• 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

Fly Away

Evelyn Herwitz · July 14, 2015 · Leave a Comment

When we moved into our home 16 years ago, one of Al’s brothers gave us a squirrel-proof bird feeder as a house warming gift. Last month, we finally hung it on the Norway Maple in the back yard.

Our delay was due, in large part, to Ginger. A frustrated huntress her whole life (she was, after all, a Golden Retriever), she would have had conniption fits with so many birds in the back yard. Now, with her gone, it’s time to give wildlife its due.

birdsAnd so, my morning’s entertainment, as I eat breakfast, is to watch the birds at the feeder. This is, without question, one of the best antidotes to stress that I have ever discovered. For me—not for the birds.

In fact, our backyard feeder has become quite the point of contention. A blight of house sparrows (yes, “blight” is the actual term for a group of them, or, if you prefer, a “humiliation”) has taken over the feeder. I had no idea they were so aggressive. They have batted away chickadees and house finches and scared off nuthatches. No cardinals have visited the feeder yet, despite the fact that we’ve filled it with black oil sunflower seeds (which house sparrows supposedly don’t like—not true). Morning doves, being ground feeders like their pigeon cousins, clean up what drops below, along with a chipmunk.

I can vouch for the manufacturer’s promise that the feeder is squirrel-proof. One particularly inquisitive gray squirrel has tried numerous ways to get at the seeds (I know there’s something in there!) by climbing all around it, and even going so far as to grab and pull down the springy perch. But so far, it hasn’t found a way to get the goods (though I must say, as a former psych major, the squirrel’s attempts are a fascinating study in learning styles).

The feeder’s hopper is full. When we return from our vacation at month’s end, I wonder how much will be left and if the sparrows will still dominate. Maybe the house finch, with its beautiful scarlet head feathers, will have finally told them off. Either that, or we’ll have a lot of house sparrows nesting in our eaves.

Meanwhile, as I make final preparations for our European travels, checking off items on to-do lists that seem to propagate over night, trying to plan for every possible health-related contingency and knowing that I will just have to deal with whatever happens, scrambling to finish off work for clients and my sewing and last-minute purchasing, I will continue to watch the birds and cheer for the house finch, which grabbed a few seeds while the sparrows weren’t looking.

If all goes according to plan, as you read this, we will be in Berlin, the first of seven cities on our complicated itinerary that takes us from Germany to France to Belgium to England to Ireland. All in the name of research for my novel and visits with friends and, yes, adventure.

Time for a break from blogging. Whatever your own summer plans, I wish you well. See you in a few weeks.

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.

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 Tagged With: body-mind balance, resilience, travel, vacation

Pep Talk

Evelyn Herwitz · June 16, 2015 · 4 Comments

No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols

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: body image, body-mind balance, exercise, feet, resilience

Hail, Caesar!

Evelyn Herwitz · June 9, 2015 · Leave a Comment

I tried an experiment last week. I had to go to New York City on business overnight. There is no easy, direct public transit from Central Massachusetts. So, because I was in Boston during the day on Wednesday, I took Amtrak to Manhattan, and planned to take a bus back home the following evening. The bus was scheduled to make three stops in Connecticut along the way, including a transfer in Hartford.

247603105_e1a7241212_zI’m not crazy about long bus trips, but the plan saved me from having to drive home late at night, either from Boston in the east or from Springfield in the west, if I had gone Amtrak all the way. 

I thought I was being very organized. I had all my tickets printed out, in addition to the email versions on my phone. For some reason, the bus tickets (one for each leg of the trip home) printed out back to back, which rarely happens on my printer. So I assumed it was intentional to save paper.

Wrong. After a full day’s meeting on Thursday, I made my way to the Port Authority Bus Terminal in Midtown and found my gate. Then I noticed, to my dismay, that everyone else in line had two tickets—one to Hartford, and one to their connection.

When it was my turn to present my ticket and photo ID to our driver, I explained my dilemma and asked if I could just show him the ticket and keep it for my transfer. No, he informed me, he had to take it. They don’t accept electronic versions. Only paper. I needed to reprint my ticket when I got to Hartford.

Now, we had 15 minutes in the schedule to transfer busses. I knew the Hartford bus station was small. But I was nervous. And frustrated. If only I’d thought to make a second copy, just in case. After everyone was on the bus and our driver was finishing his paperwork, I asked him again if there was any chance I could show the PDF on my phone to the other driver. No, he reiterated, but he was sure I’d have enough time to take care of it in Hartford.

Nothing I could do but wait the three hours until we got there. We pulled out of the below-ground gate and up into traffic. Lots of it. Our driver welcomed us on the bus and introduced himself as Caesar. If it was too hot or too cold, he said, let him know. No loud phone conversations or music. No photos. I watched a flock of pigeons battling over something on a sidewalk and told myself there was no use getting upset. I just needed to sit back and see what happened.

By the time we got to New Haven, our first stop, we were already 20 minutes late. I was trying my best not to freak out. I called Al and gave him a head’s up—if I couldn’t make my connection, I needed him to drive over an hour to pick me up. Fortunately, he was his good-natured self about this delightful prospect, which at least eased the pressure.

For reasons unknown, on the way to our next stop, New Britain, we got off the highway and onto a series of side roads and byways lined with strip malls, then back on the highway. That put us behind by 25 minutes. I had no idea where we were, so I followed our route on my phone app, just to reassure myself we weren’t lost.

Finally, we pulled into Hartford, a full half-hour behind. I had traded seats with my seat-mate to be on the aisle and able to get off sooner. Caesar told us the gate number for our connection. By a miracle—or, rather, the inefficiency of bus travel—that bus was late, too, and had not yet arrived. So I grabbed my bag and ran to the ticket counter.

The ticket agent was, of course, helping someone else. And. Taking. A. Long. Time. I asked if I could just reprint my ticket, and she told me to wait my turn. Then she announced that her computer was not allowing her to print the other customer’s ticket. Meanwhile, the connecting bus had arrived.

I was at a loss for what to do. Fortunately, Caesar had come to the ticket counter. I’m not sure if he would have checked in anyway, or if he was following up on me. But given that we’d arrived late and he was due in Springfield, he could have just left. Instead, he walked with me back to our bus, pulled out his envelope of tickets, found mine, walked me back to the ticket counter and asked the agent to make me a copy. Of course, the copier was off and needed to charge. Did I mention this is not a 21st century operation? But within a couple more long minutes, it fired up and I had my copy. I thanked Caesar profusely and ran to the connecting gate.

I was the last person on the bus. We sat for another 10 minutes, for reasons unknown, and then departed. I called Al to let him know I’d made it.

“I guaranteed you would,” he said.

“How?”

“I just looked up the directions to Hartford.”

We laughed. Thank goodness. In the end, I made it to our own Union Station just 15 minutes later than I should have and was very glad, indeed, to see Al waiting for me with an open car door.

My knees were shot from the bus ride, with its cramped seating and worn out shock absorbers. And my nerves were a bit frayed. I was really tired. But if it weren’t for our driver, who took the extra few minutes to make sure I was able to make my connection—despite the fact that I was the only one on his bus who did not know the rules of the archaic ticketing system—it would have been a much longer ordeal. Maybe he took pity on me. Or maybe he thought it was ridiculous, too.

Hail, Caesar.

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.

Photo Credit: Daniel Lobo

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: body-mind balance, managing chronic disease, mindfulness, resilience, travel

Salute

Evelyn Herwitz · May 26, 2015 · 2 Comments

Memorial Day is just past, the unofficial beginning of summer. I know this because my email in-box has been swamped with sales promotions since last Thursday, the scent of barbecues wafted through our neighborhood for the past three days, and numerous friends posted testimonials to veterans on Facebook.

Beyond that, however, one could easily have spent the entire past weekend with no sense of the holiday that marks sacrifices made by our nation’s soldiers.

On Sunday and Monday, Al and I walked to friends‘ homes to share meals. We strolled along leafy green streets, watched kids shooting hoops in driveways, greeted neighbors working in their gardens. I thought how lucky we are to live in a place that’s so peaceful and safe—untouched by the ravages of war on home soil.

We have our nation’s strong defenses to thank for that, and I’m grateful to all those who serve to protect us from harm. There are many, many problems to solve in this country, and our security in a dangerous world is not a given.

It’s easy to forget this as we get immersed in life’s daily upsets and annoyances. On Friday afternoon, I went to CVS to pick up a prescription that I’d called in the week before. It had been misplaced. After twenty minutes of fruitless searching, the pharmacist refilled the order. But she told me that she could only give me 30 days’ worth of pills, rather than the 90 days I was accustomed to, due to an unannounced change in our insurance. This had significant financial implications—the copay is $100 for one month’s supply, but had been $200 for three months. So, now, I am stuck with a whopping 50 percent increase for medication I need. This made me quite frustrated, to say the least.

By Monday evening, however, I had regained perspective. Yes, this is unfair and extremely expensive. But I consider myself very fortunate to be able to get the medications and health care I need to stay strong—despite the many imperfections in our health care system. Elsewhere in the world, where those systems break down due to war or civil insurrection, managing a chronic disease can become impossible.

When I was growing up in the early ’60s, we marked Memorial Day with a parade in our town. I was a Girl Scout, and we marched with our troop in green uniforms and badge sashes and white gloves, along with our elementary school principal and school district leadership and the local post of the Veterans of Foreign Wars. There were bands and flags and red-white-and-blue bunting on buildings. It was both solemn and exciting to participate. I had a sense of being a part of something greater than myself.

In recalling this, I am not trying to glorify or sentimentalize war or to promote ersatz patriotism, which only serves to muddy serious and necessary debate about our country’s future. I simply think something important has been lost when Memorial Day is no longer a communal occasion for honoring veterans—when our attention span has shrunken to “liking” a salute to veterans on Facebook, and the weekend’s main events are barbecues and car sales.

In synagogue this weekend, we said a special memorial prayer for all of the soldiers who have served our country. Our rabbi called up any veterans for recognition at the end of services. Three men stood up—all in their eighties.

I’m glad they’re still with us. And I’m grateful to so many others who have been injured or who laid down their lives to protect the rest of us, so we can enjoy a good meal with friends on a warm May evening without a second thought.

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.

Photo Credit: Christopher Koppes

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, Smell Tagged With: managing chronic disease, resilience

Reprieve

Evelyn Herwitz · May 5, 2015 · Leave a Comment

The windows are open and James Brown belts “I Feel Good” on our local NPR station as I write at the dining room table this Monday evening. Earlier today, I took a walk without a coat, without a jacket, without gloves or a hat. All the trees on our street are leafing, the magnolias are in full bloom, joined by forsythias and rhododendrons, tulips and violets.

NYC SkylineIt actually hit 79 this afternoon when I was out running errands, although my Prius recorded the outdoor temp as 64. I think it was as shocked as I, that it finally looks and feels like spring.

Even better, I’m down to only four bandages on my fingers. Still on oral antibiotics to ensure that one very persistent infected ulcer continues to recede, oh so slowly. Both thumbs will also take more time to heal and a chronic spot on the inside of my right ring finger has acted up. But compared to where I was just a month ago, it feels like my hands are nearly bare.

This is all the more amazing, given that I did a lot of traveling last week. Business took me to Manhattan for an overnight and then a train ride back to Boston for another overnight, to conserve my energy for a writer’s conference the following day. I schlepped my wheeling carry-on bag around Midtown and Chelsea, down and up subway stairs (why are there so few escalators and elevators?), over curbs and streets and sidewalks being torn up and repaired, in and out of hotels, up and down train platforms. One very considerate New Yorker (yes, they do exist) helped me carry my bag up a second flight of subway stairs, but I did much of the hauling myself.

My hands, for the most part, did okay, since I was extremely careful with how I grasped the bag’s padded handle. But my right arm began to protest by the end of the trip. What a relief to discover that there’s a working escalator from the Amtrak platform to Boston’s Back Bay Station (not so for commuter rail tracks) when I arrived late Thursday night—and only a three minute walk to my hotel.

I was also compulsive about wearing gloves and using hand sanitizer throughout the trip. It paid off. No new infections.

I’m getting better at travel logistics. Definitely easier to pull this off as the weather improves. My new coat was just the right weight and protection for cooler, 60ish temps last week. And the travel blanket I carry with me provided the extra layer of warmth I needed on the train, which was way too air conditioned, per usual.

Coming home on the commuter rail to our home station, after a stimulating, rewarding few days, I was wiped. No energy left to read much or write on the train, just watched the scenery fly by. I was grateful I wasn’t driving. I was very glad to see Al, standing near the platform, as we pulled into the station. We enjoyed a lovely Shabbat dinner together at home. I slept soundly.

Tonight, the windows are open and its still 70 degrees. Soul Serenade is wrapping up with “Lord, I Feel Like Going Home.” It’s finally spring.

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.

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: finger ulcers, managing chronic disease, Raynaud's, resilience, travel

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 46
  • Page 47
  • Page 48
  • Page 49
  • Page 50
  • 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