Saturday, April 27, 2013

ICE Syndrome - Reflections on a Quote




Another one of those "Quotes of the Day" arrived in my inbox a few weeks ago  - and when I read it, I immediately thought of ICE.   So here it goes .....

"Our greatest glory is not in never falling, but in rising
every time we fall." - Confucius

The reality of ICE is that our eye health and vision will fall at some point   Our eye pressures will go up , our corneas will cloud.    And when that happens, we hope and pray that our doctors have the right medicines, the right surgical techniques, to restore our eye health and vision to the best possible outcome.    Sometimes those medicines & surgeries work, and sometimes they fail.   Sometimes they tease us and work for awhile- and then they fail shortly thereafter.     Some of us ICErs find ourselves experiencing failure after failure - and hopefully some of us will experience success for a lifetime.    

What about our attitude and how we handle these ups and downs?   I've said it many times before - it is up to us to CHOOSE our response to our situation, up to us to CHOOSE our attitude to ICE.   Oh, I'm human - I struggle at times - some of you know that.   On those days when I'm constantly bumping into things - or I think too many people are looking staring gawking at that very sick eye of mine, a part of me - my attitude - falls.    It's human nature.   And so I fall but I do get back up.   Choosing to know that we will get through this, choosing to be grateful for what we DO have, choosing to know that something positive will come from this - this is the rising up that makes us all stronger.   And honestly, just knowing that I'm not alone in this journey has helped me.  I appreciate all of you! 

I head to my cornea specialist on Tuesday.  More updates later!    

Live THIS day! 

3 comments:

  1. Deb! Thanks for this post. I hope that you keep blogging. My friends at work have made me a bedazzled eye patch for when the lighting is just too much. I am a recovery room nurse and have been out multiple times over the past few years due to ICE. Never Ending battle! I am so glad to know that there are other ICEers out there! I go to Duke for my treatment, and my glaucoma specialist has told me that there are 2 other ICE patients that he sees...we certainly are rare.... :)

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  2. I'm a ICEer as well out of San Diego for the most part but just bought a home outside of Hattiesburg, MS. My specialists are in San Diego and I am blessed with some of the best. I've been dealing with this since the mid 80's but undiagnosed until the early 1990's. I've lost a lot of visual field but am grateful for the vision I do have in that eye which isn't much but more than so many visually impaired. I have three valves in my affected eye that seem to be doing the trick. I have had two cornea transplants - the first in 2002 and the 2nd just 2017. My cornea specialist considers me a success. My pressure has been under control now since probably 1998. I met another cornea specialist online when online was just evolving. He was getting ready to retire from the USNavy and open private practice in San Diego. What luck! He was part of the team that tested the Ahmed valve and explained to me that when the valve doesn't work at first and meds in addition to the valve don't work than eye message is the key. He explained how to do it and I took that to my glaucoma specialist. She was a bit upset at me. I underwent 4 valve surgeries all about 6-9 months apart. The Navy doc mentioned that you should wait at least 1 year for the valve to start working property. She began to meet with him and others to go over their specially cases on a regular basis now and compare notes. I feel my search for answers rather than a 5th valve surgery that I feared may have contributed to this. I love my doctors and the doctor I met online who I did have the pleasure of meeting when my doctor had him fill in when she was out on maternity leave. I hope you keep up this blog. I like hearing what others are up against. I have IOP control success but my eye is not pretty to look at no matter what I do. I miss the days it was.

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  3. Deb, It is my understanding that ICE affects mainly women and is unilateral - one eye only. Do you know of others where it affects both eyes? I have be involved with Will's and have met a few men with the condition but mainly ladies from across the globe.

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