The Ebbs and Flows of ICE Syndrome & My Reason for this Blog

I want this little blog website to be a safe and soft place for you to land.  You can be a friend who just likes to peek in every once in a while and hopefully be uplifted in some way....   OR you can be a fellow ICE patient who just needs to know that someone understands.  

If you want to share your story and thoughts with me - you can.   You can post a comment, you can send me an email - I love hearing from you!  Or you can subscribe to my updates via email or a reader without me even knowing who you are.   You don't have to do anything at all but search for my website and read.  It is your choice.  It's all good.  This is what I love about blogs.  

BUT I WANT YOU TO KNOW THAT I'M HERE AND THIS IS WHY: 

ICE disease is a series of ebbs and flows.   The initial symptoms and the diagnosis are the beginning of that first ebb.    Feelings of high eye pressure & pain - and/or words like rare, lifetime, surgery, transplant, vision loss - create an initial wave that crashes down on us.    And then - finally - eye drops may start working and the pressure begins to stabilize.    The first flow happens - and life returns to normal.    But oftentimes without warning - the ebb will return - sometimes at tsunami force.   And the cycle continues.   The new ebb?  Perhaps higher pressure, more eye pain or decreased vision leading to different drops, glaucoma surgery, cataract surgery, cornea transplant surgery, on and on   Thankfully there are usually calm flows between those ebbs to give us rest.   MOST thankfully, it is not life-threatening.   It's just all part of the ICE life.  

Over the years, I have seen "ebbs and flows" in online discussions boards that involve ICE Syndrome.    The boards can be very active with discussions & sharing over a period of time and then they can become very quiet.    And then someone - in their OWN ebb - needs support and they reach out - and no one is there.     The discussion board is quiet.   It is not that no one cares - because I KNOW we ICE patients want to help and support each other.   It's just that life gets busy and there are very few of us.  We have schedules, we have deadlines, we have family matters, we have life to live.   Our ICE disease gets quiet - and our preoccupation with it wanes.    Take a look at my own blog archive - there are times when I am inactive for weeks.    Life gets busy.    

But my goal is to never have someone call out for help - and no one be there.  I felt led to start a dedicated ICE blog and email address as a way to avoid that lonely situation.   As a way to give others some support and encouragement.   

What has surprised me the most is how much this blog has helped me!    It has enabled me to process my own feelings and make me realize the importance of my faith for strength.    Most important, for those that I have communicated with - both ICE and non-ICE, you have been such a blessing and encouragement to me for which I'm so thankful.
 

 You may find some of what I write about uplifting, impertinent, boring, whatever.   But regardless, do know I am here.   Just a post, comment or email away.   We can bless each other.

JOY to you this day!

A Quick Surgery Update

I am thankful that February is nearing its end.   It won't be long before we start seeing some crocus flowers start popping up and exclaiming SPRING!  CANNOT WAIT!  Around here, January and February are usually unbearably cold and snowy and icy.   But like much of the country, Kansas City has been blessed with a warmer winter and little icy precipitation.   In fact, about the only snowfall we have had was on the day of my surgery - and it amounted to only about 1 1/2" inches and it didn't last long.   If it has to snow, that's my kind of snow!

It has been over a week since that snowfall and my surgery.   I had my one week follow up appointment this past Monday.   Bottom line, the pressure is still high.    According to my doctor, there is no major concern at this time.   I guess it's somewhat normal for the pressure to dip - like mine did the day after surgery - and then go back up until it starts to stabilize and lower after a couple of weeks.   But the pressure is higher than what is wanted at this stage - so I'm adding a "new" drop to assist in lowering the pressure.   Hope it works.   We find out in two weeks.     

As far as eye comfort, it has improved greatly in the past day.   A lot less soreness.  The red still exists, but fading away.  All of which I am thankful.  

A clearer cornea - meaning clearer vision - requires time and patience.   The pressure needs to lower first and then the cornea will get its chance to adjust itself.   I could read the first two lines of the eye chart on Monday so I can see.   It is fine and it will be okay.  My left eye is in good shape and seeing great - it's getting quite the workout.   Thank you above for the gift of sight in that healthy eye!  

I did spend a little time talking with my doctor about what was done in this surgery.  I found it very interesting and I will pass this on in a post in the near future.

It's nice to be a week out of surgery and starting to feel "normal" again.   My little family has had a series of nasty little cold / flu-like viruses over the past 3 or 4 weeks and they are basically back on the mend.    No planned surgeries, no coughing, sneezing, fevers, runny noses around the house?   Wow - it's feeling good around here!    

Keep smiling and LIVE your day TODAY!   

ICE - Glaucoma Tube Shunt Reposition Surgery

My surgery was Monday. Specifically, this surgery was considered a tube reposition surgery. Since I have three tubes shunts already in my eye and the pressure was no longer being controlled by the tubes in their current condition - nor by medication - for some reason, the tube located in my upper right eye was chosen to be repositioned. It was chosen to not just lower the pressure, but to also somehow stay away from my cornea graft.

The surgery itself was easy. More details on that in a future post. Recovery from an invasive eye surgery is never easy. Lots of soreness and other things - things I'm used to and things that just require some patience and time. I see the doctor on Monday to see how I'm doing. I'm hoping and praying for some good news.

As I learn more on exactly what was done, I'll take good notes and make sure to pass them on in hopes of helping others down the road.

Have a good day today! Live it!

I'll Be A Sunbeam

Sometimes my mind wanders excessively and I get easily distracted.  This week was no exception.   It all began by thinking of Pity Parties - you know the kind - the ones where "woe is me" is the theme.    I have definitely learned over time that I do not want, nor do I need, a Pity Party.     They sap our energy and they bring us (and others around us) down.

More wandering on a familiar topic...  We all have times in our lives when things don't go as we had hoped or planned.    Some events or life circumstances may be practically unbearable.    Life is difficult.    It always has been.   One minute/day/year everything is fine, the next minute/day/year it can be turned upside down.    (Of course, this is where I always have to remind myself and others - "choose your response").

I continued wandering.    I thought of the spiritual song "Nobody Knows the Trouble I've Seen" (recently brought to mind by one of my favorite commercials).    But wait, you must check this out!   How awesome is that performance in 1962!   Classic!   Just love that smile!   (oops, even wandering as I write!)

And then I started to wonder what old hymns have similar "living through troubles" themes.    Being a lover of nearly all things vintage - I dug into my piano bench trying to locate an old garage-sale-find hymnal.    I ended up finding the following ....

JOYFUL - I like that word!  Copyright 1932 - Vintage Love!   I flipped through its pages and landed on this song that grabbed my heart and mind....

There are actually two versions of the song - the other more popular - but I like this one by F.E. Belden best.   The first two verses go like this:

If I were a sunbeam, This is what I'd do -

I'd find the dark places, searching the forest through;

I would kiss the pale flowers, Bending low at my feet,

Till each lonely blossom Opened fair and sweet.  

So many dark places in this world of sin,

Why not be a sunbeam, Letting the love-light in,

God's beautiful love-light, Smiles and words of cheer;

Kindness is the sunshine We should scatter here.

Chorus:

Beautiful sunbeam!  God sent you here;

I'll be a sunbeam, *Lonely hearts to cheer.

*notation indicates other words can be substituted, e.g., Mother's heart; Baby's heart; Brother's heart, etc.

I so love this little song!  What started off as a mind wandering session ended up being a little life lesson.   YES,  I"LL BE A SUNBEAM!    WE ALL NEED SUNBEAMS!   No Pity Parties!   ICE or no ICE, giver or receiver, smiles and words of cheer can help us make it through! 

Wishing you many sunbeams of cheer today!