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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Mind

Too Cold for Comfort

Evelyn Herwitz · January 22, 2019 · 1 Comment

It was bone-chilling cold here on Monday, zero degrees Fahrenheit following our first real snowfall of the season. Our street was plowed but remains covered with icy snowpack. Not my kind of weather.

But I had a follow-up medical appointment in the late morning, so I dressed in my warmest layers and set out, figuring that I would park in the garage and only be exposed to the elements for a brief few minutes.

When I arrived on time for my appointment, however, I was in for a much ruder shock than frigid air. The woman behind the desk asked me for my insurance card and ran it through the system. Then she informed me that our policy was inactive.

What??? She said she’d tried running it several times that morning and gotten the same status. She even called our health insurance provider to double-check, while I stood there, heart pounding. Same response.

Did I want to pay out of pocket for the visit? No. It could wait. My new objective was to get home and figure out what was going on.

A little background. Just over a year ago, Al lost his job at the hospital. He has since found a new job that he is really enjoying, thank goodness, helping people with intellectual disabilities live independently. However, his new employer does not offer great health benefits, and given my complex needs, we made the expensive decision to stay with our existing coverage via COBRA, while we wait until I’m eligible for Medicare, now just a few months away.

Back in November, we received a notice that we needed to re-up our enrollment in our health insurance for 2019. Al took care of the details, we continued to pay our monthly premium, and received confirming paperwork that all was well.

Apparently, however, as I discovered when I got home and made some frantic phone calls to both our health insurance plan and COBRA benefits manager, the COBRA people had failed to notify our insurance plan that we were still enrolled.

Just a minor oversight.

They assured me that any medical care we’d received so far in January would be covered retroactively once that notification slunk through the mail from Party A to Party B. This herculean feat should be accomplished sometime later this week.

Certainly, I was hugely relieved when I hung up the phone (and my blood pressure returned to normal). But for the drive home on slippery pavement and the half-hour it took me to get through to the right parties and ascertain that we had not be kicked off our plan, I was desperately trying not to freak out.

For something so essential, it just shouldn’t be this easy for anyone to lose health insurance coverage. I’m lucky. I know it. We have the financial resources to cover our medical insurance costs, even under COBRA, to wait out the transition to Medicare (which, thank goodness, still exists).

But a lost job, a missed enrollment notice, a missed insurance payment, a bureaucratic snafu can leave anyone so vulnerable, especially anyone with serious health issues. This is not a new or revelatory observation. It just hit me like a brick of ice on a very, very cold day.

Our nation needs to fix this. We must.

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: Nathan Wolfe

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Filed Under: Body, Hearing, Mind, Sight

Grand Entrance

Evelyn Herwitz · January 15, 2019 · 4 Comments

Almost every Wednesday night, I take a break from writing and join friends at a nearby weaving studio. It’s kind of like an old-fashioned quilting bee, sharing stories as we work on our individual looms, creating Saori textiles, a form of Japanese freestyle weaving. It’s meditative and relaxing and a good reminder that beauty is everywhere around us.

Just one problem: I have a backlog of woven pieces at home, waiting for me complete them. For months, my colorful textiles have been lying in a pile on one of our dining room chairs, taunting me.

“When are you going to get around to us?” they seem to ask. “You were so enthusiastic when you took us off the loom. What gives? Don’t you care anymore?”

Well, yes, but there’s been so much else to do.

“No excuse! Your hands have healed. You can do this!”

One piece, in particular, has waited nearly eight months for me to complete⎯a bright, multicolored textile to replace the tattered curtain on our kitchen door. Last spring I had come close to completing it, machine sewing a yellow cotton border to the sides. Then, in a rush to finish (always a bad idea), I had flipped over the top edge to make a channel for the curtain rod, but stitched the fringed edge to the back instead of the front.

Picking out all those stitches was more than I could handle. I also realized that, even with the yellow border, the piece was still too narrow to cover the kitchen window. Discouraged, I put it aside and didn’t touch it again until my younger daughter came home for a visit over the December holidays and, with her very nimble fingers, took out the stitches for me.

Buoyed by this fix, I bought some turquoise cotton fabric to extend the edges. And this weekend, I finished the curtain, with the help of a new iron (I’d dropped my old one and broken it sometime over the summer), a more accessible storage solution for my ironing board (no more dragging it up from the basement) and some fusible sewing tape that enabled me to avoid using pins, which I find quite difficult to manipulate.

Persistence paid off. The result makes me smile. And it’s a cheerful reminder that, despite last year’s major hand surgery and months of healing, I can still make something beautiful.

Before . . .
. . . and after!

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.

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Filed Under: Body, Mind, Sight, Touch

In Praise of Chocolate

Evelyn Herwitz · January 8, 2019 · Leave a Comment

It’s getting colder out. On Sunday, snow swirled down from the skies when it was supposed to be sunny. Monday we started off in the teens and never got above low twenties. Snow is predicted for Tuesday morning.

I find myself craving chocolate. Not milk chocolate or white chocolate, but serious, bitter-sweet, dark chocolate. Fortunately, Al must have read my mind, because he bought a bag of dark chocolate bark when he went grocery shopping on Sunday afternoon. God bless him.

Dark chocolate is good for you. I know this because the Harvard School of Public Health says so. The flavanols in cocoa help to lower blood pressure, which makes consumption of dark chocolate, which is rich in flavanols, essential these days, given all of the crazy, distressing news. Dark chocolate can also reduce risk of diabetes and heart disease. I’m all for that.

When I was a marketing director at a small New England college, I always had a bowl of dark chocolate sitting out in the department’s open office space. My staff loved it. So did our colleagues, who would come to visit and snag a few pieces. Chocolate makes people happy. It brings us together. Also a good thing at a time of such divisiveness.

Too much of a good thing, of course, can become a problem. If I eat more than I should, the caffeine in dark chocolate can trip my heart arrhythmia. While that’s pretty annoying, it’s also a built-in warning signal that prevents me from gorging and gaining weight from the stuff.

So, I’ll try not to devour that bag that Al bought before the week is out. A piece a day⎯maybe two⎯should ward off the cold and keep my blood pressure in check as the temperatures drop and the news roars on. Just as a preventative, of course.

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: Charisse Kenion

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Filed Under: Body, Hearing, Mind, Smell, Taste

Clean Slate

Evelyn Herwitz · January 1, 2019 · 2 Comments

What is it about the change of one digit in the enumeration of years that makes January 1 feel different?

I’ve been rereading my bullet journals for 2018, notes from our travels, lists of books I’ve read (the only way I can remember is to write them down) and films I’ve seen, other flotsam and jetsam that contain clues about how I spent the past year. If I didn’t keep such copious records, it would all be a blur.

I go through this ritual twice a year⎯in the fall, for the Jewish High Holidays, with a spiritual focus, and in December, when I reflect on my work and creative goals and priorities for the coming year. It always feels good to take that step back and appreciate the good, learn from the mistakes, and decide what’s most important moving forward.

But why at the year’s turn? Or rather, why only at the year’s turn? New Year’s is truly just another day, another turn of the Earth on its orbit around the Sun.

It’s all too easy to get swamped by the details and challenges that each day brings. But I try to remind myself as I write this, a daily pause to reflect can make each sunrise feel like a clean slate. What am I grateful for? What do I want to accomplish today? What worked? What didn’t? What can I learn from the experience? Sounds like a plan, regardless of the calendar.

And so, Dear Reader, I share that resolution with you, as well as best wishes for a healthy, fulfilling 2019⎯every day of the New Year.

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: Ian Schneider

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Filed Under: Body, Mind

Winter Song

Evelyn Herwitz · December 18, 2018 · 6 Comments

Many public schools around the country are struggling for lack of resources, and the schools in our city are no exception. But that hasn’t stopped a thriving music program in one of our high schools from training some talented musicians.

Back in May, I wrote about Al and my decision to donate my grandfather’s violin and his father’s viola to our local public school system. I haven’t been able to play the violin for decades as my hands have deteriorated. We hoped that the instruments would enable some deserving students to develop their skills. This past Thursday, those hopes were realized, as we got to see and hear our instruments making music once again

It was the annual Winter Concert at our local arts magnet high school, performed in the auditorium of the next-door middle school. I had never been there before, but we had been invited by the program’s director to attend in thanks for our donation. 

The building is drab, the auditorium cavernous, with wooden folding seats, a mediocre sound system and an aging grand piano that snapped a string during vigorous playing by the choral director. But the program was full of challenging selections, ranging from Bartók to Sondheim. And the students largely rose to the challenge. 

Most impressive was the string orchestra. Their director, who commutes from Boston, has clearly taught the students well.  It gave me such pleasure to watch and listen. All the violinists sat up straight, bowed their strings with excellent form and made lovely music. Our instruments sang again.

Equally as important to me, the string orchestra director treated his students and the concert with respect. He dressed smartly in a tuxedo with a red bow tie and cummerbund for the occasion. He had engaged a wonderful professional opera singer, clad in a scarlet gown, to perform Mozart with the group. The students presented her with a bouquet. There was shared pride in all that they had accomplished together.

We left the concert, which included band, choral and orchestra performances as well, feeling really good. Against significant odds, committed teachers are helping dedicated students rise to their full potential. I’m glad that our instruments have found a good new home.

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: Peter Lewis

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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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