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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Nosebleed Section

Evelyn Herwitz · May 11, 2021 · 1 Comment

There are many aspects of last week’s writing retreat in Maine that were wonderful: intense focus on my novel, no-one to answer to but myself, beautiful beaches to walk nearby, quiet. I made real progress and hit all my revision goals. There is still work to do, but in four-and-half concentrated days, I accomplished what would have probably taken me two months. By the time I left my little rented cottage on Friday morning, my brain was fried, but I was elated.

That is not to say, however, that the trip was free of interruptions. There was the SNAFU with non-functional WIFI for two days, which turned out to be mostly Spectrum’s fault. (Fortunately I had downloaded my manuscript from the cloud prior to leaving.) There was also the delivery of a new stove and refrigerator, which had been delayed by the pandemic. There was the owner’s angst over grease stains on the new kitchen rug, due to the aforementioned delivery. My experience writing in a news room decades ago came in handy, and I was able to ignore the commotion in the kitchen and still write while all that mishegas was going on.

Then there was the nosebleed. From time to time, because my nose is quite dry due to Sjogren’s Syndrome, which can often accompany scleroderma, I experience nasty nosebleeds. I’m careful with saline sprays and rinses to help keep my nasal passages moisturized. But it can get the better of me. The weekend before I left, I had a gusher on Sunday that took at least a half-hour to bring under control. Then, the Saturday before I left, I had another spontaneous nosebleed from the back of my nose, which took at least 45 minutes to stop.

Worried about the trip, I called my clinic to see if I should go to urgent care for an exam. The nurse took copious notes and checked with the covering physician, who said there was no point in being seen, since the bleeding had stopped, but to be sure to keep my nostrils moisturized. He said to beware of saline, which can also be drying (this I’ve also learned from experience), but added a tip: use a small amount of Vaseline inside each nostril. This sounded rather odd to me. I thought it might affect my breathing or sense of smell. But I decided to try it out.

To my amazement, the thin coating actually felt good. As I packed the next morning, I made sure to have my new little jar of Vaseline, plenty of cotton swabs and tissues, plus cotton balls and decongestant spray if I had another bad bleed. I was relieved to drive all the way to Maine, unpack, shop for food, and make supper without incident.

Just as I was doing my dishes, however, I suddenly felt the bleeding start again in the back of my right nostril. Though not quite as bad as the previous day, which involved both sides, it once again took at least 45 minutes to control. I was not happy. After calling Al to discuss options, and calling my clinic after hours, I was able to speak once again to a nurse who said if it happened overnight, I’d need to go to the nearest ER (15 minutes away in Portland). If I had another bleed in the day, I should go to urgent care. And when I got home, I should call my doc for an ENT referral.

I called Al back and told him I was going to power through this. “No way I’m going to let a f-ing nosebleed stop me from doing this after thinking about it for years and finally getting here!” I said. Thank goodness, the combination of Vaseline and sea air seemed to do the trick. Eight days later as I write, even in drier air back home, I haven’t had another episode.

And here’s the thing: I’ve had Sjogren’s for decades. I’ve seen ENTs before. I’ve dealt with many nosebleeds. No one ever told me about the Vaseline. If you have the same problem, I hope it helps.

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: body-mind balance, managing chronic disease, resilience, Sjogren's syndrome, travel, vacation

And Then the Clouds Lifted

Evelyn Herwitz · April 20, 2021 · 8 Comments

Sunday was my 67th birthday—or, as my eldest put it, the 33rd anniversary of my 34th. Sixty-seven doesn’t seem old anymore. While my body certainly doesn’t work as well as it once did, pre-scleroderma, and my memory is no longer as sharp, I don’t feel old. Wiser, I hope. Seasoned, certainly.

To celebrate that milestone, and the fact that both Al and I are now fully immunized against Covid (at least the original version), we spent the weekend in the White Mountains of New Hampshire. Decades ago, when we were first married, and later when our daughters were very young, we used to camp there for our summer vacation. I haven’t been back, since.

My inspiration for the trip was to see the stars from the Kancamangus Highway, which runs through the White Mountain National Forest. There are no interfering lights at night, and I can still recall the spectacular view from a visit more than 30 years ago. The weather, however, had other plans. It remained overcast throughout our trip, the sun finally breaking through on Sunday afternoon as we drove home.

But the day’s diffuse light cast its own spell, subtly revealing details otherwise missed. From Laconia’s lake shores to the Lincoln Trailhead in the White Mountain National Forest, from the Cog Rail part-way up Mount Washington to the Basin off the Franconia Notch Parkway, we immersed in rejuvenating beauty. As I reconciled myself to a birthday mountainside view shrouded in mist, the clouds suddenly lifted and we could see 80 miles. The perfect gift, and metaphor, after a long, long year.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, travel, vacation

Turtle Steps

Evelyn Herwitz · April 6, 2021 · Leave a Comment

I had to take myself by the hand to get outside on Monday afternoon. Not because it wasn’t sunny, because it was. Or really too cold, because it was 57°F, though there was a brisk breeze. Or same-old-same-old, because there was plenty to see—daffodils, crocuses, even some hyacinths in bloom; the crimson and chartreuse hint of new foliage on street maples; our neighbor’s fairy garden, which changes themes every few weeks. This afternoon, it featured painted eggs encircled by multi-colored pebbles.

No, my resistance was mainly to the idea of just getting up out of my chair and stepping out of my nice, warm house. Even as I am officially two weeks past my second Moderna vaccination as of Tuesday midday, it’s hard to shake my Covid habits of seclusion.

On Sunday, Al and I took a hike at a local state park, and I realized that it had been weeks since we’d gone out in the woods together. It’s been too cold or I’ve been too tired or just not inspired. As I walked around our neighborhood on Monday, it suddenly struck me that this was the first winter in decades that I have not put snow tires on my car. I simply haven’t needed them, because I haven’t been driving much at all. Introvert that I am, I’ve managed just fine working at home, as I have for the past decade, Zooming only online, and otherwise slowing way down when it comes to socializing.

But now, with spring and vaccines and longer daylight once again, getting out seems more possible. We have a weekend getaway planned for my birthday soon. I’m starting to daydream about more extensive travel in the fall, when we know more about variants and how long the vaccines protect us.

At the same time, I find myself hesitating. I’ve been living in my turtle shell for so many months, even with sporadic, small outings to see my doctors in person, or for occasional errands or hikes, that the idea of actually going out daily, like I used to, seems a bit intimidating. Will it really be safe? Do I want to expend all that energy running around again?

Just as I had to acclimate to confinement, I now have to re-acclimate to getting out in public. It will take me some time and practice. And experience, poking out my head, discovering that I can actually stay healthy with more exposure to more people, that I can put up with masking for however long it takes, and that there is still much joy to be found in our troubled, troubled world.

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: Joshua J. Cotten

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Filed Under: Body, Mind, Sight, Smell Tagged With: COVID-19, managing chronic disease, resilience, travel

Calculated Risks

Evelyn Herwitz · March 16, 2021 · 4 Comments

One year ago this past weekend, I was in Philadelphia, visiting our younger daughter. The world was just shutting down, but I made a decision to go, anyway, after consulting with my rheumatologist about Covid risks. Knowing what we do now, I may have made a different assessment. But I’m profoundly glad I went, for both of us. I was careful, we had a wonderful visit, and it made the ensuing months of separation somewhat easier to bear.

Every day, throughout this very long year, we’ve all had to make choices about risk of exposure to this deadly virus. I am profoundly grateful that our family has avoided any serious cases of Covid (so far—please, God, may it stay that way), although at least one of our relatives, who is a physician, probably contracted the virus early on, even as tests back then were negative. I still wonder if the very odd virus I caught at the end of January 2020 after attending a large celebration may have been Covid, because it swept through my entire system, drained me out, and took me three weeks to recover. When I mentioned symptoms at the time to one of my health care providers, she had no reference point.

Since I’ve been working for myself from home for 11 years, now, the transition to Covid Time has been relatively seamless. I’m an introvert at heart and do not feel the intense longing for in-person social gatherings that others express, even as I empathize. I find shopping in stores stressful and the masking hard on my breathing, given my decreased lung capacity from scleroderma. So my solution has been to shop online when possible and get out in the real world primarily by taking walks. Restaurants are still out of the question, as far as I’m concerned, and after the new variants emerged, I postponed a haircut until I’m fully vaccinated. Zoom meetings and FaceTime have long been part of my repertoire and make a huge difference in feeling connected to family and friends. As for doctor’s appointments, I consider telemedicine to be one of the true silver linings of this awful year.

For a while, when the weather was still warm enough, I enjoyed visiting outdoors with family and friends, safely distanced. I look forward to starting that up again in coming weeks. We have traveled once, last November, to Cape Cod, for a Covid-safe weekend at a B&B near the ocean. It was uplifting to walk the shore, but meals were a hassle, and it was not relaxing for me. The stress of all the precautions dampened the joy I usually experience by getting away. Still, it was worth it to see what’s possible.

Now I’m one week away from my second Moderna vaccine, a miracle. My Boston Medical rheumatologist told me last week that I’m already about 80 percent protected, and I’m beginning to feel my fear of this scourge easing. Nonetheless, I will still continue to err on the side of caution, until we know more about the variants and how the Moderna vaccine does or doesn’t protect against what may be deadlier strains. I expect to need a booster sometime later in the summer, and will gladly get that, as well.

Then, and only then, will I feel safe enough to fully re-engage with the world. In the meantime, I’m starting to dream again about travel. A year after my last plane flight, it at last feels possible, again.

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 Tagged With: COVID-19, managing chronic disease, resilience, travel, vacation

Respite

Evelyn Herwitz · November 10, 2020 · 1 Comment

To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for 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.

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

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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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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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