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.
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!
Hi Deb: I was diagnosed with ICE syndrome when my daughter was about 9 months old. The symptoms first appeared when I was pregnant and my husband at the time noticed the pupil in my left eye had become "comet shaped." At the time I lived in a relatively small town and while I went to a number of doctors, both GP's and specialists, no-one I saw was able to explain why my pupil was continuing to elongate.
ReplyDeleteIn September of 1997 we returned to my husbands hometown of Memphis. By then the symptoms in my eye were becoming progressively worse, my iris had all but essentially disappeared and I was experiencing periodic episodes of extreme light sensitivity, sharp shooting pain through the left side of my head and "eye-aches." I know now this was in part caused by the untreated eye pressure fluctuations. In absolute agony I walked myself up to my mother-in-laws local eye doctor, and while he had no idea what was going on he happened to have played tennis that weekend with an eye specialist that he was sure would be able to help me.
Somewhat skeptical that someone would finally be able to tell me what was going on I made an appointment. And it was with some incredulousness on my part that in less than 30 minutes of walking into the examination room I was given a diagnosis... "I believe you have Iridocornealendothelial syndrome" was the announcement. After 18 months of searching for answers my wait was over, this brought with it relief from fear of the unknown to fear of the known. However, I was fortunate that the specialist I saw in Memphis had spent a good deal of time studying this particular syndrome.
I have had one treb surgery, a revision, and a re-build of the treb. In October I will have my first DSEAK procedure, with a cataract removal, and artificial iris insert (my iris completely atrophied and is described as having rolled itself up like a paper scroll. There is no technique to "draw it down" again and because I'm becoming more and more hypersensitive to light there is hope the insertion of the iris will alleviate some of sensitivity I experience.) I am on one-hand optimistic that things will go well, on the other I am afraid . . . afraid of what I know is to come . . .
I like your comment about interviewing specialists and being comfortable with them. I have been to some of the best/well-known eye doctors in the Pacific Northwest and yet due to their arrogance I have chosen to be seen by those who have a more compassionate/empathetic approach... and here I have to leave off as I'm out of time for an appointment. . .but in a nutshell this has been part of my experience over the last 15+ years . . .
I am so happy to have come across your blog. It has occurred to me many times over the years that those of us with ICE syndrome could benefit from supporting each other and knowing we aren't alone in the journey we have in common. I look forward to reading further posts and sharing more of my experience/s too.
Stay Strong in Life's Journey
Juliette
Juliette, thank you for sharing your story! Your experiences are valuable to this blog and our support of each other! Keep us informed and take care. ~Deb
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