Live Well - Thoughts after Thanksgiving

Live Well.    This had been on my mind before Thanksgiving.   In fact, if you read my previous post a couple of days ago, you may have seen a couple of paragraphs at the very very end that I meant to "edit out" - but just forgot - oops (I've edited it now)!   One of those paragraphs was about "living well" - and I just didn't want to bombard you with another quote or commentary after my wordy Thanksgiving thoughts and update!   :)

So now that it is after Thanksgiving - let me try this again.  This quote from Ben Franklin got me started:

 You have heard me say before LIVE TODAY!  Make the most of - and enjoy - the limited moments and days we are given on this earth.  And quite frankly, I haven't done a very good job of this over the past couple of months.  Just too much worry has seeped back into my life.  So I'm going to work on this - and the holiday season is a perfect time to start up again. 

But now, I'm going to also add  LIVE WELL to my mantra.    Regardless of our financial situation, family situation, health situation - we can live well.   We all have different definitions of "living well" - but I believe it all begins with our attitude and our conscious thought of living daily - not just getting through the day.

So my friends....

Live Today.

Live Well.

All is Well. 

Thanksgiving, Stable & A New Normal

Friends - it has been waaaay too long since I have posted.  Clearly not my intention to post so infrequently - but you do what you can do.  To say my life has been hectic is an understatement - just way too much going on right now!  I hope this finds you well. 

 First of all, here in the U.S., it's almost Thanksgiving - a day of giving thanks!   Through the rumbles and tumbles of life, sometimes it isn't always easy to be thankful for our circumstances, for what we're going through, for what we've been dealt.  Life IS difficult.   But if we just stop, take a deep breath, we can realize there is so much to be thankful for.   So make Thanksgiving, make everyday - a day to push our troubles aside at least for a minute, and be grateful and thankful for our blessings - even if they are currently disguised!   One thing I know I'm thankful for - YOU!   Through this past year, many of you have lifted me up with your comments, with your own stories.  Thank you.  

 An update on my ICE...in the past weeks, I have seen both my glaucoma and cornea specialists.  In both visits, as I walked out the door, I lifted my eyes to the skies above and whispered "thank you".  As you know, ICE lives with you forever.  You don't get over it and you never know what to expect.  But - my eye pressure is hanging in the normal range - and my transplant is okay.  The vision in my right eye is extremely poor but STABLE is the word I choose to hear.   I am thankful.   Stable means no surgery in the immediate future.   

I do continue to struggle with my "ghosted" "crooked" double vision.  The current hypothesis: too many surgeries, too much scar tissue, alignment issues.   Probably not fixable.  Prisms probably can't address it.  Eye muscle surgery tricky, not recommended now.  Double Vision is the new normal.   I will live with it.  I have no choice.   I will continue to learn to deal with it.   

So, in conclusion, just THANKFUL for STABLE and accepting of a NEW NORMAL!

All is well. 

  

An Update, Worry and Corrie Ten Boom

Just an update friends.....

Life continues to be hectic in many ways.    It's a good thing I'm older and have a few life experiences behind me as I don't think I could handle it all if I were younger!   (Guess that's a benefit of nearing that mid-century mark!)   I have been able to reschedule my visual field exam and eye appointment until late next week - in hopes things will be a bit calmer by then.    Stress is never good for glaucoma and ICE - or general health for that matter - but I do think that my eye has been able to handle the chaos pretty well.   I'll find out next week. 

In the meantime, another great quote popped up in my inbox the other day.... 

Source

   

 Love it!  and Oh so true! 

If you're not familiar with the quoter - Corrie Ten Boom - web search her name and you'll learn of the amazing person she was - what she endured, how she got through it, and how she allowed the experience to change her life and the lives of others.   I remember her in the 1970's and the movie about her experience ... "The Hiding Place".   What a wonderful lady and an eye-opening movie.   Given her circumstances, she knew that there was a plan for her to make a difference in the world and that is exactly what she set out to do.   She CHOSE her response to what had been dealt to her.  

May we all have the strength to know there is a plan for us and to respond to our circumstances in a way that will make a difference in others' lives. 

May your day be filled with PEACE and JOY!  

 LIVE YOUR DAY TODAY MY FRIENDS! 

Tough Times Don't Last - Tough People Do!

I have been struggling for several days with what to write in my “next post”.    You see, life continues and the unexpected happens.   This represents my past couple of weeks.   Yesterday, as I waited during my son’s soccer practice, I tried to write – but the words just wouldn’t come.   And  then back on the road in the car to take my son to his next appointment – the radio was on – and the answer was right there.  

Tough Times Don’t Last

Tough People Do

It’s a phrase I have known for years. But this time, the phrase came to me in song….a song by country music singer Trace Adkins.    It spoke to me – and was my answer to my post dilemma.  (You can listen to the song here if you'd like.) 

My past couple of weeks have been a whirlwind of happenings.   The most devastating – an uncontrolled brush fire that swept through – destroyed - my family’s heritage farmstead.   No one lived there – no lives were lost – thank God.    But the physical loss and the emotional toll on my parents – in their 80's - has been rough.   Trying to be "steady" for my folks and dealing with my own emotions of memories of the farmstead - and of dreams lost - controlled me for days.    

My son and I "picking pears" on the farmstead several years ago.

Throw in the start of middle school for my son and all that entails – new routines, back-to-school night, fund raisers, homework.   Adjust to new schedules for soccer, baseball and basketball practices and games.   Add in the start of middle school Church “Confirmation” classes on Wednesday nights and continue on with some weekly medical appointments for my son.  Hear of two acquaintances that have passed away.  

To say I have been emotionally and physically overwhelmed and exhausted is an understatement.     I just now feel like I’m starting to emerge out of the fog.   You know why?    Tough Times Don’t Last – Tough People Do – and  I am tough!   My faith helps get me there. 

We all experience tough times – it’s part of life.   But it is up to us to know those tough times won’t last and it is up to us to choose to be tough.   I do think there is a time for us to feel  the sorrow – feel the loss - feel exhausted during the tough patches of life.   But we then must pull ourselves up by the bootstraps, stay strong and get moving again.   

For us ICErs, we know we are in this ICE thing for life.    So you may question that this “tough” disease is one “tough time” that will last.   BUT I challenge you to look at lCE just a bit differently.   Take it day by day - event by event.  There WILL be tough times – perhaps a high pressure reading, another surgery, a dull ache, more drops,  poor vision - you know the routine.   But through each of those tough times, CHOOSE to pull yourself up by the bootstraps, and know that you WILL get through it.  Adjust to a new normal if necessary.    Be tough and LIVE your life.

God bless!   All is well!

ICE Syndrome - Attitude and Gratitude

Today marks the one-year anniversary of the start of this blog.   In that one year, I went from not knowing one person with ICE to now having communicated with eleven fellow ICErs and several blog friends.   You readers lift me up!   We are all in different stages and all of us struggle at times – but we are all in this together.    There is a lot I want to do to make this site more beneficial.   In some cases I need to learn some new technology or do more research and, as always, I need to find the time.   If there is something that you think would be helpful, please let me know.   Thank you everyone!    And now to my post......

I subscribe to a "Daily Thought" that is delivered to my email each day  - and several weeks ago this one showed up in my inbox....

Source

Not many “quotes of the day” grab my attention, but this one did.    If you have read some of my previous posts, you can often catch an underlying theme .... we can choose our responses to our situations.... and when we choose a positive response to a not-so-good situation....things change.    A positive attitude does make a difference.  I have to remind myself of this often.

So when it comes to the quote above, I do agree with the basic premise, except it's missing something.  For me, happiness depends on more than just my "quality thoughts".   I also need my faith, my family and my friends.   Mix in quality thoughts and a positive outlook and I will have a happier life.     

So what in the world does this have to do with ICE?    Well, sometime over the past 12 months, something changed - I chose to think of this disease differently.    I wouldn't be able to change the fact that I had this disease, that I had been through so much already and that there was much more to come.   But I could choose to think - and believe - and know - that somehow this rare ICE disease is a blessing in disguise.   Hard to believe, but I'm grateful!   I still have days where I struggle - I'm human!  But by stopping and readjusting the attitude, I realize ICE has been, and is, a blessing that reveals itself in many ways - through my faith, family and friends (including you fellow ICErs).  I'll share some examples in the future.

ICE changed my life....in more ways than just the physical damage.     It changed my attitude.   It gave me gratitude. 

I challenge you to think of how your attitude can lead to gratitude!  

    

Enjoy your summer - with ICE Syndrome!

Okay - so I have been a little delinquent with any new posts over - let's see - almost 2 months!    Clearly not my original intent when I started this blog!   I apologize - but it is summer.    At my last glaucoma appointment, the doc said "come back in two months - enjoy your summer".       SO that is exactly what I have been trying to do. 

A simple summer hydrangea in my garden

Besides the nearly unbearable heat and humidity here in the midwest US, I just adore summer.   It has always been my favorite time of year.    Being a stay-at-home mom gives me the opportunity to enjoy having my 12 year old son around all the time.    Precious time flies - and I do my best to truly enjoy the moments - lazy or busy - I have with him.    In my last post, our little family had been in St. Louis for a baseball tournament.   Since then, there has been lots more boys baseball action - including my son's first-ever "in the park home run" in the semi-final game of the World Series tournament (a SIGHT I will never forget ...SEEING him charge around those bases!) - and his team ended up taking 2nd place!      Spring/summer baseball season is officially over and our little family recently took a quick vacation out to enjoy the cool, beautiful weather & scenery in the Monterey, California area!   It was an awesome time!   The often lazy & relaxing days of summer seem to be just the right prescription for me.    School starts up in 3 1/2 weeks so I just want to keep on playing!  :)   

As for the eye...    At the end of June I saw both my glaucoma and cornea doctors.    First of all, my pressure seems to be holding steady at around 18/19.    I'm good with that and just hoping that the spikes & aches (and damage) stay away.     My cornea isn't doing great - but there is no pain or tearing - so I'm good with that too.    I still have the ghost double images which is quite bothersome but I'm learning to adjust.   At this point, right now, I just want to ENJOY MY SUMMER and where I'm at eye-wise right now, I think I can continue to do that!   

As I have mentioned before, writing this blog has been therapeutic for me on handling the ups and downs of this ICE thing and in turn, I hope it helps some of you knowing there's someone out there who is going through some of the same things you are.    I know we can learn from each other and gain strength and support from each other as well.   I will continue to post my various thoughts - and love it when you either post a comment or send me an email.   It makes me and other fellow ICE readers know we are out there and more than just "rare"!   

 

Until the next time, CHOOSE TO ENJOY YOUR SUMMER!            LIVE IT!  

Ferris Wheel Ride - A Lesson for Living with ICE Syndrome

 This past weekend our little family had the pleasure of spending the weekend in the St. Louis area for my son's out-of-town baseball tournament.   In our down-time, we had the chance to do some fun exploring - a team tour through Busch Stadium, a ride up the arch and a visit to the City Museum which had a vintage Ferris wheel sitting atop a ten story old warehouse building in the middle of downtown St. Louis!   

Now this almost-fifty-year-old hasn't been on a Ferris wheel for ages!  I never really liked that feeling of my stomach "dropping" as the ride went up and over/round and round.   Ever since being diagnosed with ICE and having my multiple surgeries, I haven't felt the need or desire to ride ANYTHING - but there was something about this Ferris wheel.    Sitting on top of an old building overlooking the city?    A gorgeous sunny day?     How many times can you experience a "rare" opportunity like this?   

My son has always had a fear of "scary" rides - and surely a Ferris wheel 10 stories atop the city qualified as one of those "scary" rides!   This became my challenge - I talked to him (and was trying to convince myself too!) about facing our fears - how we couldn't go through life being afraid.   We need experiences to conquer our fears - we need to live life and create memories - and we need each other (he and I would ride together) for support. 

Hubby, Son & Me Ready for the Ride!

   Next thing I know, all three of us - hubby, son and me - are getting aboard the Ferris wheel.    The ride starts and we're going up and over/round and round.   A little nervous sigh - and then realization that you CAN do this!   You look out and up.   What an awesome view!    You don't look back - it's hard to do in that cramped seat, it serves no purpose, and it might make you sick.   You don't look down or close your eyes - for you might miss the sights.   

After a few minutes, our time is up.   It was a good ride and a wonderful experience.  We faced the fears, created memories and LIVED the moment! 

  

  It might be a stretch - but isn't a Ferris wheel ride a lesson for how to live with ICE Syndrome?    You get diagnosed with a "rare" disease.   You are fearful but you have no choice but to face it in order to live.   It's best to have a friend or two to help get you through it (hope this blog will help!).   Your life seems to go up and over/round and round  as you experience symptoms and surgeries - and you realize it's not easy but you CAN do this.   You learn to look out and up - enjoying the good times, enduring the bad and realizing there is an ultimate plan of why you are going through this.  You don't look back on why or what went wrong - it makes no difference.   You don't look down and pity yourself - you miss life.  You simply jump in and face what you are given and Live!

So whatever your circumstances, remember the Ferris wheel as you journey with me.    You Look Out and Up  - and - You Live Life!    

Enjoy the Ride!