Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

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

Purple Thumb Challenge

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I have never been good at keeping houseplants. I’m most successful with forgiving plants that don’t need much water or attention, like the snake plant that lives on our kitchen table. Every few weeks I remember to soak it in the kitchen sink, give it a good misting, and then leave it be until the next time I remember. It never seems to mind.

All that is about to change. For a combined birthday-Mother’s Day gift this year, Al surprised me with a trip to a bonsai greenhouse last month. I walked around all the many different bonsai trees for sale, but didn’t see one that really struck my fancy. Speaking with one of the staff, however, we found out that I could take a workshop and start my own.

Of all the suitable species, I was most taken by a tree with very delicate, compound leaves that looked like tiny water droplets. This, we learned, was a Brazilian Rain Tree. The greenhouse had an exquisite specimen that turned out to be 75 years old. Something to aspire to, certainly. They were getting a new shipment in mid-June, so I signed up for a workshop on Father’s Day. Al was happy to come along and watch.

Meanwhile, I bought a book about bonsai to learn more. And discovered how much care is actually involved. Bonsai need daily watering and lots of attention. It’s a bit daunting for someone with a purple thumb. But I’m intrigued by the artistry that’s involved to train a tree, in miniature, into a living sculpture that honors nature.

So, on Sunday, we went to the workshop. I found a little Brazilian Rain Tree and a pretty terracotta pot, and following our teacher’s instructions, set to work.

You must first set up the pot with wires and a piece of mesh in the bottom—the wires are used to hold the bonsai roots in the shallow pot. Then you add a layer of very porous bonsai soil. Next comes removing the tree from its pot. You have to clear part of the topsoil to reveal some of the roots—this is essential to bonsai aesthetics—then poke away soil that is entwined with about two-thirds of the lower root system, and trim back the longest roots.

Then you place the tree in the pot and spread out the remaining root system, twist the wires in place to stabilize the tree, and fill the rest of the pot with more topsoil. My teacher had to help me with some of this, because my hands aren’t quite strong enough. But I did much of the prep.

Then came some pruning (Brazilian Rain Trees have thorns) and learning how to clip away deadwood. The next-to-last step involved wrapping a bendable wire around the trunk and up one branch that we bent into a curving upright stance—to train it as an apex for the tree’s eventual shape. Most of this I was able to do myself.

Now it was time to soak it with water, essential for my little tree’s survival. And it was done. I was really pleased with the result. And hoping I wouldn’t kill it.

Back home, all afternoon and evening, I kept checking the soil to see if it needed more water. Then I started to worry, because its leaves were no longer open to the light, but seemed to be drooping. Fortunately, a quick bit of Internet research revealed that Brazilian Rain Trees close their leaves in diminished light and at night, and open them in the day. So far, so good.

And so, I begin my adventure as a bonsai gardener. I understand this can become quite an addictive pastime. Already I feel a special relationship to my little tree and look forward to tending it and watching it grow. With persistence and some luck, maybe I’ll turn my purple thumb green, after all.

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

Line of Sight

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A few weeks ago, when I had my eyes dilated during my annual exam at a local optometry college, I learned some surprising news. Despite the fact that I have very dry eyes from Sjogren’s Syndrome, I might actually be able to wear contact lenses.

These are not your normal contacts, but scleral contact lenses, typically prescribed for people with irregular corneas. They are gas-permeable, but larger and lofted higher than regular contacts, essentially floating on a saline solution over the entire cornea and resting slightly beyond the iris on the white of the eye. For people with severe dry eyes, like me, they can provide constant lubrication.

So, I decided to find out more. Last Thursday, I went back to the college—which operates a teaching optometry clinic—and met with one of their dry eye faculty specialists, along with a fourth year student. Another fourth year student ended up joining us, because she had written her first year research paper on scleroderma.

There were two major questions to answer: First, could we actually get a pair of sample scleral contacts into my eyes; second, would my hands enable me to do this for myself? The lenses are inserted using a little plunger. You fill the lens with solution and then bring your eye down to it. Not an easy feat. It took three tries on each eye by the specialist, with me holding down my lower lid and him holding the upper lid and the lens-with-plunger, to get it in. But we did it.

Miraculously, I could see more clearly, just because of the moisture being trapped by the lenses, even as they were not prescription. However, the big challenge is that my upper eyelids are abnormally thick from scleroderma. Hard enough for two people to insert the contacts. Also, I could feel the lenses underneath my upper lids when I blinked—possibly because my eyelids are less flexible. And they burned a little, possibly because the whites of my eyes were drier since I didn’t need to blink as often as I normally do.

We were all excited that I could actually wear them, but this is far from a home run. The specialist gave me a 50:50 chance of eventual success, but wanted to go the distance if I was willing. There are a lot of customized adjustments he can make to the size and shape of the lenses, as well as a special coating that will keep the outside wetter and less irritating to my inner eyelid. There are also a lot of adaptive tools to enable me to insert them myself. But we’ll only know with the real thing.

Fortunately, with these lenses, there is a try-out period, and if they don’t work, I could return them for a full refund as well as a partial refund of the exam fee. The clinic staff will research whether this is covered by Medicare and my Medex plan. I have no idea if it will be successful, but I feel like it’s worth a try, because if it does work, my eyes will be healthier and vision much clearer than I thought possible.

In the meantime, the students are learning a lot from our meeting. As the lead student said to me, “I have a million questions going through my head.” “Fire away,” I answered. At the very least, whatever happens, he’ll know how to better diagnose someone with my complex issues in the future. Well worth the time.

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: Siora Photography

Touchy Choices

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I’ve been venturing out a bit more, lately, for various appointments. Wearing a mask in public is both required here in Massachusetts and a no-brainer, for my own health and those around me. But I’m debating whether I always need my second level of protection against Covid: disposable gloves.

I have a stash of gloves that I use for cooking, because I learned long ago that touching raw food with bare hands is an invitation to infected ulcers. So now the question is whether I need to wear them whenever I go out to a place where I may have to purchase something in Covid Time.

Here’s the problem: Inevitably, with credit card terminals, you have to push a button on the screen or use the pen device to do same. I really, really don’t want to touch any surface that’s been touched by so many fingers. Even the most conscientious sales clerk doesn’t sanitize the terminal regularly.

My default up to now has been to go for the extra protection and wear gloves. But sometimes it seems like overkill, and it’s also not great from an environmental standpoint to use all of those disposables that will live forever in a landfill. So this Monday, when I had a meeting that didn’t involve any financial transactions, I skipped the gloves. When I opened the doors to the office building, I pulled my sweater sleeve over my hand so I didn’t have to touch it. I was vigilant about not touching other surfaces. And when I was all through and back in my car, I used hand sanitizer.

Here’s hoping I didn’t miss a step. The whole thought process for a simple trip beyond my home safety zone requires so much concentration, being very mindful of everything I touch to avoid the virus. On the one hand, given my Covid protection protocols, I’m probably at less risk than ever of picking up an infection in one of my digital ulcers. On the other, I’ve still had a few minor infections that I could handle with topical ointment, and one major infection several months ago from having to go gloveless to a medical appointment in a local hospital, per their regulations.

So it goes. I hope you, too, Dear Reader, are doing all you can to keep yourself and your loved ones and anyone else with whom you come in close contact healthy and safe.

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: Emin BAYCAN