Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Reality Check

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This past week of news about the Delta variant and breakthrough Covid infections for people who are fully vaccinated has caused me to reassess. A study released last week by Israeli scientists about the effectiveness of the Pfizer vaccine indicates that, while it remains a strong shield against severe Covid, it is just 39 percent effective against infections from Delta. The data sample is much smaller than an earlier Israeli study of the vaccine’s effectiveness (which found Pfizer to be 95 percent back in January), but the implications are certainly worrisome.

For the unvaccinated among us, Delta is a true health risk. It is highly contagious, transmitting a thousand times the viral load of earlier variants and has a shorter incubation period. The vast majority of people now hospitalized with Covid in the U.S. are unvaccinated, and infection rates are on the rise again throughout the U.S., particularly in regions where people have been averse to vaccination.

But breakthrough cases worldwide are on the uptick, too. Last week, the Dutch equivalent to our CDC reported that 9 percent of all Covid cases recorded in the Netherlands were among fully vaccinated individuals, and 14 percent of the cases involved people who were partially vaccinated. Note, too, that the fully vaccinated can still transmit the Delta variant without knowing it, if they are asymptomatic, increasing risks to the unvaccinated.

Again, the main vaccines here in the U.S. remain effective against severe Covid, thank goodness. But I have also read of people getting Covid when fully vaccinated who get sick enough to be out for a week, or who lose sense of smell and taste. “Mild” Covid is still no picnic.

All of this leads me to be more cautious, once again. So frustrating, just as we were all just beginning to feel relieved this summer. But I’m back to wearing a mask in stores and avoiding indoor restaurant seating. If we make it to a baseball game or other crowded outdoor venue, I’ll be wearing a mask in the stadium, because there will be no way to socially distance from other fans. No airplane trips in my immediate future. If, as is now being discussed, those of us 65 and older are advised to get a booster shot—effectively a third dose of Moderna, for me—I will be first in line.

Like it or not, we’re all in this together. I need to protect myself, my family and friends, and strangers, too. Stay safe out there.

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: Donald Giannatti

Fear of Flying

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I subscribe to a great travel website, Scott’s Cheap Flights, that lists best airfares on reliable carriers for international travel. Lately, more and more destination deals are landing in my in-box, and Scott’s has consistently published flights with good cancellation policies during the pandemic.

But I’m still not ready to make any long-distance vacation plans. Not for this summer, anyway. I have my sights set on October, when I suspect the Delta variant will be better understood and any new rounds of restrictions will be in place. But who knows? I’ve read about even more variants emerging. The real question is whether the vaccines continue to hold up, which so far, they have, thank goodness.

It’s easy to fall into a default of staying put. As Delta surges in communities that have resisted the vaccine, and as vaccine rollout around the world remains much slower than in wealthier countries like the U.S., which have more resources to purchase doses, there are more chances for this opportunistic virus to morph into more resistant strains. We’re in the midst of a huge public health experiment, if you will, without consistent vaccine protocols and availability worldwide. The risks remain very real. I am convinced we will be living with some form of Covid for many years to come, though I hope it will eventually become endemic, just as the Spanish influenza pandemic of 1918 was the precursor of the flu we all have learned to live with. Vaccines are key.

But I also don’t want to become so fearful that I never get on a plane again. Obnoxious passengers who delay flights because they refuse to cooperate with mask mandates are an unpleasant prospect, certainly. Can’t let them control the skies. My strategy at present is to start researching a prospective trip in August for October, make sure I find flights and places to stay with flexible cancellation policies, travel only to locations where Covid rates are under control and good medical care is available, and to get comprehensive travel insurance.

I’ve made the leap of getting out in public without a mask where CDC and Massachusetts guidelines allow, have even begun eating inside in restaurants, again. It’s time to start dreaming of visiting far-away places, with reasonable precautions. We’re blessed with the resources to make this happen. Now I have to push farther out of my “comfort” zone and just do it.

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: Dariusz Sankowski

Time Warp

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Years ago, when our daughters were young, we used to vacation every summer on Block Island, off the Rhode Island coast. Back then, it was still affordable to rent a cottage for a week. The island was quaint, quiet, family friendly, with lovely beaches and nature trails to explore.

Thirty some-odd years later, other than real estate prices, which average in the millions of dollars, and very expensive rentals, the island remains in many ways frozen in time, with much open space still protected by the Nature Conservancy. As you approach on the ferry from Point Judith, the waterfront looks almost exactly as it did on our first arrival, when our eldest was barely three years old.

So it was on Sunday, when the four of us made a day trip to Block Island together for the first time in about ten years. There is something immediately calming as the ferry backs into its dock, to see all the familiar old hotels and the flag gaily waving atop the cupola of the National. We had planned a weekend on the Block last summer, and I’d rented a great house and secured our ferry car reservation, when, of course, the pandemic scuttled all that. While we couldn’t do a weekend this year, at least we could make a full day of it.

I’d originally hoped we could rent bikes to ride around to some of our favorite spots, but that was not to be. I haven’t ridden a bike in decades, and when I tried one out, I could not balance—something to do with inner ear issues that have been plaguing me for several years, now. Mopeds, which we’ve always avoided, turned out to be not the best option, either (we did check them out, but decided to pass).

Instead, we found the most affordable alternative: walking and taking taxis. Our first stop was the town beach, where we ate lunch that we’d brought along, rested, swam (Al never misses an opportunity to jump in the waves), and walked the shore. As my eldest said, it’s just relaxing to lie there and listen to the surf and the friendly chatter, not too crowded, not too boisterous. Just families of all kinds, having a good time.

Then we caught a taxi to what’s known as “the Spit.” This is at the northernmost tip, near the North Light, where ocean currents from either side of the island slap together as waves cross paths, foaming and spuming. It’s a long, challenging walk for me from the parking lot over rocks and sand, but well worth the trek. Along the way, we were treated to a pair of fledgling, fluffy grey sea gulls, peeping to their mother, who kept close watch as they wandered near the dunes, and at least eight seals playing in the surf, popping their long black heads above the water before diving gracefully out of sight. We also harvested handfuls of sea glass.

On our taxi ride back into town, our friendly driver, who came to the island 42 years ago for a visit and decided to stay, slowed down to show us a pair of breeding ospreys. Our very first visit to the island in 1991 occurred in the midst of Hurricane Bob, which passed directly over. Turns out our driver was in charge of one of the evacuation sites during the storm, at the medical center. We had found shelter for the day at the only school on the island. So, we reminisced. Far from scaring us off, the hurricane only endeared us more to this special place. It was on that trip, as well, that I realized I was pregnant with our youngest, and Al and I joked giddily about names for the baby starting with B.

Sitting on the top deck of the eight o’clock ferry back to Point Judith, after a delicious fish dinner, the ritual visit to the Ice Cream Place, and noodling about the shops, we said goodbye to the North Light winking over the Spit as the sky turned dusky. Halfway on the hour’s crossing, just above the slate blue mainland, fireworks sparkled.

Magical, once again, if just for a day, to slip back to simpler times, with my dear ones.

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.

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.

Visual Acuity

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It’s been about six weeks since I tried a pair of scleral contacts—special lenses that can help people with irregular corneas or severely dry eyes. In my case, the issue is Sjogren’s Syndrome. It’s gotten so bad over decades that my vision deteriorates by mid afternoon, as my eyes get dryer. Eye drops don’t seem to help that much.

So it has been a true miracle to discover the scleral lens option. When I wrote about this in May, my big accomplishment was being able to insert a sample pair with help from the wonderful faculty and students at our local college optometry clinic. A couple of weeks ago, I faced a second test: could I insert and remove them myself? The answer, after about a half hour of trying on each eye, was an amazing yes. Dr. S, who runs the dry eye teaching clinic, had given me 50:50 odds to set realistic expectations, and was even more excited than I was that I could do it.

With the lenses being fully refundable if I couldn’t manage or tolerate them on my own, I gave the green light to order a custom pair. Dr. S explained that fitting scleral lenses is an iterative process, like going to a tailor. There are many adjustments to make, in the loft of the lens above the cornea, which is filled with saline and moisturizes the eye, as well as the particular shape.

Last Friday, I went back to the clinic to try out my new lenses. This time, it took me only a half hour total to insert both, on my own, with guidance from one of the fourth year optometry students. The result, even as the left lens prescription needs to be strengthened and the fit of both lenses needs some tweaking, was nothing short of remarkable. I could see so much better.

At the end of my three-hour visit, at Dr. S’s request, I spoke to a group of the fourth year students about my experience with scleroderma and Sjogren’s. I’m always glad to teach, and it was the least I could do for the help and support they all are giving me. I’ll be back in a few weeks, when the next lens iteration arrives.

Meanwhile, I took the lenses home to build my skills with inserting and removing, and to help my eyes begin to heal. And I can see clearly—at a distance. In fact, I can see more clearly than I have at any time since I was a child who didn’t need glasses. Not only that, my eyes can tolerate a windy day and bright sunlight, which has bothered me for years due to dryness.

But it’s not a slam dunk. While it’s possible to create scleral lenses with an adjustment for bifocals, the result, I was advised, is often not successful. So these lenses only correct my myopia. I need reading glasses to see up close. Unfortunately, the lenses blur my vision for reading and the computer more than my natural sight.

Drugstore reading glasses present one solution—cheap, easy to get. But if you’ve ever used magnifying reading glasses, you know, as I’ve discovered, that when you turn your head, everything gets distorted. They also are clunky. I’ve found some online resources that I may try, with better options. I’m also debating whether to repurpose old lightweight frames as prescription reading glasses. This is all still new, and a lot to sort through.

Bottom line: While I was hoping to get out of glasses altogether, that’s actually not the main point of scleral lenses. They can save my eyes from further corneal damage. And I’m finding, on Day Two of wearing them on my own (four hours a day is the initial limit as my eyes adjust), that I have more tears after removing them for the day. I’m not sure why this is the case, but it’s an unanticipated plus. I’m also discovering how much I’ve been missing.

To say I’m grateful is an understatement.

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: Amber Flowers