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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Guinea Pig

Evelyn Herwitz · November 1, 2022 · 2 Comments

Over the four decades I’ve had scleroderma, I have occasionally participated in research. One of the first studies I signed up for was in the mid-’90s, a trial of medications for Raynaud’s at Boston Medical Center. It was a randomized double-blind study that involved taking a daily pill, recording my experience with Raynaud’s in a journal, and coming to BMC every so often for a check-up with the lead investigator, the late Dr. Joseph Korn. Dr. Korn was responsible for BMC becoming a research center for scleroderma, and his successor, Dr. Robert Simms, became my rheumatologist until his retirement a few years ago.

Which is to say that, even though I’m pretty sure I got the placebo in the Raynaud’s study (no improvement), the long-term benefit was that I ended up being treated by one of the top scleroderma rheumatologists in the U.S. as a result of my participation. I also realized, after driving into Boston on a semi-regular basis, that I could expand my options for work to include that city. Indeed, within about a year, I landed a job as marketing director at a small college in a Boston suburb, a position I held for a dozen years.

Even before the Raynaud’s study, I contributed tissue samples from my placenta after my younger daughter was born to researchers at the University of Pittsburgh. My hands have been photographed and written up in medical journals. For several years, I participated in Grand Rounds at BMC, to help educate young medical students about scleroderma. And I’ve served in a focus group to test intake forms for patients with scleroderma.

I’ve also given blood work for various studies over the years, though I draw the line when it comes to tissue samples from my hands. Given my history with ulcers and long healing times, I don’t want to aggravate my hands more than necessary, even for science.

Most recently, last week I received a call from the cardiology fellow who helped administer my right heart catheter stress test for pulmonary hypertension, to ask if I’d be interested in participating in a study of a non-invasive version of that test. The investigators want to know if a stress test that takes measurements using an MRI would be as accurate as the invasive version that I did. I said I’d be willing to do it, but in a few months. I just need a break from all the measuring. But I do want to help, especially if it means sparing others from the heart cath version, which, as I’ve written here, is no fun.

The other study I’m participating in currently is about cognition (related to aging, as opposed to scleroderma). This one involves playing a video game on an iPad at least once a month for a year. You have to do a variety of tasks that require you to navigate an obstacle course while capturing certain shapes. Conceptually, it’s straightforward, and I do okay. No decline, at least, in my scores. But the problem with the game itself is that it requires manual dexterity that I do not have. So it’s not really measuring my cognition as much as my ability to manipulate my fingers. I’ve mentioned this to the researchers, and they’re aware of the issue. But I’ll continue, anyway.

I write this not to pat myself on the back, but to encourage all of you who are able to take the time, to consider participating in scleroderma research. We’re a relatively small cohort, and whatever information researchers can glean from our experiences will help move us closer to a cure. It’s often easy, and the personal benefits—as I found with the Raynaud’s study— can be significant. If you are not being seen at a research center, as I am, you can find more about studies looking for participants on the Scleroderma Research Foundation website.

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: Bonnie Kittle

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, hand surgery, managing chronic disease, Raynaud's, resilience, scleroderma research

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

Beautiful

Evelyn Herwitz · September 20, 2022 · Leave a Comment

One of the scariest aspects of a scleroderma diagnosis is to realize how deforming this disease can be. Everyone is different, and how your body changes will be unique to you. Early on in my progression, the skin on my face became so tight that I began to have discomfort blinking. For some, this facial tightening can make it impossible to close lips over teeth. It can reduce your hands to look clawed. At its most virulent, it can make obvious the skeleton beneath.

For all those who live with scleroderma, this is a terrifying prospect. For women, especially, among whom the disease is four times more prevalent, and especially for young women, it can be a harsh sentence in a culture that puts such a premium on youth and physical perfection, narrowly defined.

I have been extremely fortunate that, over the forty-plus years I’ve lived with scleroderma, my skin loosened. I credit the use of D-penicillamine, with which I was initially treated. Six months after I started taking the medication, I began to once again have face wrinkles. Therapies have advanced significantly since then.

Nonetheless, my skin is still not normal on my face, particularly around my mouth and eyelids, and in my fingertips. It has been a long adjustment to aging prematurely. That is why I found this interview with Chloé Cooper Jones, author of the recent memoir Easy Beauty, to be so apt and powerful.

Cooper Jones, who was born with a rare congenital condition called sacral agenisis, has spent her life living with reactions to her visibly disabled body. A writer and philosopher, she explains the difference between the kind of beauty that seems obvious (a sunset, a Monet painting) and that which is more complex and difficult. Her conversation with sociologist and writer Tressie McMillan Cottom delves into the ways we define beauty, what makes beauty intrinsic, and how we view and live with disability.

It is insightful and inspiring. It’s given me some needed perspective as my body continues to age and I contend with my own scleroderma. I hope it does for you, too.

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: davisuko

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: beauty, body image, body-mind balance, hands, managing chronic disease, resilience

Things That Go Bump in the Night

Evelyn Herwitz · September 13, 2022 · 2 Comments

Returning Sunday afternoon from a four-day weekend in Raleigh, North Carolina, for a very sweet family wedding and a celebration of our elder daughter’s birthday with friends and family, I was exhausted. It was our second trip in just two weeks, and per usual, I managed all the logistics—which I enjoy doing and am good at, but there’s always a lot to track. So, it was great to get home, with no more responsibilities for anyone else, and go to bed early.

I slept for ten hours. At some point, maybe around 3:00 a.m., I suddenly woke because I thought I heard a loud musical note. Yes, I know, that sounds weird. It was. Some kind of plucking of a stringed instrument or a bell or what, I can’t recall. But it was quite distinctive. I became conscious enough to realize I’d imagined it and, thankfully, went back to sleep.

This is not the first time I’ve woken from a loud noise that wasn’t there. Occasionally I’ve roused because I’m sure the telephone rang (we still have a landline, believe it or not). Then I’ll realize it didn’t and go back to sleep.

So, after Sunday night’s weirdness, I looked online for hearing loud noises in your sleep. And, sure enough, the phenomenon is real. In fact, it has a very evocative name: Exploding Head Syndrome (EHS).

No one knows what causes EHS, but apparently it is more common among women. It doesn’t harm your health, and there is no known cure. It may be triggered by fatigue and stress. It also may be related to damage or dysfunction of the inner ear, which, in my case, seems a possibility, given that we had just flown, which affects pressure in my ears, I have occasional episodes of vertigo due to loose crystals in my inner ear, and have had tinnitus in both ears for decades.

In any case, at least now I know what’s going on. And given all the distressing craziness of our world these days, knowing that my head actually is exploding surely fits the moment.

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: David Matos

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

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

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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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