Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

scleral contact lenses

Dry Spell

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Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

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:  Petri Heiskanen

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

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