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! 

ICE Syndrome Journeys - Vision Encounters & Life Lessons from Spring Break

On our spring break trip, we visited this state...

 

 And we visited this fella ....   (Isn't he adorable??)

We had a great time visiting friends and experiencing life with them.    From watching baseball games to celebrating a milestone birthday & everything in-between, we were on the go all the time.    The weather was delightful and an antidote to the 2 feet of snow we had before the trip and the 8" of snow we had one week after we got back.   I'm pretty sure the snow is now over for the season ...but didn't I say that 3 weeks ago?   

On the first and last days of our trip, I had two vision related encounters.   I've thought about those two encounters - wondering what I could learn from them.  

On our first night, we went to a very busy Tex-Mex restaurant (I do love me some chips & salsa, most definitely my biggest food weakness!)     My son and I went to make a purchase at the front of the restaurant.  The hostess was young, friendly & pleasant - and I caught a glimpse of her eye.   It was an oh-so-familiar sight....a patch graft on the lower outer quadrant of her eye.    I wanted to so give her a hug, encourage her and let her know I knew what she had gone through.   But the restaurant was noisy and busy - she was scurrying about, taking care of her customers.  She was LIVING the LIFE she was set out to do - and her eye, or the way it looked, was not going to stop her!    

On our last day, we were shopping at an indoor mall and we needed to get to the lower level.   Although we searched for an escalator, an elevator was nearby.   As we waited, almost out of nowhere appeared a lady probably in her 60s or 70s - pushing a stroller that I assumed held her grandchild.    We exchanged pleasantries, talking of elevators vs. escalators and strollers.    She mentioned she was visually impaired - blind - and taking a stroller on an escalator was a little bit much for her.   She spoke of living in the Midwest before she moved south and how her vision instructor taught her how to ride the escalator with her disability.    I remember thinking how she didn't look vision impaired and her attitude was absolutely fantastic.   I wanted to give her a hug,  encourage her and let her know I admired her,  but the door opened and she scurried away to meet up with her party.    Despite her vision disability, she was LIVING LIFE.   Her lack of sight of was not going to stop her!  

So the lesson I have taken away from these encounters???    

Regardless of where we are in our years of age, or how our eye looks, or our stage of ICE, or any impairment we might have....we LIVE our life.   We don't freeze, we don't despair.    We may have to adjust things a bit at times - a change in vocation, a change in location, a new way of doing things - but we continue to LIVE.   We embrace what we are given and keep on moving.   This is a life lesson. 

While I have been practicing to LIVE....THIS day, THIS moment - I always welcome the reminders - and these spring break encounters do just that.    

Live THIS day my friends!  

 

So long ICE - Welcome Spring!

Winter gave us hopefully one last blast of raw cold and wind this past weekend.   And of course, my son had an outdoor soccer game on Sunday evening - the temperature was 32 and the wind chill temperature was 20.   As is well documented, I do not like winter for obvious reasons - & so I complained.   But I must say - I enjoyed the moment - even if it was the coldest I've been in a long time, if ever.     This time last year, I was in-between eye surgeries in February and April, so there would have been no way my eye could have taken all that wind.    So this year - I LIVED the moment.  It was a memory created.

There are just a few little clumps of snow left that had once been 8 foot mountains.   Last week, in the start of the slow melt-off, my son decided he had to enjoy this winter in an unlikely way.   As much as I begged him to come inside, I was doubled over in laughter and tears.  He is such a joy.   I had to snap a picture.  Perhaps it will bring a smile to your face.  Yes, that's him in slippers, shorts, no shirt, artist's hat and snowballs in each hand.  It was his tribute to hopefully the last snow & ice of winter and a welcome to spring!  Another moment and memory captured.

So now, I'm starting to see just a tinge of green in some of the tops of the trees.  A good sign!   Spring Break is coming upon us and the little family will be taking a little excursion to visit some friends in a warmer part of the country.   Temperatures are to be near 80 & sunny most the time.    Ahhhh - absolutely perfect for this body!    Sunglasses weather which I LOVE!   (Topic to be discussed in a future post!)    Last year, I didn't get to make the trip with the hubby & son since I was still too much in "recoup mode" from the February surgery as well as, "getting ready for the next surgery mode" for the April surgery.   THIS year I am absolutely going to savor the moment and create some more memories! 

Hope warmer weather is headed your way too.   ICE be gone!  ;)

Snow and ICE

I am not a winter person.   Never have been - never will be.    I'm stubborn like that.  I love the midwest - but I do not like a midwest winter.    I do not like to be cold, I do not like snow, I do not like ICE  - and that includes ICE Syndrome!   ;)     This past week, winter decided to dump nearly 2 feet of snow in two major snowstorms in my neighborhood.    How not-so-nice. 

I so want to live the moment - live the day - but a snowy winter day is one that is best enjoyed indoors.  I ask my son - on his fourth snow day of the week - to build me a snowman outside my kitchen window - one that I can look down on and smile upon in the upcoming days .    And so he does.   I venture out on the cold snowy deck, snap a picture.  Adorable.  My way of living the moment in winter!  

 The snow ends.   Two feet of snow - with just a little in-between melting and lots of snow plowing - results in tall mountains of snow on street corners and narrow streets.   Street corners of tall snow mountains and narrow streets aren't the best driving conditions for someone with a very cloudy ICE eye.    But I take it extra cautious -  I get my critical errands done and get my son to his next activity safely.    But after all of this, I do declare it is time for some warmer weather, sunny skies and sunglasses.   I'm ready for Spring! 

Why the ICE Syndrome Eye is Worth Fighting For & My Story of The Red Laces of a Baseball

Dreaming of Palm Trees & Beaches on this cold Kansas day!

  
First - a quick update.   I saw my glaucoma specialist today.    Pressure in that right eye?   16!   WOO HOO!    I don't go back until May - and the next appointment with my cornea doc is in April.    That means I have THREE WHOLE MONTHS before I see another eye doc!   Not only that, but I will have gone at least one year since an eye surgery!   Another WOO HOO!    Not all is rosy - my right eye had difficulty picking out the large letters this morning.   But I'm used to that and my cloudy double vision - for which there are no simple answers.  But for today, it's a look above and a whispered "thank you".

Which leads me to my topic for today....

WHY THE ICE SYNDROME EYE IS WORTH FIGHTING FOR.....

Trust me, I have struggled at times with just wondering why I bother to go through all the stuff I do for this ICE eye.  Surgery after surgery, appointment after appointment, medication changes, side effects, pains, aches, irritations, ups and downs - it IS a long continuous journey with many twists and turns - and it does get tiring.     Several years ago I  read online of someone who had her ICE eye removed so she wouldn't have to deal with the hassles.  "Wow", I thought, "A little drastic, but I understand".   Since then, I've heard more comments similar to this.   

Through the 13 years I have lived with ICE, I have fought, I am fighting and I will continue to fight for this ICE eye.   Here's why.... 

1) A couple of you have written me indicating that you have bilateral ICE - ICE affecting both eyes.   For you, my heart goes out to you and I think of you often.    You are an inspiration.     

2) While most of us experience unilateral ICE - affecting just one eye - who knows if ICE may eventually attack the other eye.   I don't worry about such possibilities, but it's enough to make me fight through the issues I have with my ICE eye - to give it the best chance I can for vision down the road.    

3) Vision technology has grown by leaps and bounds in the past 10 years.  And while little research is being done on ICE, there just might be a good solution for us soon.  Hang in there.       

4) What if an injury is sustained in the healthy non-ICE eye and vision is impaired or lost?  Once again, not something I worry about but I am conscious of it.   If you are like me, it is so easy to say "BUT that won't happen to ME".   And here's my story of the Red Laces of a Baseball.

 Almost two years ago I was attending my son's baseball tournament in a small Missouri town.   The fences along the sides were low.   It was a hot humid day - and I got up out of my lawn chair, reached into our cooler for a bottle of water and I heard the ping of a metal bat.    I looked up and believe it or not, no more than two feet away from my left "good" eye were the red laces of a hard hit foul baseball.    It was one of those moments where time stood still and the split seconds seemed like minutes.   I ducked and disaster was averted - although it took a while for me to catch my breath.    A lesson.  It can happen.

Yes there are problems - but there is much to be thankful for.   In many ways, these experiences have been a blessing in disguise.    As sick as my eye is, in the evening when the television is on and when I close my good eye, I can still see moving images.   If something happened to my good eye, wouldn't I consider those moving images to be a blessing?  Shouldn't I consider it a blessing now?    Yes, this blessing - this vision - is worth fighting for.   You never know what the future holds.   

Sometimes it just takes the red laces of a baseball to remind me.  

A New Year and Stop the Clock

Where does the time go?   Happy New Year!    

First of all, thank you to those who have sent me email updates over the past few months.   I so enjoy hearing from you - and I apologize if I haven't gotten back to you or have sent a delayed response.  Just so everyone knows, some of us have had eye surgeries  (both glaucoma and cornea dsaek), changes in medications, good news, bad news, so-so news.    It's the life of an ICEr.   It's just so important to KNOW that you are NOT alone out there!  If any of you ever want to share your ICE experiences out in blogland, please let me know and I'd be happy to include your story in an upcoming post.   This spot is to be a place to help us get through all of our journeys - not just mine!   

As for me, the past six months have been so crazy - let's just say that I'm glad 2012 is over.   Between the fire, family illness, middle school life & activities, my small online business, significant home improvement projects, holidays & more, there has been a lot to handle, process and maneuver through.   (Did I mention I had a very significant birthday milestone in that time frame too?  YIKES! Say it ain't so! )    And through it all, I'm happy that my eye held up - without any drastic changes.   Sure, double shadow vision - cloudiness - wandering eye.....that's just part of my new normal.    But to have gotten through those six months with no pressure increase, no cornea pain - it's nothing short of a miracle to me.   I know 2013 will continue to present challenges - but at least it is a NEW YEAR!  Regardless what happens, it's up to me - my choice - if it is happy or not!

My next appointment is with my glaucoma specialist in two weeks.   The past few days I have had that oh-so-familiar dull achiness behind that eye.   I'm so hoping it is just an anomaly - and nothing.     Trying not to worry for we know that does us absolutely no good!    Que sera sera.

 The other day I was flipping through an old issue of Health magazine and came across the following paragraph by Susan Hall.   I thought I'd share it with you and close with it.   It is such a good reminder!   Take care everyone!   I'll try to be better in 2013! 

Stop the Clock

You wait all week for Friday at 5, and the next thing you know Sunday night is staring you in the face.  Instead, make time feel like it's slowing down by living in the present.  Researchers at the University of Pennsylvania found that when people made a point of actively savoring the things they usually hurried through - maybe it's eating breakfast, drinking a cup of tea, or walking to the bus - they experience more happiness and fewer negative emotions.  So revel in the softness of your fluffy duvet, the smell of an orange while you peel it, or the carefree giggles of your kids.