• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

Hearing

If I Had a Billion Dollars

Evelyn Herwitz · January 12, 2016 · 2 Comments

Al and I were sitting at the dinner table Sunday night, finishing our meal of salad plus macaroni-cheese-and-tomato-sauce casserole. “The Power Ball is worth over a billion dollars,” he said ($1.4 billion, to be exact—but who’s counting).

rainbow-1393626-639x391“Really?” I said. “What would you do with a billion dollars? I mean, whatever was left after taxes?” (Even if it was less than half, that would still be a whole lot of money.)

We agreed that our first priority would be to pay off all debts—our mortgage, the equity line, the girls’ college and grad school loans. We’d make sure their futures were financially secure. And we agreed that our second priority would be to set up a charitable foundation.

“Who would you give the money to?” Al asked.

I began enumerating—certainly I’d donate to scleroderma research, also our favorite charities and our synagogue. I’d give a lot of money to climate change research, like how to desalinate sea water, alternative methods of farming during droughts, better ways to control coastal flooding. I’d fund interfaith dialogue and Middle East peace initiatives. Grants to fledgling artists and writers. For starters.

“What else?” he asked.

“Well, I’d fix up the house, do all the projects we’ve put off. Maybe I’d want to sell it and downsize.”

“Downsize? With all that money?”

“Sure. Then we could buy vacation places around the world. Except they’d be a lot of upkeep.” (So much for downsizing.)

“It wouldn’t matter,” said Al, caught up in the game. “We’d have enough to pay for a home on Block Island.”

“Okay, then we could also have an apartment in Tel Aviv and a place on the French Riviera. And I’d want to travel. First class. Go to Antarctica.” (I could certainly afford to buy whatever gear I needed to stay warm, there or here, for that matter.)

Al smiled. He began to clear the dishes.

I imagined buying custom-made shoes for my hard-to-please feet and any clothes I wanted.

“You could get a personal trainer,” he said, picking up my empty dinner plate.

“Yeah,” I said, “and I’d want to put aside enough money so we’d be able to afford in-home care, 24/7, for when we get older, so we’d never have to live in a nursing home.” (Might as well be a little practical about the future with all that imaginary money. Certainly no more worries about medical expenses!)

What about work? We agreed we’d have our hands full managing our foundation, even if we hired staff to run it for us. We’d also be busy traveling. The rest of the time, I’d want to write my novel.

“Better buy some tickets,” I told him. (I can dream, can’t I?)

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.

Image Credit: Yarik Mishin

Share this:

  • Share
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print
  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind Tagged With: body-mind balance, managing chronic disease, resilience, scleroderma research, travel

The Monday After

Evelyn Herwitz · January 5, 2016 · Leave a Comment

Ah, yes. Getting back to work after a long holiday weekend. It’s always a slog. Even when I’ve planned well and given myself a lighter schedule to ease back in, as I did yesterday, I still find it hard to get fully motivated.

nap-1572984-639x424When I used to work in an office, it was all too easy to spend at least half The Monday After chatting with colleagues and sorting through a gazillion emails. Trying to get any serious work done was nearly impossible. I always felt like I was waking from a long nap and just wanted to roll over and go back to sleep.

Working for myself, I don’t have coworkers to chat with or the distractions of an office setting. And I’d rather be writing than doing chores or other stuff around the house. But it was still a challenge to sit at my computer and get down to business.

That was the only good thing about the Arctic freeze that struck Monday morning (we’ve been totally spoiled with above normal temperatures here in Central Massachusetts for most of December)—it was way too cold to go outside. I stuck my arm out the front door to collect the mail and immediately decided that I would subject no more of my body to the elements for the rest of the day.

So I had to stick to my desk and get through my projects. Which I did. But it took several hours for my brain to fully focus on the work at hand.

At least I had a good reason to still be in holiday mode. New Year’s was great. We started celebrating early, last Wednesday night, because Al won four tickets to a Celtics-Lakers game in Boston (he made a contribution to United Way at the hospital and won the big raffle drawing). Not only did he win four seats—they were club seats, with great views and a bonus of free parking thrown in. The Celts lost (boo), but we had a wonderful evening with our daughters, cheering and chatting and taking silly selfies.

On New Year’s Eve, Al and I joined foodie friends for an annual festive meal and spent half the night singing our favorite oldies from the ’60s and ’70s. (How can those songs really be OLD?) The rest of the holiday weekend, I relaxed, read, saw friends at synagogue, took long walks, and worked on a photo book of pictures from our Europe trip (only five months after the fact). What could be bad?

I also managed to stay away from the news, which was probably the smartest thing I did for four days.

And now it’s back to reality. I am ever grateful to be working for myself successfully. This makes it possible to sleep a little later on the Monday after a long weekend, avoid any contact with my car and the out-of-doors if it’s just too cold to venture forth, and set my own pace with projects.

I’ve been my own boss for six years this month, and as hard as the transition has been from the workplace to self-employment, with some very sleepless nights about cash flow along the way, I’m so glad to be here, now. I am certain this arrangement has helped to keep me healthier. It’s certainly helped to keep me sane.

So, hello 2016! What’s next?

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.

Image Credit: Marcelo Gerpe

Share this:

  • Share
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print
  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: how to stay warm, managing chronic disease, resilience, vacation

Resolution Report Card

Evelyn Herwitz · December 29, 2015 · 2 Comments

As we fast approach 2016, the media are full of retrospectives, best-of lists, worst-of lists, remembrances and clearance sales. The usual accounting.

lantern-festival-06-4-1196554-639x426And, of course, it’s that time of year to consider New Year’s resolutions. But instead of coming up with a new list, I thought I’d review last year’s and see how many resolutions I actually accomplished—and how to move closer to my goals this year.

My top priority for 2015 was to enhance my weekly exercise routine. I took the plunge and joined a community fitness center. But it didn’t work out. The classes mostly consisted of repetitive movements that are hard on my joints, and the studios were as chilly as refrigerators. I could not motivate myself more than maybe three times to go to the gym and use the stationary bike. The one class I really liked cost extra. Not worth the membership. My one big accomplishment: walking 15 minutes to a half-hour around my neighborhood at least three times a week.

My New Year’s remedy: At the recommendation of my cardiologist, I checked out local colleges for indoor tracks, to continue walking warmly and safely this winter. Al is an alumnus of one of them, which gives me spouse privileges at a very reasonable rate for the campus recreation facility. I also found a new Pilates studio nearby with a variety of exercise options that enables me to use a punchcard for drop-in classes, rather than pay for classes I may miss. I have to be more consistent with exercising, to stay strong and flexible, and this seems to be a more realistic formula for success.

Decluttering our home was also high on the list. Well, we got started clearing out books and old toys. Then we stalled. I managed to cull through decades of old files from the filing cabinet in the basement—dating back to the 1980s! But I still have to consolidate what’s left in a manageable way and then transfer current files (sans unnecessary paper) to the filing cabinet from my office floor. Over the winter, I want to finally tackle the family room in the basement. On the plus side, if we hadn’t been decluttering this fall, we never would have discovered a huge plumbing leak, and damage would have been much worse.

Last New Year’s I promised myself I would limit multi-tasking and keep my to-do list to what I could actually accomplish. Let’s just say this is a work in progress. Same for spending undistracted quality time with my family, minus iPhones and other beeping gadgets. Getting better about this, but there’s plenty of room for improvement.

Did I favor locally grown, organic produce when grocery shopping? Not as much as I had intended. Need to work on that one.

Another goal for 2015—saying thank-you to someone for something specific, each day—I  try, but could be more mindful about this. I did fulfill some major community volunteer commitments, another resolution, without draining my energy, which I plan to continue.

Then there was my big creative goal: write the first draft of my novel. I haven’t finished, yet, but I am making steady progress. I’m just about at the halfway point, and I participate in a weekly workshop class in Boston that is helping me to sharpen my writing and stay on task. I’ve learned a great deal about how much is involved in an artistic project this big, and I know, now, that it’s a multi-year undertaking. That’s okay. We took an amazing trip to Europe this summer to do research for my novel that taught me I really can travel, despite the complications of my scleroderma. As I wrote last year, investing in my own art is truly central to my being—and well-being.

I need to remind myself of one more goal from last year—go/do/see someplace/something new each month. So important to keep growing.

As for adding anything new for 2016, the best goal I can think of is this: Remember to just breathe.

Best wishes to all of you, Dear Readers, for a healthy, fulfilling and prosperous 2016. Thank you for your continuing encouragement and thoughtful comments as I enter my fifth year of writing this blog. Let 2016 be a year of more progress toward a cure for scleroderma, and toward a just and lasting peace in this troubled world of ours.

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.

Image Credit: Yee Wong

Share this:

  • Share
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print
  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Taste, Touch Tagged With: exercise, managing chronic disease, mindfulness, Raynaud's, resilience

Anniversary Waltz

Evelyn Herwitz · December 15, 2015 · 2 Comments

Last week, Al and I celebrated our 31st wedding anniversary. We agreed that we wouldn’t buy gifts. More important just to spend quality time together, a welcome break from the usual hectic midweek schedule.

OLYMPUS DIGITAL CAMERAWe shared a quiet, delicious meal and a bottle of wine at our favorite Afghan restaurant. Then, on Saturday night, we enjoyed an extraordinary performance by Cirque de Soleil. And we began to plan our next trip for this coming summer—another special adventure to look forward to.

All of this was good and lovely and memorable.

But it was a very different kind of sharing on Sunday night that once again impressed upon me the blessings of our three-decades-plus marriage.

I was in the process of cooking dinner, when I reached out to open my small Cuisinart to chop up some parsley—and smashed the tip of my still-healing, infected digital ulcer on the gadget’s plastic top. It really, really hurt. Like slamming your finger in a car door.

I yelled and cursed as I walked in circles around the kitchen, trying to breathe my way through the sharp wave of pain. Usually this passes within a minute or so, but this time I really did a number on myself. The pain would not quit.

Al had been reading in the living room. In the midst of my outburst, he walked into the kitchen, opened his arms and gave me a big, soothing hug. It didn’t take the pain away, but it did help me to relax a little, the first step in gaining control of acute pain.

During the course of our meal, he proceeded to distract me, since I was still pretty uncomfortable. By the time we finished, with the help of some Tylenol, I was doing a bit better.

As Al washed the dishes, I reached into the cabinet near the sink for a mini Three Musketeers, left over from Halloween.

“You deserve that!” he said. I laughed, and agreed.

Just another episode of managing my scleroderma. We’ve been through this many times. He knows what to do, without my asking. And he never, ever complains about all the mishegas that this disease has brought to our marriage over these many years.

That is something worth celebrating. Love you, Al.

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.

Image Credit: Naama y.m.

Share this:

  • Share
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print
  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: coping with pain, finger ulcers, hands, managing chronic disease, resilience

Outside In

Evelyn Herwitz · December 8, 2015 · Leave a Comment

It’s that time of year when my digital ulcers flare up as the weather gets colder and drier. So, sure enough, a couple of weeks ago, the tip of my middle left finger got infected. Right on schedule. At least it’s been more than four months since I had to go on antibiotics. And I caught it soon enough so the pain didn’t wake me in the middle of the night.

tree-1-1498002-640x480Now, about ten days since I started oral antibiotics, after the topical version failed to work, I’m beginning to see improvement. Over decades of dealing with this problem hundreds of times, I’ve noticed that the turning point is when the outer perimeter of the ulcer begins to heal. The damaged skin slowly repairs itself from the outside in.

Not unlike a tree. When bark is damaged, especially when there’s a big gash, the tree will compartmentalize the wound by forming a callus layer of bark that looks like a thick ring. Gradually, the ring grows inward, sealing off the decayed tissue and preventing the spread of pathogens throughout the tree.

It makes sense, when you think about it. The worst part of any wound is at the center. The healthier cells are around the perimeter. So any healing would have to start where the tissue has the best circulation and access to nutrients and medications and other healing mechanisms.

Which brings me, in a roundabout way, to this past week of more horrible news here in the U.S., with the mass shooting in San Bernadino. Our nation is in great need of healing. And it certainly won’t come from the fear mongerers at the center of the public debate.

The healing will only come when people of good will speak up from the periphery and insist on sane, safe solutions to the proliferation of weapons of war in this country. We are facing not only a threat to national security, but also a public health crisis.

To those of you who are wondering why I’m writing about this instead of sticking to living with scleroderma, I can only say that it’s weighing heavily on my mind. I feel stressed every time I watch the news. That stress affects my body’s ability to heal.

Each of us has a part to play in helping our country to heal. None of us can stand at the edges and simply watch. I’m trying to sort out my own piece, as I write to you here.

With that in mind, I leave you, Dear Reader, with John Donne’s famous words, written originally in the form of a meditation in 1624:

No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee. . .

Meditation 17, Devotions upon Emergent Occasions

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.

Image Credit: Rene Cerney

Share this:

  • Share
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print
  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 43
  • Page 44
  • Page 45
  • Page 46
  • Page 47
  • Interim pages omitted …
  • Page 57
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

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…

Blog Archive

Recent Posts

  • Here We Go Again
  • Until Next Year
  • And Now for Something Completely Different
  • 700-plus
  • It’s Never Simple

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.

Copyright © 2026 · Daily Dish Pro on Genesis Framework · WordPress · Log in