Wednesday, August 27, 2008

Tomorrow... Again!

No neuro. Tomorrow will go see at 10- sure nothing will turn up and this is just a process of elimination move.

Good news- I have a dislocated lenses diagnosis---- "Ectopia Lentis et Pupillae"! Shoot. I thought it would be named after me! Talk about rare! SHEESH! I do love the doctor that told me this info today. He is pure smarts.

Also found a new eye clinic to work with today where they have surgeons that have fixed lenses of Marfans Syndrome (the most common disease w/dislocated lenses as symptoms but still totally rare). So this is great news! God works things out so well. Just as I was getting ready to run down the street singing "I love Trash" (Sesame Street reference) wearing a sash that says "Queen of Crazydom" on rollerblades, I decide to call the Dr. Smart Genetics Guy's office and upon blurting out my desperation the lady said, "Is this Gillian Nichols?" to which I said tentatively, "Yes..." Then she went on to totally help me out. I can't tell you how much this was God's work. It is incredibly difficult to just happen upon the person you need when calling a clinic with 20 or so doctors. WOW!

So no surgery on Sept 2. Next week will go in for more testing with new surgeons as they will be putting the lens in the posterior chamber as opposed to the anteriochamber which would have eventually caused me Glaucoma. Another showing of God's helping today. So while I thought this day was going down in flames it turned around for the better.

I also got to talk to my Sis-in-love briefly today which was great! Sorry I had to go Amy! Doctors calling!

And now I must prepare for the watching of the Project Runway. Did I tell you I sewed Leelah a dress finally? This was done of course pre-sort-of-eye-crazy-kindof-blindness. It is super hard for me to type, but I have to do something I used to do. No driving, hard to see TV, and no reading is driving me slowly insane.....

1 comment:

GBak said...

I came upon your blog through a Google Alerts search for Ectopia Lentis.

My name is George Bak. I have a son, Nicholas, who is two, who was diagnosed with Ectopia Lentis et Pupillae, like you, with no apparent genetic cause.

I was very interested to read a bit about your experiences to date, and wish you all the best with the surgery.

Finding persons with EL is few and far between, especially without the Marfans, etc.

I would very much like to share experiences. If you are inclined perhaps we could exchange a note from time to time?

Again, best wishes for a successful lens implant.

My email :