Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

What Comes Next, Comes Next

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The election is over. It is not the result I had hoped for. For now, I am just trying to keep my head on straight and focus on what’s in front of me.

And so, I took a walk Sunday afternoon, in the sharp, unflinching November light that reveals each detail of bark and lichen and crumbled leaf. A friend had mentioned a lake not far away that you can circumnavigate via a pontoon bridge that connects to a woodland trail. The weather was pleasant, not too cool, not too hot. And I needed to clear my head.

It took me about 45 minutes to walk the full route. Water gurgled as it lapped the pontoon bridge, a popular attraction for families pushing strollers. A gaggle of teen boys asked me to take their photo against a backdrop of sun-illumined lake. Children ran ahead of their parents, delighting in the novelty of walking across water. Others whined until they were picked up and carried by moms, “just for a little while.”  The woodland walk was less traveled, peaceful, more conducive to sifting and sorting my emotions.

What struck me most, however, along the whole route, was the number of different languages I overheard. That, and the friendly greetings of strangers. Whatever the outcome of this election, we are a big-hearted country made up of people from all over the world who call America home. Many of us, myself included, are children of immigrants and, yes, refugees. Whatever happens, we must remember that. Our diversity, our generosity, our kindness—these are our true strengths.

Here are some photos. Hope you enjoy.

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.

Take a Deep Breath

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As we head into next week’s election, I’m reminding myself to breathe. Just breathe.

And the way to breathe matters. A couple of years ago, I discovered an important lesson: If you breathe from your chest when you are stressed, it triggers your fight-or-flight response, an adrenaline rush, and fuels anxiety. If you breathe from your diaphragm, it cancels out the fight-or-flight anxiety reaction and calms you down. It really works. Here’s an explanation from the Cleveland Clinic, which is an excellent source of vetted medical information.

Simple? Yes. Why it took me until I was in my late ’60s to learn this? No clue. This practice is central to meditation, which I also find helpful. But I didn’t know how the chest breathing really exacerbates stress until I was untangling the very uncomfortable sensations of what turned out to be Type II Pulmonary Hypertension, a late stage complication of scleroderma.

So, I pass this lesson along to you, Dear Reader. I hope you find it helpful as you confront your own worst fears and stresses.

Be well.

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: Harli Marten

Choose Humanity

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I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. Enjoy!

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.

Courier Service

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A few weeks ago, I had a series of pulmonary function tests—a routine, annual procedure, just tracking my lungs’ status. I’ve been doing these tests at a local hospital for decades, now, so I continue to do the procedure there to keep a comprehensive record.

Only one problem: the hospital’s electronic medical records do not speak to my providers’ electronic medical records, either here at home or at Boston Medical. So, I have to track down my test results each time, get a printout, and bring them to my Boston Medical pulmonologist for our next appointment.

Now, you might wonder, why not have the tests done at Boston Medical? Their EMR speaks to my local providers’ EMR, and vice versa. And the answer is: I don’t want to have to make yet another trip to Boston for yet another test.

HIPAA regulations do not make this process any easier. As of this PFT appointment, the respiratory tech could not give me any printouts. I signed a bunch of forms to be sure the results got to my local rheumatologist, who had ordered the series for me. I also signed forms to send them to my Boston Medical rheumatologist. But, having learned to be a skeptic about the efficiency of medical systems sharing information with one another, I decided to get a hard copy to bring with me, just in case.

Where to start? Seems like the obvious place would be the hospital’s medical records department. I looked up the number online and placed a call, only to get a message that the number was no longer in service. No info about whom to call or how to get any help. Not encouraging. I contemplated going to the hospital in person, but reconsidered. I was not in the mood to beat my head against the wall.

I knew the results were available, because I had received a message in MyChart to that effect. But when I went to look in my electronic medical record, all I found was a blank page. Aargh.

So I called my local rheumatologist’s office and asked if they could get me a hard copy. Fortunately, I spoke with a very helpful nurse who could see the actual results online (only viewable by the provider, not the patient, for some dumb reason). She put in a request to my rheumatologist to get me a printout.

Lo and behold, a day later, I got a message that the results were waiting for me. All I had to do was drive over to their office and pick them up. I could have had the printout mailed, but I wasn’t sure I’d receive them before my Thursday appointment. And so, on a sunny Monday afternoon, I took time out of a busy day to get my test results, which were, as promised, waiting for me in an envelope with my name on it.

Dealing with a chronic illness requires a lot of managing—not only your own health, but also coordinating all your specialists and keeping track of a ton of information. I’ve been at this for many years, and I take it mostly in stride. But I always wonder: Why does it have to be this complicated? And why can’t I see any test result that is my own when I want to? And why must EMRs from different systems be unable to share my information, even if I authorize it? In 2024?

Sometimes, it feels like yelling into a rain barrel.

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: Lobby Card from the 1925 film “The Pony Express” via Wiki Commons