• 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

State of Mind

Evelyn Herwitz · July 22, 2014 · Leave a Comment

It’s finally here, a week when Al and I kick back and take advantage of all that New England has to offer in the summer, beautiful and fascinating places that other people travel miles and miles to visit, but just happen to be within a few hours’ drive of our home.

We got into summer day-tripping a few years ago to economize, and now it’s become a highlight of the year. We started off on Sunday with an afternoon in Boston’s South End, browsing stores and artist lofts and outdoor booths filled with all kinds of crafts, a massive indoor vintage market (read, upscale term for flea market), plus a farmer’s market.

Strawberry Banke 7-21-14On Monday, we drove up to Portsmouth, N.H., to Strawbery Banke, a living history museum covering four centuries of life in one of that city’s oldest communities. Period homes are surrounded by heritage gardens, including one with a children’s tea party set amidst fanciful fairy houses.

I wouldn’t mind living there for a while. In the fairy garden, I mean.

Even as I’m enjoying the break from routine, the glorious weather so far and discovering regional treasures, I’m having some trouble separating out from what else is going on in the world. When you leave your home for a period of days or weeks, it’s easier to take a complete mental break. This is essential to recharging and relaxing, so critical to maintaining health and well-being.

But I can’t seem to tear myself away from following news in the Middle East. Trying to set a limit, but I feel compelled to keep up, even as I find the developments so stressful. Too much is at stake.

So I was grateful to find an oasis of peace right here in our hometown Sunday night. A few years ago, Al and I decided to initiate an interfaith dialogue between our synagogue and a local mosque. Since that time, members of both our communities have studied texts together, broken bread and come to understand how much our faith traditions have in common.

Weeks before the most recent hostilities broke out between Israel and Hamas, our friends at the mosque had invited us to join them for a Ramadan break-fast. And so, this past Sunday evening, a group of our congregants and our rabbi went to the mosque and shared in a study session about the meaning of the Ramadan fast. We explained fasting in our Jewish tradition. We asked questions. And we learned, once again, how much we have in common.

What made the deepest impression on me, as I listened, was how both Ramadan and Yom Kippur are intended for introspection, self-improvement, mending relationships, bringing goodness into the world and drawing closer to God. Both faith traditions are deeply committed to peace.

I will carry that awareness with me as I follow the news and pray that the best in both sides will prevail. And I’ll try to create my own inner space of peace, appreciating what is good and beautiful all around me, as I take a break from headlines, deadlines and most of my responsibilities for a week. The alternative is to wear myself out, and that won’t do anyone any good, especially me.

After all, vacation, no matter where you are or how you do it, is really only a state of mind.

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, Taste Tagged With: body-mind balance, mindfulness, resilience, vacation

And I Didn’t Get Sick

Evelyn Herwitz · July 15, 2014 · 2 Comments

Sitting in St. Louis’s Lambert Airport on Monday morning as I type on my laptop, watching fellow passengers gather at my gate. Surprisingly, some people are actually sitting and talking with their neighbors, rather than burying their noses in cell phones or tablets. One woman is reading a book. As in, the kind made out of paper.

photo-1But plenty of others are typing on laptops, like me, or talking business on smartphones (loudly—don’t they know others are listening?) or texting or checking emails or playing games on tablets. There are comfy armchairs next to electrical outlets to accommodate all our gizmos. I have managed to get everything into my carry-on and purse, so no worries ahead about losing luggage. I’m getting better at air travel since my trip here last year, when my return flight connected through JFK and my checked bag disappeared for 24 hours.

Despite Midwest heat and humidity, the sky is robin’s egg blue with puffy cumulous clouds. A pleasant end to a lovely weekend with my older sister and family, including a visit to the exquisite St.Louis Art Museum, great meals featuring my brother-in-law’s home-grown vegetables, an al fresco Italian dinner, Shabbat services at a local congregation that felt just like home, sharing the Cardinal’s ups and downs against the Pirates and the Brewers, a Sunday brunch with friends, the World Cup finale, and a drizzly performance of Gershwin’s Porgy and Bess at the outdoor Muny Opera (one hour rain delay halfway through Act 1, and the show was cancelled before the last three songs due to approaching thunderstorms, but even so, the music and acting were terrific).

The highlight of our weekend together was hearing my sister, a talented flutist, perform wonderful music with her woodwind quintet at a local bistro. That, and sharing old family stories. “Are you making that up?” she asked me, laughing, since I can always remember more about the past than she, even as we’re both getting a bit fuzzy about recent events. Ah, the power of longterm memory.

Travel remains a challenge—inevitably, the bandages on my finger ulcers get messy and loose, and I need to manage my energy and joints. Getting through security is exhausting, with all the lifting and sorting, organizing purse, shoes, laptop in gray rectangular buckets and then reorganizing everything quickly so as not hold up the person behind me. But fellow travelers have been very helpful, especially with hoisting my bag into the overhead storage bin and retrieving it. And so far, no one’s been too pushy or impatient.

I also decided to pay extra to fly direct this time, to save wear and tear on my body. Definitely the way to go, when possible. So much less stressful, all around.

Best of all (though perhaps I’m tempting fate, here), I have not gotten sick on this trip as on previous ventures in the recent past. No infected ulcers. No cellulitis. No cold virus. No eye infection. No rotten tooth. My worst physical ailment has been reduced hearing and stuffy ears for about 12 hours after landing. All good, and encouraging.

Travel doesn’t always have to mean setting myself back. It can just mean having a great visit with my Big Sis.

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, Taste, Touch Tagged With: travel, vacation

Long Shadows

Evelyn Herwitz · July 1, 2014 · 2 Comments

At last. Sitting on the beach, in the sun, watching the waves roll in. I’m wearing shorts and a tank top, lots of SPF 50 sunscreen to avoid getting a rash on my photo-sensitive skin. I won’t be swimming, because the Atlantic is far too cold this early in the season, and the waters off Block Island, R.I., are chilly, and I have ulcers on my fingers that I can’t risk immersing.

But it feels good to be here. Even if the breeze is stiff and I have to pull on extra layers as Sunday afternoon deepens. Even if I can’t swim like I used to as a kid, jumping over the waves and body surfing until I turned blue and my teeth wouldn’t stop chattering.

So I sit in my beach chair and read a novel, do a little of the Sunday New York Times crossword, watch Al swim and dive in the surf. I take a nap and work on my tan (have to be careful with this, not overdo, given skin sensitivity). I wonder why the people next to us on the beach, with very loud voices, don’t realize that everyone within 20 feet, at least, can hear every word of their conversation, including how one of the men and two of his friends each won $500 at a craps table in Montreal and other fascinating details (for them, not for the rest of us).

Fortunately, I’m able to screen out their conversation when I read. And no one really seems to mind. On the beach, on a sunny Sunday, it’s live and let live.

As shadows elongate, we walk up the shore, collecting pebbles and even a few bits of sea glass—unusual for this beach, which is usually picked clean. I sit on a large rock as Al explores farther, my arms wrapped around knees to stay warm in the cool breeze, and watch a dad and his three daughters, all in wet suits, play catch with a pink-and-yellow rubber ball in the surf.

On our walk back, we pass a black-and-white mutt worrying a piece of driftwood, barking at its owners as they play in the water, then barking at the driftwood, then shoving the driftwood around with its nose and barking at it again. Someone has made a terraced sandcastle with smooth, rectangular walls; another has created a castle of sand globs and drizzles.

We eat dinner al fresco, across the road from sand dunes, deep turquoise ocean just visible beyond. We stop for an ice cream cone for Al and poke around the little shops. I find a scarf the color of sunset. We check on the Red Sox v Yankees score as the ferry pulls away from the dock for the hour-long trip back to shore. Our boys are ahead.

The day is a welcome escape from work and responsibility and so much sad and disturbing news in the world. On Monday afternoon, headlines announce the tragic murder of the three Israeli teens who were kidnapped more than two weeks ago, hitching home from school, and I sit at my computer screen and cannot concentrate on my writing. Our sunny, relaxing beach trip seems far away. I grieve for the parents and pray that cooler heads prevail, on both sides of this intractable conflict that could erupt at any moment. No good will come of more bloodshed. I pray that my eldest, Mindi, stays safe as she spends the remainder of her vacation in Tel Aviv.

If only we could all just go to the beach and, together, enjoy the waves, and the sun and a long, relaxing stroll as shadows grow long. Naive, I know. If only.

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, photosensitive skin, Raynaud's

Violet Thread

Evelyn Herwitz · June 24, 2014 · Leave a Comment

Just three bandaged fingers. That’s all. Pretty good for June, before the weather gets really hot. And only one fingertip has a persistent ulcer that’s taken months to begin closing. The other two, my thumbs, need extra protection for sensitive skin that I hope will heal as temperatures finally rise here in New England.

I’m sure I’ll be griping along with the rest of my neighbors when we hit the inevitable mid-summer muggy heat wave. But for now, the prospect of 80 degree temps this week sounds grand.

My gums are also healing from last month’s emergency tooth extraction, the tissues filling in over the bone graft where my resorbing, sore molar once resided. In a couple more months, it will be time for the implant. By Thanksgiving, I hope to have all my teeth again. And, hopefully, sometime between now and then, our dental insurance plan will find the paperwork from the periodontist’s office that justifies the bone graft as preparation for an implant, instead of informing us that it was not “dentally necessary” and refusing to send a reimbursement.

I’ve been sewing, too, mending clothes for my eldest, Mindi, before she left last week for Israel. I patched a favorite pair of jeans, even found matching fabric from a similar pair that belonged to her sister, after Em trimmed hers for summer cut-offs. With a few daubs of superglue, I mended a broken purse-strap. Next on the list: restitching a waistband. I just need to pick up the right shade of violet thread, which gives me a good excuse to go to the fabric store and peruse the sewing catalogues.

As I write on Sunday morning, Al is out back, clearing brush, weeding, puttering in the yard. I spoke to our arborist on Friday about tree maintenance, and we now have a pruning estimate for the overgrown Bradford pear, Japanese maple, Norway maple and yews, plus an environmentally friendly solution for the plant bugs (yup, that’s what they’re called) that have infested our boxwood hedges.

Halfway across the world, as Mindi co-leads a group on a whirlwind Israel tour, things are not as calm. A few days before she left, three Israeli teens were kidnapped by terrorists while hiking in the West Bank; tensions are mounting as Israeli forces search for the missing boys, arresting hundreds of Palestinian suspects. The leader of the Palestinian Authority has condemned the kidnappings and vowed cooperation. But retaliatory rockets were fired from Gaza into southern Israel over the weekend, not far from where her tour group was supposed to spend Shabbat, and intercepted. A few Palestinians have died; the IDF asserts self-defense. This will get worse before it gets resolved.

Mindi comes back to the States in early July. Meanwhile, Iraq is erupting in bloody sectarian civil war. I asked a friend who is a veteran of Iraq, Afghanistan and Vietnam for his assessment. The Iraqi government is totally corrupt, he says. Not even their own troops want to fight for them. I watch news reports and feel sorrow for the innocent citizens trapped in the middle and grateful that our country, for all its serious problems, is relatively peaceful and secure.

I am trying not to let all of this news make me crazy while Mindi is so near the action. We’ve been through tense times before when she lived in Tel Aviv during the rocket attacks in 2012. Life is never without risks. I remind myself that the odds of serious injury or worse are greater whenever I drive on the Mass Pike than when my adventurous daughter travels abroad.

And so, I focus on repairing what’s within my control. I tend my finger ulcers. I follow my periodontist’s directions to care for my healing gums. I plan a pruning schedule for overgrown trees. And I pull out my sewing machine and go to the fabric store for violet thread.

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, finger ulcers, mindfulness, resilience, stress management

Multitasking

Evelyn Herwitz · June 10, 2014 · 2 Comments

Friday morning. While brushing my teeth, thinking through the day ahead (must leave the house by 10:00 to get to my 11:40 annual cardiology check-up in Boston, must take my laptop with access to work files for the inevitable waiting-room doldrums), I suddenly wonder: I see my rheumatologist in two weeks, but I know he ordered a pulmonary function test to be done prior to the visit. Is it today?

I check the calendar on my cellphone. Sure enough—PFT at 2:30. I never transferred it to my desk planner (yes, I prefer a paper calendar for a weekly overview, easier to get the gestalt).

My entire afternoon is now in flux. I had a lot of work planned for when I got home. Now I really need to be in full portable office mode. I check emails before I leave. One of my clients needs to discuss a consultant’s proposal. I suggest a 1:30 call. I should be out of my first appointment and waiting for the second by then, and I can park myself in the lobby outside the diagnostic lab for the conference call. Laptop, cellphone and charger stowed in my purse, I head out the door.

Fortunately, traffic is moving well, and I arrive for my first appointment ahead of time. My doc is running a bit behind. There’s an electrical outlet near one of the chairs in the waiting room. Perfect. I set up my laptop with the charger, so I won’t drain the battery later, and begin to work through emails. Of course, this magically conjures the cardiology tech, who calls me in for my appointment.

Juggling purse, coat, computer and cord, I make it through the preliminaries of weight check-in. As she records my blood pressure and oxygenation level, my mind is on my work. I sit on the edge of the exam chair, waiting for her to calibrate the EKG machine, and watch the black second-hand of the wall clock. Click-click-click-click-click.

EKG recorded, I set up my laptop and log into the WIFI. I’m about to start up with the emails, but stop myself. Oh, right. The reason I’m here is to see my cardiologist. Better make some notes about issues to discuss. I jot these down in a small notebook and go back to work. I finish typing as my cardiologist enters the room. Switch gears. This is about my health, now.

Ok, focus. The main issue of concern is a recent episode of shortness of breath. At a party in March, I had been dancing vigorously and then stopped because my knees were getting tired. As soon as I sat down, I had trouble catching my breath. This is why I have the PFT scheduled at 2:30, to get a current reading on my diffusion rate. My cardiologist reviews the details carefully. We have been working with a hypothesis of exercise-induced pulmonary hypertension, a variant of late-stage complications of scleroderma, for several years, now. It could be that, it could be something else. But the episodes are infrequent (fortunately), my echocardiogram history is consistent and my meds are all in order, so for now, he tells me, just avoid sudden, strenuous exertion, which seems to be the trigger. Keep on exercising, though. And if it happens spontaneously or more frequently, call him. He schedules a follow-up in six months. I feel reassured.

Over the next hour, I fit in lunch and search for a quiet place to work with a WIFI signal. This takes persistence. The signal is inconsistent, depending on location. But by 1:30, I’m back online, in a lobby with hardly anyone around, and am able to speak for a half-hour with my clients in NYC. I follow up with some other business, plus texts and emails with my eldest daughter. I make it to the pulmonary function lab at exactly 2:30.

More waiting. The lab tech needs to make a call, so I squeeze in another text response. Now for the tests. She reviews the procedure, which I’ve done many times, and begins instructing me to first breathe normally into the tubing attached to diagnostic equipment, then take a big breath in, push it all out and another big breathe in. It’s physically challenging for me, and requires mindful awareness of what constitutes a full breath in and a full breath out. As we’re running the test, she chats with another tech who is making a phone call.

Then a doctor—I assume, he’s wearing a white lab coat and the techs wear blue scrubs—steps into the open doorway. We’re repeating the test, the tech is waving her hand in a sine curve to indicate I should continue normal breathing, I’m trying to focus on what I’m supposed to be doing, and he’s telling her that there’s an issue with her quality scores for some research study that they’re involved in. He continues to discuss this with her as she defends herself and interjects verbal and visual cues to me—when to push out, when to breathe in.

Finally he leaves. Time for a break between tests. She realizes she forgot to set up the next test correctly and needs to recalibrate the equipment. She’s obviously flustered. I try to say something reassuring. I field another text from my daughter as we wait. We talk about our children, about texting, about staying in touch. I feel awkward for her. How humiliating, that her superior would give her critical feedback while I’m sitting there. And how uneasy it makes me feel, wondering if she knows what she’s doing, though she certainly seems to. And how ridiculous, to be conducting that conversation while we’re engaged in a diagnostic that requires concentration.

But of course, we all multitask. It’s a given, right?

Later, much later, after I’ve driven home through Friday afternoon traffic and have finished all the record-keeping, follow-up emails and return phone calls, and I can finally forget about work and relax over Shabbat dinner, I pause and notice—the pink peonies and purple irises in a blue ceramic vase, the white candles flickering, Ginger’s steady panting under the table, the smell of warm challah and sweet potatoes and baked cod. So good to slow down and just be. So good.

Photo Credit: mr.beaver 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.

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: exercise, managing chronic disease, mindfulness, pulmonary hypertension

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 50
  • Page 51
  • Page 52
  • Page 53
  • Page 54
  • Interim pages omitted …
  • Page 58
  • 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

  • The Best Medicine
  • Back on the Block
  • Down the Hatch
  • Dappled
  • Down to Three

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