Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

What We Take for Granted

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Early Monday morning I was awakened by what I thought, in my half-dream state, were raccoons or some other large critters running around on our roof and climbing in the gutters. Then I heard voices outside. I roused myself to look out the front window and discovered a row of city public works trucks outside, yellow lights blinking, and a backhoe with some kind of drill punching holes in the pavement in front of our neighbor’s driveway. Each punch made our house tremble.

Some mighty big raccoons!

The trucks were still there when the sun rose. Turns out a water main on our street had cracked open in this very frigid weather we’re enduring. So, no water for morning ablutions or anything else. Fortunately, Al had left a large plastic pitcher of water on the kitchen counter the night before, so I could use some to remove my bandages and wash my hands before re-dressing them, as well as water to rinse my eyelids, essential for my cleansing ritual for very dry eyes.

Within a few hours, a new pipe was installed and the crew began refilling the large open pit on the street. I went outside to thank them, because I’d learned from one of our neighbors that they’d been there all night. Not enough workers available to cover in shifts (another main had broken on a nearby thoroughfare the same night). The man I spoke with was very polite and informative, and he said our water would be back on soon.

Sure enough, within the hour, it flowed—gritty, at first, with a burst of trapped air, but running clear soon after.

The whole experience really struck me. It’s bad enough when power goes out in a storm. But losing water is truly disruptive. We’re so used to easy access. Just turn on the tap and fill your cup, wash the dishes, brush your teeth. Flush the toilet and, poof, your poop is gone.

It’s easy to criticize the city for a broken water main, for old infrastructure that hasn’t been updated, for all the inconvenience and disruption. But I am truly grateful to these guys for coming to our rescue in the middle of the night and staying the course in bitter cold to restore this most basic of needs. When I thanked the crew leader, he said, “It means a lot to hear that.” Another neighbor ran out and brought the crew a dozen doughnuts.

For all the disparaging remarks in casual chatter, on social media and elsewhere about government workers being lazy, corrupt, or otherwise deplorable, most are honest, hard working, and devoted to their jobs of making our lives easier. They truly deserve our respect and thanks.

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. Please view Privacy Policy here.

Image: Joshua Junior

Self Pep Talk

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It’s only December and it feels like January here in Massachusetts. Rolling up in a ball and hibernating sounds enticing. It’s hard to get myself out of the house, let alone out of bed in the morning. When I sit too long at my computer, I stiffen and need to rouse myself.

But I know that if I don’t get up and out, I’ll feel even worse. Moving is what keeps me moving, getting blood circulating in my brain and into my fingers and toes.

So, I kept a commitment on Friday morning, even as it was only single digits outside, to go with a friend to a special awards luncheon an hour’s drive from here for a project we’d worked on for our fair city. It was uplifting and fun and just an all-around good experience. On Saturday, I made myself walk, bundled up, to synagogue, and then later spent a pleasant afternoon studying texts with two good friends.

Then on Sunday, Al and I went to Hartford, Conn., to celebrate our 41st anniversary (which is actually today). Why Hartford, you ask, when Boston, with all of its cultural attractions, is just an hour away? Because there is a wonderful art museum there, the Wadsworth Atheneum. We also took in a ballet performance of The Enchanted Toy Shop by a local conservatory and had a really nice Italian dinner after. None of which cost anywhere near what Boston costs, and the street parking on weekends is free.

And, despite 21 degrees outside as I write on Monday afternoon, I’m about to head out to Pilates and to do some errands. And I have my acting class tonight at our local conservatory.

All of this reminds me, even as my instinct is just to burrow under the covers, that I really do better when I stay active—mentally, emotionally, spiritually. Being physical is a real challenge this time of year, but the more I move and keep stimulating my brain, the more those physical challenges seem manageable. As I keep telling myself.

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. Please view Privacy Policy here.

Image: Lydia Reclining on a Divan, c. 1882, possibly by Mary Cassatt, Wadsworth Atheneum

Touch Type

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As I was writing just now, I realized that I am typing with only my pinkies these days, with my thumbs handling the space bar. (Using an Apple keyboard makes this possible, because it requires only a very light touch.) Usually I also use my right ring finger, but it’s been out of commission for a few weeks due to another ulcer, which, of course, formed on a pressure point, as in where I touch the keys.

What’s so interesting about this is that I don’t actually notice, most of the time, how I’m typing. My hands have learned to adjust to various fingers being unavailable for so long that they “know” the distance between keys without my having to look (for the most part). Kinesthetic memory is a powerful sensory skill.

Many decades ago, when I could still play the violin, I could hear a piece of music and sense in my fingers how to play it—where each fingertip would land on the strings, which direction to ply the bow. I certainly can’t play Mendelssohn anymore, but sometimes I can still almost know, intuitively, how.

So, I guess I haven’t lost that skill. It’s just emerged in a different way. Pretty neat.

Our brains and bodies are quite amazing, even when they don’t work perfectly anymore.

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. Please view Privacy Policy here.

Image: Wayne Hollman

Open Wider, Please

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So, on Monday I made another long drive for a not-so-short appointment, this time to my dentist for the next step in my latest tooth saga, measuring my mouth for the crown for my implant. While I’m grateful that there is a way to keep saving my teeth as I keep losing them to scleroderma-induced root resorption, the process is long, uncomfortable, and not covered by insurance, so it’s no fun and incredibly expensive.

This visit was to make an impression of my teeth, so that the crown can fit properly. I believe the last time I had this done, a few years ago, they were still using that icky goop in a metal tray that they stuck in my mouth (no easy feat). I had to bite down and hold for a few minutes to create a mold. The process always reminded me of my childhood orthodontist’s office, with its shelves of plaster dentures from all of his clients’ mouths, eerily grinning.

Now, however, they can make a digital image of your teeth with a probe. No goop. But the probe is not small and my mouth opening, due to scleroderma, is not big. And as one tech, and then another, did her best to scan my teeth, each had to stretch my lips and cheeks to get the full impression, a definitely-no-fun experience. Finally that first set of images was completed, and I was able to rest my mouth.

Then came my dentist, who had to remove the small metal screw-in cap from the implant and then screw in some kind of post that determined the angle of the new crown. But he was having trouble unscrewing the cap and screwing in the post, because his finger are large and my mouth opening is small. Again, no fun, and he was stressed because he knew I was uncomfortable and didn’t want to hurt me. Finally that stage was finished, and I rested my mouth again.

But the next step was to scan the post with the probe, and first one tech, and then the next, could not get the full image that was required, despite a lot of lip and cheek stretching. They were discussing the possibility of falling back to the goop mold (after all that?!) when my dentist’s partner, a women with small, steady hands, a great sense of humor, and a boatload of patience, came to the rescue. Turns out the post was turned the wrong way, so that’s why the image wasn’t registering. She deftly repositioned it, redid the scan, took out the post, and replaced the cap in a fraction of the time the whole procedure had taken up to this point. “You’re a trooper!” she said, at the end.

If memory serves, she had to come in as the closer last time around, too. Sigh.

Before I left, I set up a payment plan and my next appointment. I’ll have my new tooth before New Year’s, and it will be paid for by my birthday in April. Al and I could have traveled around the world with all the money I’ve had to spend on implants in the past decade-plus. Here’s hoping everything fits, and that I can avoid this whole mishegas for another few years, until the inevitable next tooth bites the dust.

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. Please view Privacy Policy here.

Image: Jonathan Borba

What Happened to Your Hands?

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Recently, a young boy was studying my fingers. “Why do you have so many bandages?” he asked.

“I have problems with my hands,” I answered. For a pre-schooler, that seemed the appropriate explanation.

He looked concerned, or perhaps afraid. “You don’t have fingernails,” he said.

“No, I don’t,” I said. Not exactly true. I have a few left, but they certainly don’t look normal, more like moon crescents. He seemed perplexed, but then he got distracted and that was the end of our conversation.

A friend who overheard our chat checked to see how I took it. “Kids say what everyone else is thinking,” I said. “He’s just curious.”

It really doesn’t bother me anymore when people ask, after all these decades of living with odd-looking hands and way too many digital ulcers, especially since my hand surgery eight years ago that necessitated some partial finger amputations. Most people who know me don’t pay any attention to my hands. When a stranger (often a cashier or someone else I’m handing something to) asks, Oh, what happened to you? or clucks about my bandages, I just take it as a mix of natural inquisitiveness and compassion.

My standard answer is something like, “I have chronic ulcers.” I don’t bother to go into an explanation of scleroderma, because the occasion doesn’t call for a lengthy discussion, and I’d rather keep it simple. Sometimes the person will ask a follow-up, Does it hurt? To which I say, “Sometimes.”

I realize that such inquiries can be much more challenging for those with severely tightened skin. Before my skin relaxed somewhat on my face, hands, and forearms (a miracle, truly, as it was beginning to get uncomfortable to blink in the early years, and the skin on my hands was like leather), people who knew me casually would ask with concern whether I’d lost weight. They sensed something was different, but couldn’t figure out what.

I was very self-conscious during that first decade. When I began to see wrinkles in my forehead again after several years on penicillamine (a since-discredited treatment because research samples involved too few patients to prove a positive response, but I believe it saved my life), I was thrilled. But my hands were already deformed by then.

It wasn’t until I began writing this blog in January 2012 that I started to overcome all the embarrassment that I felt about my appearance. There really is so much more to living with a chronic, deforming disease like scleroderma than your looks or your diagnosis and treatments, although I don’t in any way mean to minimize the very real physical and emotional pain and stress of literally being trapped in your own skin, when scleroderma takes its most virulent form.

What I have learned in my nearly 45 years of managing this disease is that people take their cues from you. The more accepting you are of yourself, the more accepting they are of you. It’s a journey. I’m grateful to be sharing it with you.

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. Please view Privacy Policy here.

Image: Alex Skobe