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!

ICE SYNDROME SYMPTOMS SUBSIDE!

 The past 16 months have been rough as it relates to ICE Syndrome....2 cornea transplants and 2 glaucoma tube shunt revisions, and 1 tube shunt removal with ECP.   Honestly, it has been ROUGH and it has been TIRING.   Days laying flat on my back looking at the ceiling, high pressure aches, stabs of pain, headaches, double vision, clouded blinded vision, various cocktail of eye drops that sometimes create undesirable side effects, swollen red eye and on and on.     I am very much in the middle of this ICE stuff and it tries to take my "life" away.   I try so hard for it not too - but sometimes it just can't be helped.    Sometimes also, it feels like it just paralyzes me into inaction.  

But life does go on.   In those 16 months, my dear son went from a third quarter 4th grader to graduating out of elementary school.  Where does the time go - so MUCH I wanted to enjoy - and only feeling up to being able to do a LITTLE.     Still able to encourage and sometimes prod, I wanted to do so much more.   Sure, I went to parent teacher conferences, cheered at sporting activities, went to plays & ceremonies - but as I look back - did I really get to enjoy them as much as I could?    Did I savor the moments?   Could I have done more?    I enjoyed - but it seemed like ICE was at every nook and cranny trying to knock me back.  

My appointment on Monday was decent.    In the past two weeks, my pressure dropped to an acceptable level....between 17 and 21.   I had remaining sutures removed - which is helping stop the excessive thick watering.    There is still cloudy vision and double shadow vision - but that is a new normal now and one that I'll live with for a long while if I can.    I just don't want to hit the surgery table anytime soon.   Can I really start living again?    It's summer - can I really enjoy it?    Can I savor the moments this summer with my son before he hits those middle school years?   

One thing is for sure - I'm going to give it all I got to make it happen.     My new command:  "ICE symptoms subside - I have more important things to do right now!"

The ACHE and When Eye Pressure Just Won't Stay Down

It was just four weeks ago when I had my tube shunt removal - and some laser zapping of cells that make aqueous fluid.     Day One after surgery - eye pressure was 9.    One week after surgery - eye pressure was 11.   Beautiful! 

Late last week I felt a couple of little twinges on the inner upper quadrant of my eye & eye socket....I'll just call it "the ACHE".    I really didn't think much of it - although I did wonder if perhaps it had to do with sutures from surgery or some other little complication of surgery.   My three-week surgery followup was earlier this week and I mentioned "the ACHE" to the tech and my doctor took notice of the note in my record right away.    Observing the physical condition of my eye - nothing was really out of the ordinary - just my typical corneal edema.   

And then it was time to measure the pressure.   It seemed a little quiet a little longer than normal and then my doc asked the technician to bring in a pen to try to get a different reading.   I'm thinking "uh-oh".   And yes, in fact, in two weeks time my pressure jumped from 11 to 27.    Unexpected and disheartening to me.   27 was essentially the pressure that got me into surgery - and now - just after one month after surgery, I am back to where I started - less one tube shunt in my eye.   A still swollen cornea, high pressure, double "shadow" vision.   Ugh.   I guess I can celebrate that I have just two tube shunts, not three - so my eye just doesn't feel quite as full.  

I then remembered "the ACHE".    In all of my over-zealousness that my pressure might be getting under control, I had forgotten the true meaning of the "the ACHE".   You see, over all the years, "the ACHE" has been the warning signal that my pressure has climbed or spiked.   To what, I never know.    But in this case, my eye was telling me, that the pressure was not staying down.    

If you have ICE, take note of what you're feeling.   KNOW YOUR EYE.    I can always tell when something is not right.    Oh - so many times - I just wish someone would confirm that I am imagining "the ACHE"!   But so far, I have been right most of the time.  

So the plan of attack - drop down to one steroid (Pred Forte) drop per day (I had already tapered down from three to two drops/day) because the steroid drops to control the inflammation & potential rejection of the cornea transplant can cause increased eye pressure.   Add an additional drop daily to my glaucoma medication - in this case Xalatan with my ongoing twice a day Cosopt.    I see the doc again in two weeks.   We'll see.

So in this mystery of a disease & its complications, I'm continuing on through the journey.   So many things to try to correct - and so many variables to deal with.   Honestly, I just need a little break and a little good news for a little bit longer than two weeks. 

Oh well, I have been so busy with life - that I'll just try to push this aside until I have to face it again in two weeks.    In the meantime, I will live life today & tomorrow & the next, & next.........      

Game of Cards - Game of Life

In my last post, I mentioned I ventured to have a garage sale despite having surgery a week earlier.   In my down time as I waited for customers, I grabbed a book off my bookshelf entitled "The Old Farmer's Almanac Sampler".   It consists of quotes and advice that was published in the annual periodical throughout the years.    Appreciating the wisdom and courage of the generations before us, I really enjoyed perusing through this book. 

I was drawn to one particular quote that I felt was so appropriate as we all deal with life's little struggles and ailments.   It is from 1907 and is attributed to Josh Billings:

"As in a game of cards, so in the game of life we must play what is dealt to us; and the glory consists, not so much in winning, as in playing a poor hand well."  

Ahhhh, there is that attitude thing again.   The triumph is all in how we CHOOSE TO RESPOND to whatever life give us!    This has been a lesson of the ages - but one that we must be reminded of often.  

LIVE TODAY!  CHOOSE JOY!  ALL IS WELL!

Springtime! Time to LIVE it!

Whew...it's the middle of spring - it's been almost two weeks since my "tube shunt removal" surgery - and no update!    A little on that later. 

First of all, within the past week or so I have received a couple of comments from new fellow ICE readers.  Thank you & welcome!   I'm so glad you found this site.   After years of me feeling alone battling this ICE thing, I created this blog in hopes that others diagnosed with this disease, might find it and know they are not alone.    I don't have answers - but I have feelings and thoughts and sometimes I share how I deal with it.  It's my form of therapy!   Please know, I always welcome your comments and thoughts - because it helps me too - knowing that I'm not the only one out there!  Through this blog, I know of at least six of us ICE patients - plus several friends who check in every once in a while.  Thank you everyone.

Second, it is springtime - and that means multitudes of activities and things to do!   I really don't have the time, nor the desire. nor the energy to deal with surgery recovery and follow-up doctor appointments, let alone the every day nuisances from this disease - but I must.    But I MUST ALSO LIVE TODAY - LIVE THIS SPRING!    SO just a couple of days after surgery, I went to a couple of games of my son's baseball tournament.   Fortunately, two games were during daylight hours - so sunglasses "hid" the evidence.   One game was at night - but I bared all - swollen, red, teary eye, no eye makeup - just my glasses.    It wasn't pretty - but I was LIVING and enjoying my family - and quite frankly, that's all that is really important.    Even last week, I held a garage sale in my neighborhood garage sale event.   Once again, it wasn't pretty - but I got rid of stuff, made a little cash and LIVED!    There are end-of-year school activities, middle school transition activities, more baseball and soccer, gardening, more of lots of things.   And I want to LIVE them!  

Okay, finally for the update on surgery.   It went fine.  It was a tube shunt removal in the lower inner quadrant of my eye with more patch grafting (ugh!) and an ECP to zap some of those fluid producing cells to try to control the pressure.  My doctor said he was very glad that the tube was removed - for it wasn't doing any good - except cause trouble.  As mentioned earlier, my eye was very sore for a few days and there has been lots of tearing probably due to the sutures.   The good news is the pressure was "9" the day after surgery and "11" one week after surgery.   The "not-so-good news but need to give it more time" is the cornea is swollen (but it was like that before surgery), I'm still experiencing those "double shadows" which is frustrating, and personally and honestly, I'm struggling with the way my eye looks.   I have more I want to share - but I'll leave that for another post.   

Remember....

LIVE TODAY
LIVE SPRING
CHOOSE JOY 
 
We may need to remind ourselves often, but that's okay!    

More Surgery! Tube Shunt Removal and ECP

Did I just write MORE SURGERY???   Yes I did!     Can I say "Disruption" and then turn around and say "Grateful"?    You bet I can! 

GRATEFUL for Grape Hyacinths growing in my garden too!

At my glaucoma appointment this week, surgery was scheduled for Wednesday, April 11.    My 11th eye surgery on the 11th!    As much as surgery disrupts life for a bit, I am looking forward to it - because it will hopefully address multiple issues.   

Bottom line, the tube & plate on the lower nasal side of my eye will be removed and I will also undergo a laser surgery known as EPC (which basically shuts down some faucets of aqueous fluid - more on that in another post).   

So why is a tube shunt being removed?    

First of all, one of the complications of glaucoma tube shunts is that they, over time,  may get exposed to the outside of the eye and cause a risk of infection.    This is the second time this tube has done this - so rather than continually deal with it with no real benefit (this tube has never really "worked") - it's gone! 

Second, this particular tube shunt is known as a Baerveldt.    The plate of this type of shunt lies in/near the eye muscle - and one of its complications can be strabismus and double vision.   I have noticed for several years now that when I look at my right eye in the mirror - it somewhat floats up and outward.   Since my last DSAEK six months ago, when I could start seeing a tad better, I often see ghosting & floating double images.    Honestly, it has been driving me a little bonkers over the past couple of months.   So HOPEFULLY, by removing this tube shunt, my eye may straighten up a bit and the double vision will subside.   

Third, getting the tube shunt away from my endothelial transplant will be a good thing.   No tube near or against the transplant tissue - less chance that tissue will get damaged - thus reduced cornea swelling - meaning being able to see clearer!   

So based on all of this, I am GRATEFUL this is a path we are going down.   I took my doctor's "first available" surgery time slot - I am willing, anxious and ready!

So what about my eye pressure?   Still a little high - but this is where the ECP comes in.   More on that later!  

CHOOSE to LIVE today!   BE GRATEFUL!    ALL IS WELL!