Living with RCE

This is random and out-of-nowhere, but it’s been fresh on my mind recently so figured I’d talk about it a bit.

For those of you who don’t know, I have a condition called Recurrent Corneal Erosion. Basically it means that the epithelial layer of my eye (the “skin” so to speak) has pealed away from my eye, thus causing blurred vision, irritation, oh- and pain. Lots of pain. This first happened a few months after Claire was born… in the summer of 2006.

It started gradually. I would wake up in the mornings and feel like something was in my right eye for several hours. It was extremely irritating. I would look and look in the mirror and find nothing in my eye. I asked Steven to look and he could find nothing. I thought I was going crazy. Then mid day to afternoon it would get better and less irritating and I’d forget about it. Until the next morning when it started all over again.

Then one morning I awoke to searing pain in my eye. Something was definitely wrong. I couldn’t handle it anymore. We went to an eye doctor and she immediately told me that it was RCE and prescribed various eye drops and pain medication. I started on her prescribed routine, but it didn’t really help. I kept waking up to pain and not able to function well through the day. So I went back and she did a very minor eye surgery by removing the epithelium from my eye. She used numbing eye drops first so though it was uncomfortable (and disturbing!) it was relatively painless. But after those numbing drops wore off, I kind of wanted to die.

After that procedure the idea was that my epithelial layer would grow back attached again and I’d be all better. Well… it was a nice idea anyway. But it didn’t happen as I had the same issues after the layer grew back. It grew back unattached. I was getting frustrated. I had night drops, morning drops, and a therapeutic contact to hold my epithelium in place and I was afraid to take the contact out (and I mostly just left it in- so I could be somewhat pain free), but the contact isn’t a good long term solution.

Finally we went to see an eye doctor at Emory in Atlanta and he explained RCE to me in a much more understandable way so I knew better how to handle it. That was very helpful. He made it simple.

So how do I handle it? Well, at first- to best aid in healing, I used a high sodium ointment and drop which is what helps the epithelium to adhere back down to the eye. I used it faithfully at night and in the morning. It stung like all get out, but was better than the alternative. This seemed affective.

I read (when I was first going through all this) about people that dealt with it and that most people have to be very careful when they open their eyes in the morning and I thought “I’ll never be able to remember that! What a pain!” But somehow it very quickly became second nature. I guess I learned my lesson?

To this day, one of the first thoughts on my mind every day is Recurrent Corneal Erosion because I am reminded of it every morning as I wake up. I can still feel it there before I even open my eyes. I no longer need the drops as often, but when I wake up, my eyes stay closed and then partially closed for several minutes before I can safely open them all the way. Sometimes I even run down the hall to a crying child with my eyes closed. I brush my teeth with my eyes closed. I’ve had to bump around a few times, but I know better than to open them too fast! It is strange, but I have gotten quite used to it. Sometimes I still feel the sting of RCE in the morning, but since my visit to the Eye doctor in Atlanta, I haven’t had any more urgent problems requiring anymore visits. I use the ointment/drops when I feel another episode coming on more strongly and other than that, remembering not to open my eyes in the morning seems to have done the trick.

My main advice to anyone with RCE:

• Get the high concentrated salt drops and ointment and use them faithfully until your RCE is under control and then always keep them on hand for future flare-ups.
• Do not sleep with any sort of fan on or air blowing on you. This dries out the eyes and badly aggravates RCE.
• Be VERY careful when you open your eyes in the morning. This can make the difference between going about your life normally or having a hugely painful reoccurrence requiring doctors visits and pain medication.

So there you have it- my experience with RCE. Fascinating, no? ;)