Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Thumb’s Up

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I’ve been getting clumsier in recent months. I drop all kinds of things—keys, coins, bottle caps, you name it, anything that involves dexterity and a good grip.

hands-1436113-640x480The other day I was cooking and picked up a full bottle of olive oil by the top, not realizing the cap was loose. Unable to hold on (fortunately, the bottle was plastic), I dropped it on the kitchen counter, spilling oil all over my favorite cookbook.

The cookbook is now well stained—not a disaster, once I unstuck the pages, since I consider my spattered cookbooks to be well-loved, like the Velveteen Rabbit. But still, I wish I hadn’t made such a mess.

There’s a good explanation for all of this klutziness: My right thumb (I’m right-handed) has built up layers of dead skin over abnormal thickening. It’s gotten so bad that it’s becoming difficult to hold even a pen or pencil. I’ve been tolerating this as best I can, bandaging it and even applying some urea emulsion cream that I got from my podiatrist to try to loosen the layers so I can remove them.

But none of this has really worked, and I realized this winter, when Al’s employee health insurance coverage improved (thank goodness), that it was time to see my (once again affordable) hand surgeon at Boston Medical and get his assessment. I knew my thumb needed debridement, and I knew I couldn’t possibly do it myself.

It took two months to get in to see him, but I finally had my appointment last week. It’s been years since I last needed his help—once to remove stubborn calcinosis from my left thumb that had adhered to the bone, and another time to remove two surgical pins from my right index finger, left from previous hand surgery to correct a severe flexion contracture, which were causing pain.

Seeing him was well worth the wait. He is the antithesis of the stereotypical surgeon—patient, empathetic, willing to discuss all options at length. He took a look and commented that some of the pain I’m experiencing is probably due to more calcium stuck under all those thick layers of skin—right at the pressure point (why I can’t hold onto stuff).

I mentioned my bad reaction to lidocaine with epinephrine when I had calcium removed from the bridge of my nose last month. “I never use that combination with scleroderma patients,” he said. “The epinephrine causes the blood vessels to constrict.” Who knew? My other doc (and his resident, who gave me the shot) should have. And this is why I love my hand surgeon—he understands this disease really well.

He was not gung-ho about operating, because of all the risks of infection and my poor digital blood circulation that exacerbates healing. But he explained the choice as one of two options: either continue to live with it, as best I can, or solve the problem surgically. “That’s what we’re here for,” he said.

We agreed that I’d come back to see him in May, get a hand X-ray and discuss how to proceed. I could either have the surgery later that week or wait until June, when the weather is warmer (I hope), to boost the healing process. I have to balance my desire to take care of this as soon as possible with the most favorable conditions, including adequate time for my thumb to recover, pacing between family celebrations at the beginning and end of May, and anticipated balmy weather.

Of course, I can only guestimate the latter—the day of my appointment, the mercury hit 77° F, a record-breaking day in Boston for early March.

But at least there is a solution in sight. Meanwhile, I’ll just need to be more mindful when I pick up the olive oil bottle, or my house keys, or spare change from my wallet. And give myself a pass next time I drop something else.

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: Tibor Fazakas

Mouse Wars

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When my daughters were very young, one of their favorite bedtime storybooks was the lovely classic, Goodnight Moon. We had to find the little mouse hiding in each illustration. It didn’t matter how many times we’d read the book. Finding that mouse was the best part.

full-moon-1506114-640x480A little gray mouse in a picture book is fun to find. A real gray mouse is not. Especially when there are a handful and they are running around your kitchen. And living room. And office.

With this week’s bitter cold and stormy weather, mice have decided our home is a nice place to hang out. They like it warm. We have that much in common. I believe they’ve actually been with us for a while, but had kept to our garage, where we made the huge mistake of leaving a big bag of birdseed unattended for more weeks than I want to admit, after it was clear that some critter had chewed a hole through the plastic.

A couple of times last week, I noticed a chubby black mouse racing away from the bag when I went to my car. High time to clean up the mess, so I bought a plastic bin with a tight lid, put on a pair of work gloves to protect my hands, swept away all the dropped seed and tossed it in the back yard for the birds, and sealed up the rest.

Of course, this meant that the chubby mouse was now deprived of its meals. Which drove it into the kitchen. Midweek, I was sitting in the living room and thought I saw something dart across the kitchen floor. I looked again. Nothing there. I dismissed it as a floater in my eye.

But I was right the first time. All of a sudden, in the midst of the weekend’s storm (only three inches here, nothing compared to all the snow farther south), mice started running through our house. I saw two black ones Saturday night as the snow began to accumulate.

What to do? I hated the idea of killing them. I looked up alternatives online. According to the American Humane Society, house mice don’t do well if you release them to the wild. Plus the idea of live-trapping mice and then transporting them to a snowy field somewhere, in bitter cold, seemed a pretty cruel fate (let alone quite time consuming). Mice can carry viruses, bacteria and fleas. I have an autoimmune disease. We decided to go with traps that did the job quickly.

Al caught one mouse in an old fashioned wood trap Sunday morning. No way I could reset it with my hands. He left it set with more cheese before he went out. I settled down to work on writing my novel at the kitchen table. When I looked again, the cheese was gone. No mouse.

Al had to work all day at the hospital. I tried to concentrate, but I kept hearing scrabbling noises, then nothing, from the kitchen. By mid afternoon, at least half a dozen—maybe some were the same mouse, maybe not—had skittered around the first floor of our home. They were making me crazy.

One darted out of my office just as I was talking to my younger daughter on the phone about the invasion. It ran behind Al’s armchair, under the bookcase, into the dining room and disappeared. Another scooted around the kitchen and into a closet. A little mouse poked out from under the fridge and ran away. But then it or another mouse proceeded to squeak and squeal from somewhere behind the fridge. I actually opened the door to make sure it wasn’t somehow trapped inside.

I’d had enough. I went to the hardware store and bought three quick-kill traps that I thought I could manipulate. I came home and set them up with cheese—not before snapping my finger at least once. Not good. Mouse’s revenge, I suppose.

I set them out and went for a walk. The idea of sitting and listening for the traps to snap was making me very uneasy. But no caught mice when I returned. Instead, as I sat in the living room, trying to distract myself with the Sunday New York Times crossword, a gray-and-white mouse suddenly darted from under the bookcase, skirted a nearby trap without so much as a how-dee-doo, and ran through the dining room before exiting somewhere under the counters. Twice, one of the traps in the kitchen went off without catching anything. And there was more squeaking behind the fridge.

Finally I gave up and called Al at work. He was getting ready to come home soon. By the time the Patriots lost to the Broncos, the little mouse was dead. One down. We went out to dinner because I didn’t want to cook in the kitchen. How many more to go? For all I know, we have an entire extended family in our walls and beneath the floorboards. If the traps don’t do the trick, it will be time to call the environmentally responsible critter control experts and pay the price.

Oh, and by the way, there was a bright, full moon this weekend. 

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: Brandon Blinkenberg

Anniversary Waltz

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Last week, Al and I celebrated our 31st wedding anniversary. We agreed that we wouldn’t buy gifts. More important just to spend quality time together, a welcome break from the usual hectic midweek schedule.

OLYMPUS DIGITAL CAMERAWe shared a quiet, delicious meal and a bottle of wine at our favorite Afghan restaurant. Then, on Saturday night, we enjoyed an extraordinary performance by Cirque de Soleil. And we began to plan our next trip for this coming summer—another special adventure to look forward to.

All of this was good and lovely and memorable.

But it was a very different kind of sharing on Sunday night that once again impressed upon me the blessings of our three-decades-plus marriage.

I was in the process of cooking dinner, when I reached out to open my small Cuisinart to chop up some parsley—and smashed the tip of my still-healing, infected digital ulcer on the gadget’s plastic top. It really, really hurt. Like slamming your finger in a car door.

I yelled and cursed as I walked in circles around the kitchen, trying to breathe my way through the sharp wave of pain. Usually this passes within a minute or so, but this time I really did a number on myself. The pain would not quit.

Al had been reading in the living room. In the midst of my outburst, he walked into the kitchen, opened his arms and gave me a big, soothing hug. It didn’t take the pain away, but it did help me to relax a little, the first step in gaining control of acute pain.

During the course of our meal, he proceeded to distract me, since I was still pretty uncomfortable. By the time we finished, with the help of some Tylenol, I was doing a bit better.

As Al washed the dishes, I reached into the cabinet near the sink for a mini Three Musketeers, left over from Halloween.

“You deserve that!” he said. I laughed, and agreed.

Just another episode of managing my scleroderma. We’ve been through this many times. He knows what to do, without my asking. And he never, ever complains about all the mishegas that this disease has brought to our marriage over these many years.

That is something worth celebrating. Love you, Al.

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: Naama y.m.

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