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Keratoconus; or why I wear my sunglasses at night.

Keratoconus or why I wear my sunglasses at night - I can buy funky sunglasses to deal with the sun. I can take photos that are very artsy. I can still work part time. I have an understanding boss who allows me to work only daylight hours.

I first heard the word Keratoconus last fall (2017) at what I thought was going to be a routine eye exam. I had gone in to get my prescription updated because my glasses seemed to be failing me. Again. I was 46 and thought my rapidly declining vision was a routine part of aging. The doctor said “I think you have Keratoconus.”

“Kera - what?” I asked. I had to write it down. Then of course, I googled it. I was referred to a specialist group, who would diagnose the condition officially later that month. I called my mother crying (yes, even though I was 46.) “Mom! I might not be able to read books!” I wailed over the phone. I have been an avid reader and book lover since I was 3. Books were my first love. She told me to stop being dramatic. That’s my mom! But hearing her voice calmed me down.

Then I thought of all the other things I might not be able to do. See the people I love clearly. Then the list went on. I think that Keratoconus may have been affecting my vision for years, I just hadn’t known it. My night vision has never been the best but the past few years it had been impossible for me to drive at night. The sun has always hurt my eyes. I now live in Florida, the Sunshine State. Oh the irony!

I’ve slept with my eyes open my entire life, which probably led to or contributed to the condition of Keratoconus. For the record: Yes, I’ve been told how creepy it is to be sleeping with my eyes open. And no - it’s not just a small crack in the eye lid. Sometimes full open. People talk to me when I am sleeping because they think I am awake. My eyes will even track them. It would be a good party trick if I was conscious. Or could sleep in a room full of people.

Artsy photo taken by my of what it is somewhat like for me with Keratoconus.

My ophthalmologist said that sleeping with my eyes open was probably a physical defect vs. a sleep disorder and suggested I sleep with my eyes taped shut. Did I mention I am scared of the dark? Another thought was “What if I pull off my eyebrows?” So I’ll be honest, I have not done that yet. I started sleeping with an eye mask and special petroleum type eye goo that helps keep my eyes moist. Making sure my room and house is free of air fresheners and other strong fragrances also helps reduce severe symptoms. Allergy season, when the air is heavy with pollen I am pretty much, well, you probably know the word. My eyes are extremely sensitive. I no longer wear eye makeup unless it is a very special occasion.

Most mornings I wake up with tears all over my face and puffy eyelids. Red eyes. I wonder if other people wonder what I am smoking. I get random stabbing pain in my eyes. My doctor says the nerves in the corneas are extremely sensitive.

I was fitted for hybrid contacts this spring. I left the doctors office with them in for the first time and called my mother. I was crying again. My mother wanted to know who had been in an accident.

“No mom. I can see! I can see!” They were tears of joy. It was like the time I got my first pair of glasses at age 11 and could see individual leaves on the trees. It was like a miracle. I was so happy. Until I got home and could see how dusty my home was. That’s a joke. I was both amazed and slightly horrified.

Unfortunately I was unable to tolerate the hybrids long enough for them to be useful. They were not keeping my eyes wet enough. $1000 down the drain. Bummer. My ophthalmologist told me to stop wearing them. The eye center is trying to get scleral lenses deemed medically necessary because my optical insurance coverage is nil. That was two months ago. At my last appointment my doctor told me the person who handles that process quit so it might be a little bit longer. Sigh.

My mom is a real trooper and would pick me up for events. I’d jokingly called her “my seeing eye mom.”

I now drive very small distances during the day only. My mom is a real trooper and would pick me up for events. I’d jokingly called her “my seeing eye mom.” At least until she was diagnosed with cataracts in both of her eyes last month. She will be having surgery within a year. We joke about the blind leading the blind.

I have four different types of eye drops and ointments, none of which are cheap. Trying to remember to put this one in every 20 minutes or that one in right before I fall asleep before I actually do fall asleep can be tricky. When my husband walks in to see me with a headlamp strapped to my forehead with my eyes inches from the baseboards or countertops he shouldn’t be wondering what I am doing. I am both improvising and cleaning.

While my experience might sound like one of those “it’s good when... it’s bad when...” stories I try to face this condition with a sense of humor and hope. I can see enough to type this. I can FaceTime my grandchildren. I can stalk my children on social media. (Kids, I’m joking.) I can read books with big bold font. I can travel. I can buy funky sunglasses to deal with the sun. I can take photos that are very artsy. I can still work part time. I have an understanding boss who allows me to work only daylight hours. An added bonus is if I do something clumsy I now have the option to blame it on my cats OR on my vision. One or the other is the true cause often enough anyway.

My journey is not done. There seems to be advancing technology and new treatments. I am also not alone. There’s a great group on Facebook and other sites, like this one, that share experience, resources and support. I remember that Claude Monet did some of his life’s best work with failing vision. I shared that positive fact with one of my adult daughters. She made me laugh when she asked “Who’s Monet?” I envision a museum trip in our future. Life’s good!

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3 comments:

  1. My 21year old son was diagnosed about 2 years ago he had the crosslink surgery done and being a full time student is now trying to get the scleral lenses fitting in being 3 1/2 hours away is hard but hang in there I don't understand why everything takes so long to get through the experimental stage so the insurance companies can at least help with part of the bill. But we lost the fight with the insurance company with the lenses though. Good luck

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  2. Thank you for sharing your stories! My 17 year old son was diagnosed yesterday. Total surprise to us, as we had a new Rx in June 2018 and another in December 2017. My son thought they flipped the lenses and of course it would be fixed in know time. Well...here we are, with a diagnosis of Keraticonus. I am hoping that you may have some suggestions on how we can support him during this time? I want to be positive but how do you tell your teen son that he has this disease? He suffers from depression and I do not want him to spiral from this. Thank you to all!!!

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  3. When it comes to eye drops (over the counter), you may be able to ask your primary care physician for an Rx. I have Medicaid and instead of paying $14 for mine, I pay a dollar.

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