Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Soundscape

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As I was lying on an exam bed Monday morning, during a routine echocardiogram, I was thinking about sounds. Not just the sounds as the tech pressed the ultrasound probe to my chest and took photos—beep—typed—clackety-clunk-clackety-clackety-clunk—and played audio of my heart beat—woah-wacka-woah-wacka-woah. That alone was quite the medley.

I was also listening to the sounds of the Boston Medical office building—the whoosh of air through metal ducts in the ceiling, the padding and occasional squeak of rubber-soled shoes along the corridor, someone’s cell-phone ringing, muted conversations among the medical staff.

Medical offices have a very distinctive soundscape. Especially offices that are tied to hospitals. There is a certain muffled white noise that permeates the space, some combination of the type of linoleum and carpeting, sound-absorbing tiles on high ceilings, the cushioned shoes, the air ducts. Conversations ebb and flow around corners and through walls of exam room warrens. You can hear personal details that you shouldn’t. You can sense the tension in sotto voce murmurs.

In waiting rooms, I’ve decided there are basically two kinds of people: those who respect the presence of others and keep their voices down, and those who think they’re in their own living rooms and yell on their phones or play loud videos or music without wearing earphones. Some waiting rooms post signs that cell phones are not allowed. Some places enforce those rules. Others don’t. I have yet to determine a pattern of which kinds of doctor’s waiting rooms are more likely to be quiet or noisy. It would be an interesting subject for research.

All I know is if you dropped me blindfolded into a medical office building, I would know where I was immediately, just by the sounds. Which also means I’ve spent way too much time in medical office buildings.

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: Pawel Czerwinski

On Getting Older

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In just over a month, I will turn 70. That number doesn’t feel so old to me anymore. In fact, it feels about right.

There’s an old saying that you’re as young as you feel. Can’t say I feel young—at least, not physically. My body has been aging prematurely since I developed scleroderma in my late twenties. In some ways, I don’t really know what it’s like to be thirty or forty, or even fifty, since I was always ahead of the aging curve. I’ve been living for decades with aches and stiffness and body parts that don’t work and a sense of physical vulnerability that normally wouldn’t arise until late middle age. I used to envy friends who were healthy and energetic when I couldn’t be. I wondered what that would feel like.

Not anymore. Everyone’s caught up. Meanwhile, my decades of experience with premature aging have made the onset of the normal range of physical limitation that come with this time of life just another blip. Aches and pains when I wake up or rise after sitting for a while. Check. Need to manage my energy. Check. Lots of specialists appointments. Check. Need to manage multiple meds. Check. Harder to walk than before. Check. Eyes too dry and tire more easily. Check. Hands giving me problems, hips, feet, knees. Check, check, check, check.

It adds up, and I certainly understand how distressing it is when all this starts to happen, whatever your age. But I never expected scleroderma to give me an advantage. It has forced me to learn how to pay attention to what ails me, problem solve, adapt, get proper medical attention, manage my health care, and most importantly, focus on what I can do rather than on what I can’t. After forty-plus years of living with it all, turning 70 doesn’t really seem like a big deal.

In fact, it feels like an accomplishment. And I’m looking forward to it.

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: Volodymyr Hryshchenko

 

The Pits

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Over the weekend, I pulled yet another calcium pit out of the inside joint of my right thumb. It is the third tiny shard that has emerged in the past month-plus. And although I’m not certain, it feels like another one is surfacing.

This makes grasping objects complicated. These tiny charcoal-gray bits of calcium are quite sharp. The slightest pressure, as they work their way out of my skin, is quite painful. And there is nothing to be done but wait until enough is showing that I can grasp it with a pair of tweezers. Not a fun procedure.

Several years ago, I discussed this with my hand surgeon. We looked at X-rays that revealed chains of calcium pits in each of my thumbs that run the length of both digits. He advised against trying to remove them, because of the collateral damage it would cause, but offered to extract one if it became too painful and difficult for my to deal with on my own. The one time I actually scheduled an appointment with him, the offender popped out on its own, which was a relief.

This whole issue is complicated by the fact that I can’t turn my hand around enough to see the opening in my thumb. Not enough rotation in my wrist. So I rely on a mirror, but that’s tricky, too.

No one knows know why these calcium deposits form in scleroderma. There is at present no treatment, only remedial steps to ease the discomfort. According to the Scleroderma Research Foundation, increased blood flow to extremities may help, and lesions may respond to antacids, bisphosphonates, or calcium channel-blockers. But there is no cure.

So, my main goal is to protect my thumb as best I can and keep it clean to avoid an infection. As I type, I am experimenting with wrapping my bandaged thumb in Coban, which is a self-adhering mesh tape that provides some extra padding. Not sure if it’s helping the hole in my thumb, but it feels a bit better when I strike the space bar on my computer—a good thing, because calcinosis often forms at pressure points, and I think another spot may be forming where my thumb hits the keyboard.

Basically, it’s a damn nuisance. Nothing to do but wait it out.

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.

Act One

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Another Nor’easter on the way in Massachusetts, with up to a foot of snow expected here by the end of Tuesday. As long as we retain power, I’m not concerned. I just wish it would come on a different weekday. Twice we’ve had heavy snowfall on a Tuesday, which means I can’t go to my acting class in the evening.

Yes, I have started taking acting lessons this winter. I had been thinking about this for at least a year. There is a conservatory associated with a local theater in our city, and they offer all kinds of lessons in the performing arts for children, teens, and adults. Why acting? My main motivation is a desire to be able to sink more deeply into the characters I create for my fiction. Acting lessons seem like a fruitful way to get there. But I also have long wondered what it would be like to act in a play as an adult.

The last time I was on stage was in the sixth grade. Our elementary school principal set a high standard for the annual spring festival. Performances included versions of Mozart’s The Magic Flute, Gilbert and Sullivan’s The Mikado, and Puccini’s Gianni Schicchi. The dialogue of these operas was both spoken and sung, all in English, and plots simplified. Parts were reserved for the fifth and sixth graders, and my older sister starred in both The Magic Flute and The Mikado. Costumes were designed for these two productions by our principal’s friends in the New York City theater world, and they were spectacular.

By the time I was in sixth grade, budget constraints had put the kibosh on those wonderful garments, and moms were assigned the role of seamstresses. The production that year was Prokofiev’s The Love for Three Oranges. I landed the role of the evil Princess Clarice, who plots to kill the prince so she can succeed him on the throne. The one line that I recall singing was, “Poison, or a bullet!” My sister coached me in a dramatic delivery.

In high school, I was never able to get a part in any of the school plays. The drama kids were a tight clique, and I did not fit in. So I gave up.

Until now.

I’m in no hurry to act on a stage, but I am gaining courage from the two classes we’ve had so far, to play “acting games” with and in front of my classmates. There are eight of us, four men and four women, plus our talented instructor. I’m the oldest, and the youngest is probably in his mid- to late-twenties. Two of the guys have acted in community theater and want to get training that they’ve never received. The rest of us are all newbies, pushing out of our comfort zones. Everyone is enthusiastic and has a great sense of humor.

The games vary from “Two Truths and Lie” to more complicated assignments. At our first class, for example, one person came to the center of the studio and sang a song, to be replaced by two other people who improvised a scene based on that song, to be replaced by another person who sang a song based on that scene, and so on, until we got back to the original song. It was hilarious.

We’ll continue with these games for a few more weeks, and then we’ll each learn a one-to-two-minute monologue of our own choosing, with coaching from our instructor. The class goes through the middle of May.

I have left both classes feeling totally energized, my brain swirling with ideas. I’ve also surprised myself that I have not felt too self-conscious or hesitant to put myself out there. This has been revelatory for someone who has long been more of an introvert. For many years, having scleroderma also caused me to be more sensitive about drawing attention. That, I am glad to report, has eased considerably, especially in the 12 years that I have been writing this blog.

As for an impact on my fiction writing, that will be a longer process. But in the meantime, classes are a hoot, a boost, and a reminder that you’re never too old to try something new—or something you wish you’d always done.

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: Gwen King

In Praise of Sleep

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I cannot function without a good night’s sleep. Or, rather, I can function, but I’ll feel awful, like I’m moving through sludge.

Most nights, I sleep uninterrupted and feel refreshed in the morning, although it depends on the more-often-than-I-would-like trips to the bathroom at some point around 4:00 or 5:00—a matter of age, and if I drank too much fluid in the evening.

How I feel in the morning also depends on whether an alarm wakes me in the middle of a dream. If that’s the case, it will take me longer to orient myself and get going (which is a long process, anyway, given hand-care and eye care and stretching exercises and the time it takes to get dressed). It also depends on how weird the dream is. And I have weird dreams.

I wake up most refreshed without an alarm, when daylight filters through the bedroom shades. That’s how we’re supposed to be, I suppose. Given that I’m an owl, not a lark, I often don’t get to sleep before midnight. Daylight around 7:00 arrives at just the right time for a seven-hour night. That’s also when the heat comes up in our home, which at this time of year is essential for me to get myself out of bed.

There’s plenty of research that explains why sleep is so important to each of us—for physical and mental well-being, absorbing and processing new information, retaining memory, paying attention. Especially for those of us living with chronic medical conditions, sleep is essential for healing and staying as healthy as possible.

There’s also plenty of good advice about sleep hygiene, how to create the conditions to help you get a good night’s sleep. For me, most nights, getting to sleep is not a problem, so long as I haven’t eaten too close to bedtime, have turned off the news before I’m ready to turn in (absolute necessity), and have a good book to read until I start yawning so much I can’t read anymore. Getting to sleep is easiest if I’ve exercised during the day, especially walking outside in fresh air.

On those nights when sleep eludes me, or I can’t get back to sleep after an interruption, I’ll start ruminating. Listening to a meditation sleep-cast usually, but not always, does the trick. But even if I can’t go back to sleep,  I try to stay in bed and count backwards from 100 or try to recall all the state capitals, just to rest my joints if not my brain.

And if all else fails, and I’m dragging during the day (more true in cold weather, which makes me want to hibernate), I’ll lie down and take a 20-minute rest or power nap to rejuvinate. This is most likely to happen around 2:30 in the afternoon, the low point in my daytime circadian cycle.

When I do need that break, I am very grateful that I work for myself at home.

And so, Dear Reader, here’s to a good night’s sleep on a regular basis for us all. Be well.

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: Cris Sauer