Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Stepping Out

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Al and I didn’t have any plans for July 4th. The weather was chilly and rainy on Saturday, and more of the same was predicted for Sunday. But we lucked out. Sunday was still overcast, but no rain predicted. So, on a whim, we set out for Newport, R.I., for the afternoon. I hadn’t done the Cliff Walk along all the famous seaside mansions in many years, and Al suggested we also visit the Green Animals Topiary Garden, which I’d never seen.

The topiary and flowers were stunning, and their scent, so sweet and relaxing. Even as my feet were really tired by the end of the Cliff Walk, the views were well worth the trek. By late afternoon, the sun came out. We finished off the day with a delicious Italian dinner, not far, we discovered, from St. Mary’s Parish, where John and Jacqueline Kennedy were married in 1953.

Wherever we went, we heard and saw people from many different countries and backgrounds, the wonderful, rich mix of cultures that makes America truly great. As we drove home, fireworks bloomed on the horizon. A perfect Independence Day.

Profound thanks to all who have worked so hard to get us through the pandemic, so we can feel safe going out again. Vaccines work. Happy Summer. 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.

Inclination

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I was chatting with a neighbor the other day, a geographer who studies the impact of climate change, and he told me that in twenty years, Massachusetts may well have weather more like Virginia’s, and Maine will be more like Massachusetts. Certainly feels that way here in Central New England over the past few days, with temperatures hovering around 90° F.

The one advantage for me, personally, is that my spring digital ulcers are finally healing in the heat (with some help from a round of antibiotics). As long as it’s not humid, or so hot that I must relent and turn on the A/C, I flourish in this weather.

So, despite the temperature, on Saturday afternoon, I walked to a nearby park in our fair city, a green oasis in the midst of traffic and stores and homes and apartments. I’ve been trying to build up my physical stamina on this three-mile route, which includes following a circular, inclined path that winds up a hill—a drumlin, geologically speaking, an oval mound of moraine left behind by a receding glacier millennia ago—to a clearing at the top, where there’s a flagpole and some granite benches. I made it without stopping to catch my breath, this time, an accomplishment. A pleasant breeze and the canopy of trees kept me comfortable along the way.

As I walked the spiraling trail, I recalled something from high school physics, how the angle of an inclined plane affects the amount of effort it takes to move an object upward. The trail’s gradual slope was a perfect example. There were a number of detours, paths that led more sharply up to the top, which I avoided, because they would have required too much exertion. No, I just kept walking gradually higher around the hill, which enabled me to maintain an even stride, manage my breathing, and keep going.

At the flagpole clearing, I rested on a bench and watched a jet high above, tracing a line that disappeared behind a large cumulus cloud, waiting for it to reappear as it flew farther west. I listened to the hum of traffic below, beyond the trees, and a loud voice on a speaker somewhere ranting about something. I hummed a melody and waited for my heart to stop pounding from the climb, gradual as it was. I inhaled the fragrance of flowering trees and evergreens. I wondered who came up here to mow the grass. I prayed for insight about our troubled country and planet and how to find my role in all of this. I left when the jet disappeared behind another cloud, and began my gradual descent.

I didn’t get any big answers to those big questions, which hover in my mind every day. But the spiraling walk up the mound-print of an ancient glacier has given me an inkling—that for all the valid urgency of the present moment, there is also value to patient inquiry, to slow and steady progress, to finding answers that stand the test of time. For one who needs to conserve energy on the climb, as age and scleroderma dictate, that’s the path I’m inclined to follow.

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: Zoltan Rakottyai

Tunnel’s End

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On Saturday, May 29, Massachusetts lifted most of our pandemic restrictions. In celebration, the TD Garden was packed for the playoff game between the Boston Bruins and the New York Islanders—which the Bruins won handily, 5-2.

I am not an ice hockey fan, nor would I feel safe going to an indoor arena filled to capacity, regardless of the sport. Too big a risk, too soon, in too huge a crowd. Outdoors, however, for a baseball game in good weather at the new Minor League stadium in our fair city, yes. Looking forward to that sometime in the not-too-distant future.

A week past Al’s clearance from Covid quarantine (he caught a mild case despite being immunized), we’re both doing fine, thank goodness. And the fact that I never caught it from him, due to the vaccine, has definitely given me more confidence—enough to venture indoors to a restaurant with my daughters on Sunday for a belated Mother’s Day meal. Our eldest has been immunized for months, and our youngest was finally able to get both Moderna vaccinations from the university where she works near Philly. So she came for a long Memorial Day weekend, and the three of us had a ladies’ luncheon, their treat.

It was great to get together, and it was also great to sit in a restaurant without worrying about taking off my mask. The place was busy, plenty of people, but still some spacing between tables. We sat near glass doors that did not close completely, so we also had a source of fresh air.

What surprised me was how close to normal it seemed. The waitstaff were still in masks and gloves, which I appreciated. But otherwise it felt like it’s always felt to eat out. Our focus was on the food and conversation, not on any worries about safety. I will be thrilled to put my mask collection away sometime over the summer, when the data confirms the wisdom of eased restrictions, as cases and deaths continue to decline with increased vaccination rates.

Al’s situation going forward is a bit uncertain, however. Given that his immune system is somewhat compromised, we need medical guidance about when/if it would be truly safe for him to go unmasked in crowds. Does the fact that he caught mild Covid and recovered after being fully immunized actually add to his protection? Or does it all depend on the variants that are still evolving? We don’t know, but I hope to get answers soon.

Our experience over the past couple of weeks is just one small example of how vigilance remains essential for those at greater risk, even as the light at the tunnel’s end is now visible. Memorial Day commemorates fallen soldiers, but we’d also do well to remember the 594 thousand Americans who have died from Covid since the pandemic began over a year ago. That’s more than the total number of soldiers who died in World War I, World War II and Vietnam, and on 9/11. And there are still people hospitalized and dying from this terrible disease.

As we venture out of our Covid cocoons, even as we revel in unmasked spaces, I profoundly hope and pray that the majority of my fellow citizens have learned to be more thoughtful about the health and well-being of others still at risk. Please get the vaccine if you are able and have not already, so that this very dark chapter can finally close and we can all, at last, safely move forward.

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: Robert Bye

This Is a Test

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Last week, our home became a testing ground for the efficacy of Covid vaccines. Al was vaccinated back in February, and I was fully immunized by the first week of April. He got Pfizer, and I got Moderna. We’ve been feeling quite confident and relieved since then, although we both still mask in public, as required.

However, for much of April and May, Al has been coughing. At first, I thought it was just a morning thing, but right after Mother’s Day, his cough got worse. By the next weekend, he was clearly not feeling well. No fever, but I suspected bronchitis. So a week ago Monday, he went to the doctor. Sure enough, he had Covid. While he could walk outside and even ride his bike if he wanted, he could not be around other people (except me) and had to work from home.

I, in turn, had a Covid test the day after Al was diagnosed, and was—thank goodness—negative. I took over all the grocery shopping, errands, and meal prep, which we usually share. I’ve felt fine the whole time.

Fortunately, his symptoms steadily improved. He never lost his sense of smell or taste. As all the research has shown so far, the vaccine most likely spared him from a severe case of the virus. By the end of the week, he was hardly coughing at all, and yesterday, he was cleared to be out of self-quarantine.

He was called twice by the Massachusetts Covid contact tracing team, to see how he was doing. We had already notified everyone we had been in contact with in the recent past. But I was impressed by their follow-up and grateful that we have a good system in place here.

So, how is it that Al caught the virus, even though he was fully immunized? Chances are because he doesn’t have a spleen, which is a critical organ in the body’s immune system. Years ago, when we were first married, he contracted a severe case of mononucleosis—not a terribly big deal for young people, but quite a big deal for a 35-year-old man. His spleen ruptured and had to be surgically removed. He came home from the hospital the day before our first wedding anniversary.

While bone marrow compensates for the spleen in a case like Al’s, I am making an educated guess (no research at present to define the relationship between lack of a spleen and Covid vaccine efficacy) that he probably has not been able to produce the full level of antibodies in response to the vaccine. However, current research does indicate that even in breakthrough cases like Al’s, he both had a milder case and also shed less of the virus because he was fully vaccinated. And apparently, my vaccinations have given me enough protection for whatever I was exposed to. Thank God.

I shudder to think what might have happened if he had be infected before being vaccinated. He is more vulnerable than either of us realized. Which also goes to demonstrate how effective masking and basic public health measures are in protecting us all.

Moral of the story: Vaccines do work, even if not perfectly. We dodged a big bullet. And I am very grateful that we’re both okay, as well as others we saw recently. If you haven’t been vaccinated yet, please—for you own sake and those you love—go get it. And be sure to exercise caution around others who may have compromised immune systems, regardless of your immunization status. We truly are still all in this together.

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: Mufid Majnun

Nosebleed Section

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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.