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!
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