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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Thawing

Evelyn Herwitz · March 10, 2015 · 2 Comments

Winter’s grip is at long last loosening. The icy ruts on our street mostly melted as temperatures rose into the 40s on Monday. The sun shone all day. Snow drifts are slowly, slowly shrinking. Buds are visible on the Callery pear in our front yard.

And somewhere under all that snow, I’m sure there are crocuses waiting for the sun to warm the frozen earth just enough for their tender leaves to push up and free.

Hard as it is for my internal clock to adjust to that first Sunday when we jump forward to Daylight Savings Time, it’s a delight to have the days feel longer again (even as I know it’s just an artificial shift in how we perceive when the day begins and ends).

March can be a deceptive month here in New England, promising spring and then dashing hopes with a late snow storm. But I’m feeling optimistic. According to the weather reports, the Jet Stream has finally moved farther north, which means we’re in for an easier, sunnier spell.

We’re certainly due after all that record-breaking snow and cold. My hands have taken a beating this winter. I’m finally weaning myself off a long round of antibiotics to clear up two infected ulcers, and I have five fingers swaddled in bandages as intransigent ulcers gradually heal. Spring can actually be my toughest season, though, so I’m hoping these will continue to improve.

Even still, there’s just something about seeing the promise of new leaves on the trees and watching water bubbles slide beneath the icy crusts along the street that I find reassuring. No matter how bitter the winter we’ve endured, the snow will melt, the temperatures will warm and the world will turn green once again.

I’m looking forward to wearing something other than the same sweaters, in varying combinations, and foregoing multiple layers—leg warmers, wrist warmers, two or three tops, wool pants, neck scarf, down coat, outer scarf, wool hat, insulated gloves, boots (have I forgotten anything?)—every time I go out the door. As it is, two of my good cashmere v-necks, which I’ve had for years, finally wore out with holes at the elbows. Maybe I’ll figure out a way to shorten the sleeves.

Most of all, I’m looking forward to walking outside with my coat open and a warm breeze on my neck and the sun warming my face.

Spring officially arrives a week from Friday. Oh, yes, I’m ready.

Photo Credit: dsearls 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: body-mind balance, coping with winter, dressing for winter, finger ulcers, how to stay warm, Raynaud's, resilience

A Little Night Music

Evelyn Herwitz · February 24, 2015 · Leave a Comment

It’s really cold here, nine degrees on Monday night. Our street is a sheet of ice following a relatively warm day on Sunday—above freezing, WOW—when the snow that fell overnight melted and then refroze as temperatures dropped.

photoBut Saturday night, despite more snow, Al and I made it to a concert of Latin chamber music at Clark University performed by the Worcester Chamber Music Society, featuring Argentine guest soloist JP Jofre, a world class artist on the bandoneón, a type of concertina.

There is no better antidote to yet more snow than hearing the tango on the bandoneón.

When we got home, I decided to take a walk around the block. It was snowing gently, and the temperatures were just below freezing, so it felt relatively mild, even for me. The fresh snow coated all the dirty drifts that have narrowed our roads to nearly one way and freshened the landscape, transforming tree boughs to white lace.

I had the street all to myself. It was quiet and peaceful. Ginger would have loved it.

This winter will eventually come to an end. A week from Sunday, March 8, we switch to Daylight Savings Time and it will be lighter in the evening. The snow will melt (maybe by June).

So, to nudge things along and give you a little break from your own winter doldrums, here’s a video of Jofre performing Ástor Piazzolla’s Escualo with the JP Jofre Hard Tango Chamber Band at NYC’s Le Poisson Rouge in September, 2012. Tango, anyone?

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, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, mindfulness, resilience, winter

A Dog’s Life

Evelyn Herwitz · February 17, 2015 · 18 Comments

Last week, on Friday the 13th, we lost our wonderful Ginger. At 16 ½, she had outlived the average Golden Retriever by almost five years. But still, her end came too soon.

It all started when Mindi wrote a grade school report about Goldens. After our first dog died in 1998, she was adamant that if we ever got another, it had to be this breed. About a year later, we began our search, and in October of 2000, we learned of a family that was looking to sell a two-year old, pedigreed Golden.

As Al arrived at the owners’ home, he noticed an electric company truck in their drive. It turned out that the family was behind in their utility payments and about to have their power shut off. So he went to the bank, withdrew $200 to pay their bill and got Ginger in exchange. She jumped in his car and never looked back. That afternoon, Al greeted Mindi and Emily after school with Ginger in tow. At first, they thought he was just holding her for another parent. Needless to say, they were ecstatic to learn she was our new pet.

Neglected by her owners, ten pounds underweight, loaded with fleas (we soon discovered), never spayed, she needed a lot of love and attention. She took refuge under the kitchen table, and that’s where we placed her new bed. But she often liked to sleep on the hardwood floor, perhaps because that’s all she knew before coming to us.

At first, Ginger didn’t have quite enough energy to walk all the way around the block. But as she put on weight and gained strength, she gleamed and grinned. And, despite the former owners’ claim that she would swipe the baby’s meal, she never stole food.

In fact, she never stole anything that I can recall. She never climbed on the dining room table to snarf up a pound cake, like my childhood beagle, Snoopy, nor snatched socks and tissues, like our first dog, Sukki. She never snapped at us, only at dogs that got in her space. She only ran away once, chasing after a skunk on a frigid January night. When Al found her and brought her home, she reeked as she galloped around the house. I don’t recall how many baths it took to remove the scent.

Simply put, Ginger was just a love bug. Hugs and ear-scratches and snuggles were her ambrosia. She adored company and was totally oblivious to social cues from anyone who was skittish around dogs. Any resistance to her sweet face just encouraged her to persist until she got a pat on the head.

The squirrels always got away (thank goodness she never brought dead animals to our door), but she loved the woods. She would race back and forth between Al and me as we hiked, making sure we were both there, then wander a ways to sniff and explore. Her fur, such a beautiful russet, always blended with the fall foliage.

For the past five years, after I was laid off and began my consultancy at home, she was my constant companion. By this time in her life, she had mellowed considerably and was content to sleep, curled up under my desk or next to me in my office as I worked. But come 2:30 in the afternoon, somehow her internal clock would always go off and she would rise to nudge me for a walk, often nosing my hands off the keyboard to get me going. A good thing, for both of us. Those walks always cleared my head and gave us quality time together. I even finally taught her how to heel and not chase other dogs that passed us. Who says you can’t teach an old dog new tricks?

Most of all, she was a loving, comforting presence. We had our own way of communicating. She would let me know what she needed by pacing to and from the desired object—her water bowl, the back door, the kitchen to remind me it was time for pills (in ricotta cheese, of course), the back door again. Whenever I came home, she would always be there to greet me. And whenever I offered a walk, she was ready to go. On Shabbat afternoons, she would curl up nearby while I napped on the couch, and, sometimes, she could still climb up to cuddle next to me.

A hardy girl, she was beloved by her vet, who called Ginger her favorite Golden and always remarked on how she still had such “pep in her step.” But by last year, she was finally beginning to show her age. Arthritis, thyroid issues, weakened sight, loss of hearing in her right ear, lessened smell, confusion—all took their toll. Two weeks ago, she began to have trouble keeping down any food, and after a blood panel, we learned that her liver was failing. I thought she was rallying with medication and new bland food that she loved, but that was wishful thinking.

On Friday, I was writing at the kitchen table before going to the vet for some more anti-nausea meds. I got up to put on my coat and began telling her I’d be back soon, thinking I had let her back inside from her morning rituals, only to realize she wasn’t there. I called for her and looked all over the house, upstairs, the basement, out back, out front, in a total panic. It was as if she had vanished. Finally I clambered through the deep snow in the back yard, following the path she’d carved for herself in the drifts, and found her, collapsed. She was hemorrhaging. Blood stained the snow by her muzzle.

I stumbled back through the snow to get her a blanket, then called Al in hysterics. Thank goodness he could come home from work, because there was no way I could lift her and my fingers were going painfully numb in the frigid weather. He carried her to the car and we took her to the vet, but we knew it was over. She died, peacefully, in loving hands.

Of all the things I learned from Ginger, here’s what I will remember most: Live each moment fully. Be sure to take a nice, long stretch when you wake up. Ask for what you need. Find the good in everyone. And remember that whatever is troubling you, love is the strongest force in the Universe.

Rest in peace, Ginger. You are forever in our hearts.

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: body-mind balance, hands, Raynaud's, resilience

Into White

Evelyn Herwitz · February 3, 2015 · 4 Comments

This is quickly turning into a record-breaking winter here in Massachusetts. On Monday, Ground Hog Day, we got another foot-plus of snow on top of our record nearly three feet from last week. And it looks like there’s more to come.

I feel like I’m stuck in an endless loop of snow storms.

It wouldn’t be so bad if I didn’t feel so confined by the mounds of white stuff. I can’t shovel, and I can’t use a snow blower, even if we had one. I simply can’t stay out in the cold that long, and the temperatures are sinking into the single digits, with sub-zero wind-chill.

The (thankfully) warm but dry air in our home is wreaking havoc on my digital ulcers—up to eight on as many fingers. I’ve been on antibiotics for more than two weeks, now, as two messy ulcers slowly clear. Last week, I ordered a shipment of 1500 bandages (that’s 15 boxes of 100 each), but I’m now wondering if they will arrive before I finish my last box, given all the snow and inevitable delays.

All of this prompted me to do some research about long-term weather forecasts. Not that it will make any difference.

It doesn’t look good for February.

According to meteorologists who follow world-wide weather patterns, at least two factors on the other side of the globe are controlling our snow fall and temperatures here in New England:

  • A pool of warm water that started off around Hawaii three years ago and migrated to the Gulf of Alaska is now gradually shifting into the extreme eastern Pacific. This pumps warm air up into the atmosphere (if I understand this correctly), which then forces arctic air down across Canada and into the U.S.
  • Then there’s the amount of snowfall over Siberia. Apparently, there was a lot more snow cover in that part of the world than normal last October—more than an additional million square kilometers—and that affects the amount of snow we get in this part of the world, right around this time of year.   

There’s a lot more to it than that, but I won’t even attempt to summarize, especially if you don’t share my weather geekiness. Basically, it all comes down to physics, and the fact that our lives and circumstances are much more intertwined around this planet than we realize.

Bottom line: Our average annual snowfall here in Central Massachusetts is 64 inches. We’re now up to 57 inches, just in the past 10 days. And we’re supposed to get more snow on Thursday and again on Sunday to Monday.

A part of me wants to scream and head someplace sunny and mild (assuming I could actually get a flight despite all the snow). But this is New England, and we’re supposed to be hardy. So I will do my best. I will take necessary safety precautions and try to enjoy the journey into white. And I will continue to remind myself that—long range forecasts notwithstanding—the most important lesson from a winter like this is that control is an illusion. The only thing we can manage is the moment we’re living in, one snowflake at a time.

 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: body-mind balance, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

Fitness and Starts

Evelyn Herwitz · January 20, 2015 · Leave a Comment

It’s official. I’m fit. Well, sort of.

In keeping with my New Year’s resolutions, I decided to shake up my exercise routine, which had dwindled to a Pilates reformer class once a week plus morning stretches, and joined a local health and fitness center last week. As part of my new membership, I took a mini-fitness test, to determine my baseline.

After about a half-hour of various activities, including taking my blood pressure, recording my weight, measuring body fat, testing my strength and flexibility, and walking the treadmill, plus running all the results through a complicated formula, it was determined that I’m in pretty good shape, overall.

Not bad for a 60-year-old woman who’s had scleroderma half her life.

Now for the qualifications. Resting heart rate, aerobic fitness and blood pressure are all in the fit-to-excellent range. This came as a huge relief, because I do face some real challenges if I have to accelerate rapidly from 0 to 60, related to exercise-induced pulmonary hypertension. I’ve had some pretty frightening episodes of running to catch trains over the past couple of years that left me struggling for breath. One of my top priorities is to improve my aerobic fitness as well as determine my limits, so I can make better decisions about when I can push myself and when I can’t.

What I need to work on most, not surprisingly, are building up my strength and improving flexibility. (No, that’s definitely not me in the photo. Just wishful thinking.) And the old body-fat-to-muscle ratio could use some work, too, even though I’m on the thin side. Nothing like menopause to make all your body fat sink into your hips and thighs.

So, now the question is, what exercises to do to get stronger and regain whatever flexibility is possible? With the help of fitness center staff, I went through all the equipment and figured out what my routine should be. The center director, after reading up on scleroderma, reviewed classes with me and made recommendations. The next day, I tried out a group class that was a mix of yoga and Pilates, set to music. Over the weekend, I recovered.

The big advantage of this arrangement is that I can go to the gym whenever I want to work out, and most of the classes I’m interested in are in the late morning—well-suited to my work-at-home arrangement and very appealing in the winter, when going out at night seems overwhelming because of the cold.

The flip-side disadvantage is that I no longer have a set class schedule—so I have to be sure to plan ahead and make an appointment with myself to go exercise.

Despite muscle fatigue and some tender joints by week’s end, I did notice three major plusses:

  • The treadmill workout woke up my brain. I really felt much more clear-headed afterwards.
  • I slept better after I exercised. I’ve always noticed this, but it was quite striking after both days of visiting the gym.
  • I had more spring in my step. This was also surprising.

All encouraging signs, enough to keep motivated as I figure out what I really enjoy the most. As one of my rheumatologists once told me years ago, exercise is essential to my health and well being, but I need to find something I really love, in order to stick with it.

For someone who used to hate gym class in high school, I guess I’m making progress. It’s about time.

Photo Credit: QuinnDombrowski 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, Touch Tagged With: body-mind balance, exercise, managing chronic disease, 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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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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