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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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mindfulness

Backyard Ramble

Evelyn Herwitz · October 18, 2022 · 6 Comments

On Sunday I was feeling cranky. We needed to clean the house. I needed to get my Covid bivalent booster, but I didn’t have an appointment. Too much to do, not enough time.

Fortunately, my wise husband convinced me to get outside on a beautiful fall day to show me a new trail he’d discovered. Our Fair City has many hidden hiking trails that are a short drive from home, and he loves to explore them. This one was once home to a cider mill that has long since disappeared, but the field stone foundation remains, as well as two mill ponds and a stream that once powered the mill. The trail winds around the ponds and stream amidst oaks and maples and white pines and sassafras. Walking through the stunning fall foliage was just the antidote I needed, and I returned home refreshed. As for my booster shot, it can wait until Thursday. Hope you enjoy the view . . .


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, Smell Tagged With: body-mind balance, mindfulness, resilience

Reunion

Evelyn Herwitz · October 11, 2022 · 2 Comments

This past Saturday evening I found myself at an old-time, family-run Italian restaurant not far from where I grew up. Along with several dozen former high school classmates, we were celebrating that milestone event, our 50th reunion. But for the name tags with our senior class photos, most of us would never have recognized each other, now grayer, heavier or thin with wrinkles, stooped. Hellos were immediately followed by squinting at the name tags and an, “Oh, I remember you!” Or not.

None of my high school friends made it, unfortunately, but the evening was pleasant and the conversations up-beat. Everyone I sat with was wise enough to stay away from politics. It was a good reminder that, despite our national discourse feeling like a high school hellscape, most people are considerate adults. We all grew up a long time ago.

The real highlight of my short visit back home, however, was the ever-stunning beauty of the Hudson River Valley. Someone somewhere (I keep thinking it’s Edith Wharton, but can’t find the quote) said that the landscapes of our childhood remain deeply imprinted in our hearts and minds.

So it is for me, growing up near Peekskill, N.Y. I don’t know if I fully appreciated it when I was young, but I was thrilled by the view outside my room at the old motel where our grandparents used to stay when they’d come from Cincinnati to visit—a wide expanse of the Hudson, glittering in the late day sun. Trains that run alongside the river hooted long and low, and even though we lived far from the river itself, that sound was wonderfully evocative of my childhood, beloved music that drifted across hills and woods to my ears, especially at night, especially in summertime when the windows were open.

I sent a picture of the view to my daughters, and my eldest texted back that I should go to Bear Mountain, which had always been a favorite spot when we’d come down to New York for Thanksgiving weekend. On Sunday morning, I checked out of the motel and took her advice, as the state park was only a short drive across the river. The route along the Hudson is winding and narrow, along a rock cliff, and I am no fan of heights, but I just focused on the road ahead as I crossed the iconic Bear Mountain Bridge, with its fieldstone toll house, no longer in operation. It was either that or another fieldstone shelter at Bear Mountain that makes a cameo appearance at the beginning of Jack Kerouac’s On the Road.

Up the squiggly road to the overlook at the mountain’s top, I was followed by a couple of guys on motorcycles, but they were in no rush to overtake me on such a winding route with only large jagged rocks between us and the sharp dropoff. I passed a few intrepid cyclists on the way. At the top, the view did not disappoint, though enough other folks had decided to get there ahead of the weekend holiday crowd that there was no space to linger. I got a better view of the Hudson on my way back down, at a scenic overlook, alongside several tourists with real cameras equipped with telephoto lenses.

From Bear Mountain I drove through Peekskill, which, to my amazement, has barely changed since I was last there, at least 20 years ago. Some of the same mom and pop businesses still remain. The downtown, such as it is, remains dominated by red brick storefronts and the odd, curved, windowless, painted brick building that once housed Genung’s, the local department store where my mom bought me my first bra.

With a little help from my GPS to drive in the right direction out of town, I found my way to the familiar route to our old home. There were a few notable changes: the nunnery is now a condo complex; the community hospital where our mother was treated for the cancer that took her life in 1999 is now owned by New York Presbyterian Hospital.

I turned off the GPS and continued on, past houses that look much as they did when the school bus drove us by, past the decaying one room school house that’s now barely recognizable, past the gas station and general store where we’d walk sometimes to get Bazooka Bubblegum, past what was once a dude ranch for city folks that became a yeshivah while my dad was still living here, to the familiar left-hand turn onto our old road.

The house is barely visible now, hidden behind overgrown shrubbery, its yellow siding that my parents had installed decades ago now dark with mold. There were several cars in the drive and parked in the turnaround out front, so I quickly took a few photos, then drove down to the lake where I’d learned to swim and skate. It was clogged with algae and lily pads, no longer a place that anyone would dip a toe. Boaters were warned to proceed at their own risk. All that’s left of the large weeping willow that was planted when I was a kid is a ragged stump that looks like the remains of a lightening strike. There are weathered picnic tables and a playscape to one side, and the tennis court that used to be reserved for men only after they came home from their New York City train commutes, but the only signs of life, other than the aquatic, was a lot of Canada geese poop. Down the road from the path to the lake was a home with huge blue flags declaring the election victory of the former guy. It was time leave.

On my way out of town, I stopped at an roadside diner that used to be a favorite place for occasional dinners out. There are no longer any jukeboxes at the booths, and the restaurant has expanded well beyond its original blue diner car footprint, but the inside is authentic retro from back in the day, my hearty brunch was great, and it only cost twelve bucks.

Three-plus hours later, I walked in the door and found my husband decorating our pine-bough-covered sukkah, in preparation for the Jewish festival of Sukkot. Later that evening, after we’d finished eating out in the sukkah, I leaned back in my chair and studied the gourds that Al had hung from the lattice roof and smelled the pine boughs and was just grateful to be back 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: mindfulness, resilience, travel, vacation

The Heart of the Matter

Evelyn Herwitz · October 4, 2022 · 4 Comments

So, things have gotten a bit more complicated health-wise. For more than a decade, maybe 15 years, I’ve occasionally had an espisode when I’ve pushed myself to exert physically—running through Penn Station in New York to catch a train, hustling through a huge international airport to make a flight connection—and have gotten weirdly out of breath. Not the normal huffing and puffing from running, but actually finding it hard to breathe. And for all these years, the working hypothesis has been that I have exercise/stress-induced pulmonary hypertension (PH).

PH is a known late stage complication of scleroderma, and my cardiologist has monitored me for a long time via regular echocardiograms, which have shown normal pulmonary pressures, for the most part. I’ve also had many, many pulmonary function tests over the years to check my lung capacity and diffusion rate. But over the past year, in particular, these episodes have happened more frequently, with the added bonus of feeling like I’m going to pass out. Fortunately, that has never happened. But it’s become quite worrisome. I’ve also had a heart arrhythmia for many years that has gotten more pronounced.

So, I’ve had a series of heart diagnostics, including a Holter monitor study, a heart MRI, an echocardiogram stress test, and a couple of weeks ago, the gold standard for PH, a right heart catheter stress test. This was not fun. It involves having a catheter inserted into the vein on the right side of your neck, which is then threaded into your heart and the pulmonary artery to the lungs. Your mouth and nose are covered with a tight mask and breathing tube, which collects data on carbon dioxide exhalation, and you have to pedal a recumbent bicycle until you can’t anymore. I lasted about four minutes before my breathing became difficult.

After three conversations with three of my specialists (PH pulmonologist, rheumatologist, cardiologist), the diagnosis is clear. I have Type 2 exercise/stress-induced pulmonary hypertension. Unlike Type 1, which involves changes to the pulmonary artery, Type 2 involves stiffening of muscle on the heart’s left side. Basically, as I understand it (and it’s taken some time to wrap my head around all this), when I exert too fast or get really stressed, my blood pressure spikes, my heart rate increases, and although my heart does a great job of contracting to pump blood to my lungs, it cannot relax readily—kind of like a clenched fist that can’t easily release—which then causes my pulmonary pressures to spike, some fluids to leak into my lungs, and the shortness of breath and near fainting.

It’s a lot. The standard treatment is to go on a diuretic, which is what my new pulmonologist prescribed, with follow-up blood work and appointments to monitor potassium levels and how I’m doing. However, and here is one of the big lessons of this experience: while very knowledgeable, my new pulmonologist doesn’t know me, yet, and we didn’t have enough time to talk, due to her schedule getting backed up, so I never got to ask a basic question. If I have Sjogren’s, which causes severe dry eyes and mouth, how would a diuretic affect me? Also, she only read the most recent stress test results, and not the rest of my heart work-up.

So when I saw my long-time cardiologist the next day, I asked him, and he nixed that plan and put me on a calcium channel blocker. He said my other heart diagnostics had shown I am not retaining fluids in my heart, and a diuretic like Lasix, which she had prescribed, would probably leave me feeling pretty crummy and dehydrated. The calcium channel blocker is supposed to relax my heart, lower my blood pressure (which has been all over the place) and slow my heart beat, also possibly ease some of the arrhythmia.

Even on the first day of taking my new medication, which is time-released over 24 hours, I began to feel better. Only had a slight headache, and by day two, that was not noticeable. By weekend’s end, I was marveling at the fact that my heartbeat seems to have faded into the background, for the most part, and is not demanding attention as it has been for months now. So, off to a promising start.

I’ve chosen not to write about this until I had a clear diagnosis and some answers. There is no way to know, without a heart biopsy, which I have no intention of doing since the information wouldn’t change my treatment plan, whether scleroderma is the cause of the stiffening of my heart. But it’s likely a culprit. No cure. My approach is to work with my team on the right balance of medication, increase my aerobic exercise as tolerable, and also try yoga to see if it helps me with meditative breathing, strength and flexibility.

I’d be lying if I didn’t admit it’s been scary. The diagnosis last week was quite sobering. I’m grateful for my medical team, and that I have a very experienced and knowledgeable cardiologist who really respects me and knows my history. He also has the calmest voice and manner, which was incredibly soothing when we met on Friday. Scleroderma is complicated. You have to advocate for yourself and build a trusting relationship with medical professionals. And while there is no cure, yet, there is medication that certainly helps.

There is also a lot I can do to give myself the best odds of managing this evolving disease process. That’s been my strategy for the past four decades—living with scleroderma, not letting it run my life. And that’s what I intend to continue doing.

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: Jamie Street

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Filed Under: Body, Mind Tagged With: managing chronic disease, mindfulness, pulmonary hypertension, resilience

New Tree, New Year

Evelyn Herwitz · September 27, 2022 · 2 Comments

Friday afternoon, we planted a new tree in our front yard. Ever since our city-owned Norway maple dropped a huge limb across the street this summer, I’ve wanted to make up for the loss. So we are now the proud parents of a persimmon sapling, which will (we hope) bear some tasty fruit in three to four years.

It seems a fitting way to begin the fall season—and a fitting way to mark the Jewish New Year, Rosh Hashanah, which began Sunday evening and continues until sundown tonight.

Planting a tree suggests many metaphors, for life, for abundance, for repairing our world. On a more personal level, I just happen to be a tree lover. The variety of species, alone, never ceases to amaze me or to remind me of the incredible diversity that makes our world so exquisite. Our persimmon has smooth, shiny green leaves that will turn a deep orange later in the season. When mature, it will reach ten to twelve feet in height and crown diameter.

Soon enough it will be whipped by wind and snow, but our landscaper, who specializes in sustainable, edible plantings that are appropriate for our region, assures me that it will sprout stronger roots in response to whatever fall and winter bring. So I will soak it twice a week and undoubtedly worry if the weather turns harsh and watch it adapt and grow.

It’s hard to believe that such a thin stalk will provide shade and food in a few years. But the act of planting a tree is an act of hope. And so, Dear Reader, whenever and however you mark the year’s turn, take heart. And consider planting your own tree.

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

Almost Autumn

Evelyn Herwitz · September 6, 2022 · 2 Comments

With Labor Day behind us and schools here already in session, it’s starting to feel like fall. The maples on our street began to drop leaves, a few at a time, in mid-August. A week post our vacation, the days are noticeably shorter, with sunset at about quarter past seven.

I find this time of year bittersweet. It’s hard to let go of summer, even as it’s a relief to be out of the 90+ degree Fahrenheit heat wave and soupy humidity of the weeks before our travels. At the same time, with schools in session, everyone back from vacations, and the Jewish New Year right around the corner, fall is always about new beginnings. Even as trees go bare, they are storing sugar for the long winter ahead and forming new buds.

We have one more big family celebration coming up this weekend, and then it’s time to focus, once again, on work and writing and election season, on putting away summer clothes and getting back into layers, on birds migrating south and trees hardening off. I’ve gotten away with only my thumbs in bandages for several months, and I know that is about to change as the temperatures drop and more ulcers appear. So it goes.

To everything there is a season . . .

(Click the link, above, if you can’t see the embedded video of Turn! Turn! Turn! with Judy Collins and Pete Seeger.)

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, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience

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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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Recent Posts

  • Drips and Drops
  • Out of Focus
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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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