Hello - I'm managing RCE

[mommychew]

Hi all! I found this site when I did a web search for a support group for RCE. I started having erosions in one eye in September, 2007. I didn't get properly diagnosed until November, 2007. I had two debridements with the punctures - one in December and one in January, 2008. I'm happy to report that I have not had any erosions since then, but I am very aware that I could again. I'm hyper-sensitive to my eye dryness and try hard to treat my eyes kindly.

My treatment now includes Systane drops in the daytime, and muro 128 at night. Even though my erosions were in one eye, I started treating both eyes when the "good eye" started getting that tight, dry feeling. I take flaxseed oil supplements every day and try to drink alot of water. I stopped wearing eye makeup too.

I'm pretty sure my problems stem from being dehydrated frequently and sleepling with my eyes open during REM sleep. I now turn off all ceiling fans at bedtime and wear a sleep mask - the silk fabric kind. I "stick" it to my face with a thin layer of vaseline.

I'm really happy to find this group. I still get panic attacks in the morning if my eyes feel stuck, and I have nightmares that I'll have another erosion, and when I wake up I can't tell if it's happened again or if I'm just dreaming.

Thanks for reading! Hope to chat with you soon!
~Sheila

[liz56]

Hi, Sheila.

Thanks for sharing your story; it sounds so familiar to me. I'm glad that the last procedure, which sounds like a stromal puncture, worked for you. I also became very cautious and now treat both eyes all of the time, and I, too, have panicked moments when my eyes are in breezy conditions or they stick or even when they get a little tired and my vision is not as sharp as what I have been used to.

While I'm not glad about the circumstances that brought you here, I am glad to have you here with us. This community is a big part of my being able to recover and manage erosions and map-dot-fingerprint dystrophy.

Take care,
Liz