’t know if this is simply due to the natural aging process or the fact that I need more sleep or some combination thereof. Hormonal changes since menopause certainly muddied the waters. I feel like my memory gets worse when the days grow short and it gets too dark, too early—it’s time to hibernate, and I just can’t hold as much information in my head.

I keep a detailed journal, files of correspondence and spread sheets to track my work for my clients. I’d be lost without those records. I maintain similar files for family business and long to-do lists. I have a notebook that I carry with me to all my doctor’s appointments, or I’d never remember our conversations. But I used to be able to manage all the day’s details without writing everything down. No longer.

I also can’t remember all the details of family history the way I once could. I used to have vivid memories of my childhood and our early years with our own children. Now, my younger daughter will mention an event that’s as clear as day to her, but I have to dig deep to picture it. Very frustrating.

I suppose that as the layers of memories accumulate over decades, there’s just that much more to sift through. But I want to be able to remember everything the way I used to. Ironic that I can remember how I used to remember. It’s just the what that’s acquired a mind of its own. I keep wondering if this is just a temporary state of affairs, or if I’ve reached some kind of tipping point that requires acceptance of the inevitable: the older I get, everything just takes longer, including memory recall. At least I have all my journals—a trunkful—to fall back on. And all of my other writing.

As for the immediate challenge of memory lapses, it’s time to develop some new strategies. I’m sure there are plenty of apps to help, although keeping a small notepad with me at all times is probably the best, most obvious, low-tech solution. As long as I can remember where I put my pen.

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: fabrizio turco

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.

Hands On

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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.

Beta Test

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This summer, I’m in charge of Emily’s fish. He’s a cobalt blue Beta named Stitch, and he lives in a large glass bowl on our living room mantel, our little guest while Em’s away at an internship for her master’s degree program.

So far, I’ve succeeding in keeping him alive. This is remarkable, because when our girls were in grade school and went through a phase of having Betas (notice the plural), at least three of them died in fairly rapid succession.

This may have been due to the fact that we kept the fish bowl on top of the shelving that held our TV, and the water could have overheated. Or, more likely, it may have been due to the fact that I tried to clean the bowl and change the water every so often and probably shocked the poor fish to death.

This time, all I have to do is give Stitch two pellets of food every morning and add a little distilled water to his tank when the level drops by about an inch. Easy enough.

It took me a few tries to figure out how best to give him the pellets. They are very tiny, and I can’t grasp them with my fingers. So I scoop them out of their bag with a plastic spoon. Then I drop them into the water, being very careful not to drop the spoon in the water, too. That would not go over well.

For Stitch, this is the highlight of his day. As soon as I walk over to his tank and say hello (yes, I do talk to him), he swims over and jiggles around, fluttering his translucent blue flippers in what I can only describe as great fishy excitement. He doesn’t always find the pellets right away, so I tap the bowl in the right direction to give him a hint. Then he gulps them down. And swims back to see if I’m going to give him any more.

At this point, I say good bye and walk away, so as not to raise his expectations that there’s more food to come.

Really, it’s amazing how much you can commune with a fish.

I wonder what he’s thinking in his little Beta brain. Clearly, he’s learned how to recognize me, even if he doesn’t have a clue who or what I am, other than his source of food. I wonder if he hears the music on the stereo or the radio. Or our voices when Al and I are talking.

Mostly, he just floats gracefully around in his bowl, up and down, around and around. Sometimes he sleeps. Sometimes he zig zags. Sometimes he flutters. He seems content. Nothing to do, but just be.

I almost forgot to feed him one day last week—trying to do too much in too little time, juggling a lot of projects and family events and other responsibilities. I’m traveling on business again later this week, and I’ve been pushing to finish one thing and another before I go away overnight.

I’ll be sure to say goodbye to our grandfish before I leave (Al’s in charge while I’m away). And try to remember, in the midst of all my busyness, what Stitch does so well—just be.

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.