Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Just Living

· · 1 Comment

rain-1199464-639x425It’s raining today as I write, a chilly, damp, late March Monday. I’m still in layers of sweaters. The heat is on. I’m wearing my spring green wrist warmers to thaw out my fingers and remind myself that warmer weather is on the way. Really.

But this is not what’s preoccupying me this morning. Nor are my latest episodes of living with scleroderma. (Should I write about the odd tic in my left eye? my search for adaptive tools? the challenges of getting dressed?) No. What’s on my mind is just living, right now, right here, wrestling with all that’s at risk around us.

There is the U.S. presidential election, which has me profoundly worried. I have no intent of turning this blog into a political platform for my personal views (or anyone else’s, for that matter). But I have become a political junkie, reading, watching and listening to the best news analysis I can find to stay on top of developments. I also am inexorably drawn to fiction and histories about the rise of demagogues and Fascism. And I am struggling with my own role: What should I be saying, writing, doing in response?

There are other issues that weigh heavily on my mind—not only the proliferation of terrorism, once again making headlines with last week’s attack in Brussels, but the insidious cultural conflicts fueling this evil; the growing disparities between the haves and have-nots of this world and where that will lead as our planet becomes more crowded (which is intrinsically connected to the rise of terrorism); the existential threat of global warming. And, again, I struggle with my response. What will I be able to say, at the end of my life, that I did to help set things right?

I am not one who can easily compartmentalize and shove all this to the back of my mind. In some ways, I envy those who can. I always have to catch myself from spinning in my head about all the what-ifs, whatever is making me feel vulnerable. These days, however, I feel like I’m in a constant state of orange alert. (Obviously, this is not good for my health—physical, mental or spiritual.)

By comparison, my scleroderma and the challenges it presents are just a lot of white noise. I’m confronted by it every minute of every day—how to pick up a cup, handle a pen, turn a key in a lock, put on a sock, brush my teeth. It is frustrating, angering, time-consuming, exhausting, sometimes painful, often a real nuisance. But it is not what concerns me most in my life.

What concerns me are my family, my art, my work, my friends, my community, my country, our planet. What truly preoccupies me is how to live a meaningful life, how to make my small corner of the world a better place. And this is the real point of writing this blog. Living with a chronic disease can absorb a lot of physical, mental and emotional energy—for many good reasons. But it simply is not and cannot be all that we are about. Scleroderma is only a piece of me. It is far from all of me.

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: Griszka Niewiadomski

Excavations

· · 2 Comments

Decluttering the house remains high on my list of things I want to accomplish this year. So last Thursday, Al and I agreed to take time out from work responsibilities to once again tackle the basement family room.

recycling-1239302-639x426It’s really a family room in name only, now. Both of our daughters are grown and living on their own, and neither of us spends any time in that space anymore.

The television is huge and old and no longer attached to our cable, because we would have had to pay for an extra signal conversion box. The DVD player stopped functioning at some point. Toys and games from the girls’ childhood gather dust.

We had started the decluttering project last fall, but stalled when we discovered a major plumbing leak, fixed soon after. The room needed to dry out and, well, we got busy. Not that I didn’t think about it every time I went down to the laundry room on the other side of the basement.

But one of my greatest frustrations with my hands is that I cannot take on any part of major cleaning and organizing on my own. If I try to dust or vacuum, I inevitably smash my fingertips, which are severely resorbed and very painful when banged. Same goes for when I pull old papers out of boxes or move cartons or sort through books.

Fortunately, Al gets it and knows how to help me. He pulls stuff out of boxes and off the shelves, reviews it with me, and then we make a decision about what to do with it: donate, recycle or toss.

We must have sorted, stacked and bundled for at least four, maybe five hours. In the process, we filled several cartons and bags with print materials from my years working in higher ed marketing (I saved my favorites and sent the rest to recycling). I fished through a carton of old sewing patterns, many of which were decades old, and relinquished them for recycling, finally admitting to myself that they were really too dated to ever reconsider making. (The only ones I did save were patterns for a teddy bear, a timeless summer dress and my wedding gown.)

Of the toys, we saved the classics—LEGO sets, wooden Lincoln Logs, blocks, a box of flocked horses, jacks, marbles, a traveling backgammon board that I thought we had lost, a magnetic Scrabble game, jigsaw puzzles and the like. The rest of the old board games, baby puzzles and toys, we donated to a city neighborhood center. The spare office chair went to Goodwill. We pulled together family videotapes to digitize on DVDs. I wound balls of yarn from half-finished knitting projects to bring to my weaving class.

So, we made progress. But there is still a lot more to do. And it’s dusty down there. It took me at least a day to feel like my lungs were clear. I may just have to hire some help to get that under control before we excavate some more.

We are fortunate, I know, to have had the resources to acquire all this stuff over the years—and a home to fill. But the older I get, the less I want to keep. The most precious finds in our family room didn’t take much space at all: a few loose photographs of family events long forgotten, memories of the tapes we used to watch together when the girls were young, a little wooden toy village small enough to fit in a matchbox that had once been my mother’s.

Ultimately, the best way for me to preserve what I really care about, in the least space, with no cleaning or dusting or other maintenance required, is simply to write about it. Thank goodness, I can still rely on my hands for that.

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: Griszka Niewiadomski

Thumb’s Up

· · Leave a Comment

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

· · 2 Comments

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

· · 2 Comments

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.