Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

dry eyes

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

See at Last

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There is nothing like a new pair of glasses with an accurate correction. For months, now, I have been tolerating slightly blurred vision, the aftermath of 60 dives in a Hyperbaric Oxygen chamber last fall to heal my hands from major surgery. This is a common side effect of the treatment, and, as predicted, after about three months, my sight returned to almost normal.

But the almost part was pretty frustrating—just blurred enough so I had trouble reading street signs, especially later in the day when my eyes are drier from Sjogren’s. In any kind of auditorium setting, I had trouble clearly discerning people’s faces or what was projected on the movie screen. I kept waiting for my vision to settle down, but it never went back to what it was prior to the HBO therapy.

So, it was high time a couple of weeks ago to get a check-up and new prescription. Unfortunately, our vision insurance only gives a discount on new frames every two years, and I had just gotten new glasses last summer. Fortunately, however, a local college here trains optometrists, and as long as you are willing to take the extra time for an exam by the students, you get a 50 percent discount on frames at the college’s frame shop—also a training venue. It’s a great deal, and well worth being a guinea pig for the students, who are lovely, very earnest and dedicated to getting it right.

I picked up my new frames last Thursday. They are wonderful. Not only can I once again see all the leaves on trees and easily read signs when I drive, but I am now enjoying transitional lenses, which turn amber-brown in the sunlight. My eyes are incredibly light sensitive due to Sjogren’s dryness, and I have constantly fumbled with switching from clear lenses to prescription sunglasses when going in and out of buildings on a sunny day. Now the lenses do the work for me.

I’m still getting new prescription sunglasses. The one hitch with transitional lenses is that they don’t get completely dark in warm weather. The optician explained that the lenses are temperature sensitive, as well, and turn their darkest in winter months. Given the heat we’re sweltering in lately, I need more visual protection for summer.

But I’m happy. I can finally see what I want to see again, without eyestrain or fatigue. What a blessing.

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 Credit: David Travis

Don’t Take No for an Answer

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Several months ago, I received a notice from the pharmacy that partners with our health insurance. They were no longer going to cover the Restasis eye drops I rely on for my Sjogren’s Syndrome dryness. Instead, I could substitute a prescription for Xiidra (ex-ID-ra). There was no explanation.

I called to be sure I understood. The customer service rep was snippy and dismissive. Still no explanation. I have extremely dry eyes, and it seemed as if there was no choice, so I contacted my optometrist and asked for a scrip for the new drops.

The first thing I noticed when I received the box of my new eye medicine was that the active ingredients are completely different. The second thing I noticed is that the Xiidra eye-drop capsules cannot be resealed, whereas Restasis capsules can be (even though you’re not supposed to, I’ve never had an issue getting two doses out of each capsule, which reduces waste and saves money).

The third thing I noticed was that the Xiidra drops burned like hell. Restasis can be irritating, too, but nothing like this. My eyes got red, my vision blurred, and there was no way I could put them in twice a day, as prescribed.

All of this was going on while my eyes were still readjusting after the hyperbaric oxygen therapy for healing my fingers. So it was hard to assess how much of my blurred vision was due to the drops, how much to dryness because I couldn’t tolerate the proper dosage, and how much to HBO aftermath.

For the past few months, I’ve been toughing it out, hoping I could adjust. And the longer I used the drops, old problems of light sensitivity and blurred vision as the day wore on resurfaced. Finally, I’d had enough. Al called our insurance and the pharmacy to find out how to appeal the decree. It was simple. I just had to ask my optometrist to contact the pharmacy and tell them I needed the Restasis because I couldn’t tolerate the Xiidra. Magic words: “medical necessity.”

Within a week, I had my Restasis again. And within only a couple of days, I could already tolerate sunlight better and see more clearly. Thank goodness. Lesson learned. Just because the Health Insurance Powers-That-Be limit your options, push back to get what you need.

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.

Image Credit: Elena Taranenko