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Long time no speak!

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  • Long time no speak!

    Hi everyone,
    Long time no email. Not sure how many of my old correspondents are still on here but i used to be a regular contributor some years ago. I guess the thing is that once you are better you forget there are still people suffering. Shame on me!
    Just thought I would bring you up to speed on how my eyes are doing. As a reminder I had epilasek 15 years ago on one eye and suffered fairly bad dry eye, trying most things available.
    Anyway the good news for everyone who thinks that this thing will never improve is that mine definitely after two years did to the point where I dont really think about it anymore. I still get occasional blepharitis but it’s manageable.

    When I was at my lowest point the threads on this board that I read most avidly were those that spoke of long term (5 year) growth and recovery and perhaps my case is a point in question. So don't despair and never give up recovery may be just around the corner.
    I have said it before but this site saved my sanity so, Saint Rebecca, my eternal gratitude goes to you. Knowing my luck it will now come back with a vengeance but at the moment everything is great. For all those new to the board, if you do recover tell others because hope is the great inspiration.
    Love, thanks and best wishes to everyone who helped me throught the dark times!

    Barry

  • #2
    Hi Barry! So nice to see you! I don't come here much myself anymore but I get alerts about posts and I saw your name and had to jump in! It's SO kind of you to come back and breathe this word of hope. One of the things that is easily forgotten in social media medical support groups is that most people who are there are there at their worst time and when they need the most help. And in our dry eye community, often people have been through such a hard time for awhile that the last thing they want, when they get better, is reminders of it. Plus they're just back to living life (hurray!) I LOVE that you "don't really think about it anymore". And how great to have even odd flare-ups be 'manageable'. One of the things we surveyed on in our 'big survey' was how much people think about their eyes. Here's the page in case you're interested: https://www.mydryeyedata.org/qol-list/awareness I was just going over it again for our newsletter this morning. I have always felt that this is a profound measure of life impact. In the survey (480 participants) - 15% said "all the time" - 35% said "most of the time" - 32% said "half of the time" Only 18% said some or none of the time. So I see reduced awareness as the fruit of both hard work and healing. Of course, people who don't understand our experiences will just tell us not to think about it so much But we know what's the chicken and what's the egg. Eyes don't hurt because we think about them, we think about them because they hurt. Anyway not to harp on the survey. Just really lovely to see you and again I appreciate you giving people hope. I can't believe it's been 15 years. I have so many memories of our early members and the times we had here!
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

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