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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Body

Weighing In

Evelyn Herwitz · February 18, 2014 · Leave a Comment

Glow little glow worm, glimmer, glimmer,
Someone’s getting thinner, thinner . . .

I’ve been losing weight. This is not intentional. Much as I’ve disliked the extra pounds I gained once I hit menopause about five years ago, all of which settled in my waist and hips, I’m still on the thin side.

A few weeks ago, I noticed that I could button a pair of old wool pants that had been too tight for years. Suddenly, they fit again. At first, I was delighted. Then I weighed myself and realized I’d dropped at least four pounds since the last time I had checked, maybe a month or so prior, and about eight pounds since last summer.

I mentioned this to my Boston Medical Center rheumatologist at a recent check-up. He said I didn’t show any evidence of an overactive thyroid—Graves’ Disease—which, among other things, makes you feel hot all the time. Certainly not the case. “Let’s keep an eye on it,” he counseled.

Teeth are crooked and her hair’s peroxide,
In the moonlight, she looks cross-eyed . . . 

Another week-and-a-half passed. I checked my weight again one morning and realized I’d lost another pound. This scared me. I called my local internist’s office to get an appointment.

“I’m not sure why I’m losing weight,” I explained to the nurse who answered my call. “Maybe it’s because of the extreme cold and my Raynaud’s? Maybe I’m burning a lot of extra calories?”

“I sure wish that would happen to me!” she exclaimed.

I didn’t know how to respond, even as I was expecting her comment. When I was in the active phase of scleroderma, decades ago, I could not keep weight on. Everyone I knew was jealous. No one was sympathetic.

But the reality is, maintaining weight can be as difficult a challenge as losing weight when your metabolism is messed up. And being too thin, especially with this disease, only chisels your face to an extreme caricature—and makes it even harder to stay warm.

My adult weight has fluctuated over time, like anyone else’s, to a high of 140 when I was pregnant, and a low of just under 100 when I was in the active phase of scleroderma and also dealing with lactose intolerance. Hovering around the 100 pound mark, I had to drink supplements to bulk up. They made my head and teeth buzz when insulin released into my system, and I hated it.

I’m nowhere near that low, now, but when the scale dipped to 113 ( I’ve been around 121 for longer than I can remember), an orange flag waved in my mind.

Bells on her petticoat tinkle in the breeze,
High above her bow-legged knees . . .

My doc ordered comprehensive blood work and a thyroid panel and instructed me to keep track of my food intake until our appointment. I complied, and when the labs came back (my local medical group offers patient access to select electronic medical records), I was relieved that all the results were in the normal range.

I went to see him the following week. As we reviewed the details, he confirmed that the blood work was fine, no indication of scary possibilities, like cancer.

But the mystery remained. Why have I lost this weight? Maybe my extreme cold weather theory is correct. Maybe it has to do with subtle diet changes—I’ve subbed low fat yogurt for instant pudding to coat my stomach when I take Ibuprofin twice a day. Or maybe I’m developing some intestinal malabsorption issues with my scleroderma.

The only way to find out? More tests. He enumerated the delightful options: More blood work! Stool sample! CT scan of my belly! A colonoscopy! And what difference would the findings make? Not clear. We looked at each other and agreed: Wait and continue to monitor.

All the things that people say,
Couldn’t keep us away!

So, that’s what I’m doing. I’m not worried as I was, before. My weight has stabilized for now. I feel fine, except for the fact that this winter is just too damn cold. Even as an old, nasty childhood ditty (thinner, thinner) seems stuck in my head, I’m just letting it roll. There are much better ways to occupy my mind, and listening to Bizet’s Carmen Suite as I write is a great place to start.

Meanwhile, if I feel like eating that extra Oreo, no harm 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.

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Filed Under: Body, Mind Tagged With: managing chronic disease, Raynaud's, weight loss

Pharmacopia

Evelyn Herwitz · February 11, 2014 · 2 Comments

Lately, it seems, I’m running to the vet or the pharmacy every week or so to refill a prescription.

Ginger, our 15-and-a-half-year-old Golden Retriever, needs a steady supply of her chewable, yummy, liver-flavored pills for arthritis, plus her chewable, yummy, other-flavor pills to help her cognition (I could use some of these, too, for those ever-more-frequent senior moments), and another pill for her thyroid, and another med for her arthritis (which I just discovered comes in pill form, not yummy or chewable, but considerably cheaper than the liquid version), plus a stomach acid blocker.

For me, there are about a half-dozen prescriptions to manage at any one time, one from a specialty mail-order pharmacy that requires a monthly blood test, and others that run out on a staggered schedule and require my attention every couple of weeks or so. Plus some vitamin supplements and over-the-counter meds to round out the mix.

I’m sure there’s a more efficient way to keep track of all this and probably some cheaper alternatives for Ginger that I have yet to discover.

I need to check out substitutions for some of my own meds, as well. Recently my deductible on two different scrips jumped from $25 to $50. One of these is a monthly refill. It all adds up, quickly.

Even still, I’m blessed with good medical insurance through Al’s employer (at least, that is, until we find out what the new plan will be for next year, since the hospital where he is a social worker was recently bought out, once again). One of my prescriptions would cost nearly $5,000 a month without coverage. Very sobering. I think about this every time I take one of those little pills, which I need twice a day. I try to be very careful not to drop one.

When I rise and before bed, I line up one set of pills and swallow them with water. Then, after breakfast and dinner, Ginger and I take pills together. Despite her age, she is actually very good about reminding me if I get distracted, because for her, medicine is a big treat.

Not only are the chewables yummy, but she enjoys having her other pills with a little butter, plus a scoop of low-fat ricotta and a little bread or left-over challah, to be sure the arthritis meds don’t irritate her stomach. She will start pacing back and forth to nudge me if I miss the timing, which she seems to know by the amount of daylight or lack, thereof, and where we are in our daily routine of meals.

I do not look forward to taking my meds, nor to constantly running to refill prescriptions, nor to paying for it all. It is just one of those things that needs to happen on schedule.

But I think Ginger has the right attitude. In her world, every day is an adventure to be savored.

My meds certainly help me feel a lot better than I would without them. They are a nuisance to manage, a growing expense. But I am extremely grateful to have access to the drugs I need in order to stay as healthy as possible.

Now, if they could only come in chewable, yummy flavors.

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.

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Filed Under: Body, Mind, Sight, Taste Tagged With: body-mind balance, managing chronic disease, managing medications, resilience

Flying Lesson

Evelyn Herwitz · February 4, 2014 · 4 Comments

Last Thursday night, Al and I stayed up way too late watching a Batman movie. I was sitting on the bed, changing my bandages—a half-hour process these days, with so many finger ulcers—and he was relaxing, not yet asleep, but tired enough to skip channel surfing.

Somehow, we got hooked on Batman Begins, with Christian Bale as the Dark Knight. It wasn’t the plot—you know from the start how it will end. There were far too many commercials, and if we’d really wanted to watch the movie, we could have streamed it on Al’s computer with Netflix.

There was just something mesmerizing about the telling of the story, which revolves around Bruce Wayne’s struggle to overcome his childhood fears and the loss of his parents, and his quest to save Gotham City from the forces of evil.

I guess I’m a sucker for heroics, imagined and otherwise.

Plus, he could do all those neat tricks with zooming upside-down, snatching up the baddies from their lairs.

And he could fly.

When I was a kid, I used to wonder aloud what it would feel like to be a bird—to have wings and be able to soar around in the sky and land on a delicate branch, way up in a tree.

But much as I wondered about this, I was also afraid of heights. Sitting in a balcony at a theatre would make me anxious, that somehow I would fall over the edge. I was terrified of ferris wheels and roller coasters. When our family visited the top of the Empire State Building, I hugged the outer walls, not trusting the sturdy iron railings to hold (this was back in the day when the 102nd floor observatory was still open to the public).

So it was, nearly 20 years ago, when Al bought me a one-hour flying lesson at a synagogue fundraiser for my 40th birthday, that I thought he was out of his mind. I had certainly flown many miles in commercial airliners by then, but the idea of piloting a private plane was about the last thing I’d choose to do in my free time.

His inspiration for this gift was to give me a bird’s eye view of local landscape, to help my research for the book I was writing about the history of Worcester’s urban forest. I had been telling him all about regional geology and topography, my most recent fascination. I didn’t want to hurt his feelings, so I reluctantly accepted.

The day of my lesson that summer dawned sunny and clear. We met my instructor, a local DJ who went by the handle of Roger X, at the airfield, next to his yellow Cessna. He was jocular and confident, very reassuring as I nervously settled into the pilot’s seat, with him as co-pilot. Within minutes, we were taxiing for take-off. As we rose into the air, Roger let go of the dual controls. I was flying the plane on my own. I began to perspire.

Roger instructed me how to pull back gently on the controls to keep climbing. He told me that flying a plane was as safe as driving a car—the air pressure differential over and under the wings pushes you up. I knew this, I understood the physics, but my heart was slamming in my chest.

And yet. The view was spectacular. I had chosen to fly north, tracing the pattern of Central New England mountains. There were Wachusett, Monadnock, Tecumsah, plopped like dollops of pistachio ice cream, separated by many miles, but aligned. The glacial patterns I had researched suddenly made sense.

I banked the plane in a U-turn, following Roger’s calm instructions, and we headed back. He spoke to the control tower as we approached the airfield. He told me what to do, and to my total amazement, I landed the plane safely. I peeled my sweat-soaked shirt from the seat-back and climbed out on shaky legs.

Relaxing into Al’s congratulatory embrace, I thanked him. Sincerely. It had been, ultimately, exhilarating, one of the best birthday presents ever.

I haven’t flown a plane since (expensive hobby). But I still cherish the memory of that lesson. We each have our own reasons to be fearful, some grounded in stark reality and some imagined, but angst-producing, nonetheless.

When I get stuck, I try to remember: You never know what fears can be overcome, or what you’re capable of, until you try. Sometimes it just takes the push of the one who knows you best to get there. Especially when, in spite of yourself, you really do want to fly.

Photo Credit: Skyhawk4Life via Compfight cc

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, managing chronic disease, resilience

Flowers at an Exhibition

Evelyn Herwitz · January 28, 2014 · 2 Comments

Just when it seems like it can’t get any colder, just when the wind chill hits sub-zero, just when my fingers are covered with bandages for seven—count ’em—seven ulcers from too much dry heat and bitter temps, along comes the Worcester Art Museum‘s (WAM) annual Flora in Winter exhibit.

A-a-a-a-a-h-h-h!

For four days, the WAM is filled with the scent of roses and hyacinths and peonies and more, arranged by regional floral artists to interpret masterpieces of fine art. It’s a great scavenger hunt through the museum to find each display. Al and I had a wonderful time visiting this weekend, and I hope you enjoy this virtual show of a few of my favorites to brighten your own winter blues.

"Portrait of a Young Lady," att. Willem Key Flowers by Susan Detjens
“Portrait of a Young Lady,” attributed to Willem Key
Flowers by Susan Detjens

 

"Young Shepherd with Sheep and Goats" by Jan Baptist Weenix and Bartholomeus van der Helst Flowers by Young Farwell/Helen Blazis
“Young Shepherd with Sheep and Goats,” Jan Baptist Weenix and Bartholomeus van der Helst
Flowers by Young Farwell/Helen Blazis

 

"Chapel of the Virgin at Subiaco," Samuel Finlay  Breese Morse Flowers by Mary Fletcher
“Chapel of the Virgin at Subiaco,” Samuel Finlay Breese Morse
Flowers by Mary Fletcher

 

"Julie and Aristotle," Alice Neel Flowers by Sandra Tosches
“Julie and Aristotle,” Alice Neel
Flowers by Sandra Tosches

 

"The Sea Gull," Milton Avery Flowers by Robin Whitney
“The Sea Gull,” Milton Avery
Flowers by Robin Whitney

 

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.

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Filed Under: Body, Mind, Sight, Smell Tagged With: finger ulcers, resilience, Worcester Art Museum

Hamster Wheel

Evelyn Herwitz · January 21, 2014 · Leave a Comment

Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q via Compfight cc

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.

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Filed Under: Body, Mind, Taste, Touch Tagged With: hands, insomnia, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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Recent Posts

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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