Re: Eye Disease/Clair

[Guest guest]

Hi, Clair,

I was diagnosed in Oct. with Graves and at the very same time my eyes kicked

in with burning, itching and irritation for which I used Genteel (sp?)

lubricant drops around the clock. They were also particularly bad when

shopping with flourescent lights overhead. I also had a tightness when

rolling my eyes upward. After a week or two on Tapazole, my eyes were about

85% better. Now they seem to be okay most of the time except if I don't get

enough sleep, have a stressful situation come up or take myself to the point

of exhaustion overdoing something which is not uncommon for me.

After going to two local eye doctors who knew ZERO about TED , (I guess TED

is not a biggie in medical school when you are studying to be an

opthamologist despite the fact of its disasterous effects on the eyes) the

endo recommended an eye doctor in the city. He said I had mild TED and

pointed out my double vision in my left eye during upward gaze (I never

really noticed it before) but since I reacted so well to the Tap he was

cautiously optimistic. My left eye " feels " bigger to me when I put my

fingers on both eyes but that would make sense since there is double vision

in that eye and the muscle is probably inflamed. You can't see anything to

look at me but I KNOW it is there ever so slightly. I also thought my iris

looked different. My husband and others INSIST otherwise though. Anyway,

the TED and the whole eye thing going on makes the Grave's part seem like a

walk in the park to me. I was a complete wreck about the prospects of

worsening eye disease at first but I've sort of " grown " into the possiblities

if that makes any sense. I'm still scared but my " glass is half full " for

two reasons...1-I know the eye disease can be flucuate now so just because it

is bad at one point it doesn't mean you are all down hill from there, most

likely it will get better and 2-Worse case scenario-it gets bad-I'm misreable

for a period of time and then I have surgery (with a complete eye lift thrown

in...I would of earned it at that point!)

My friend's cousin was diagnosed with Grave's about 2 or 3 years ago and had

RAI. She doesn't see her much but ran into her in the mall about 1 year ago

and she said her eyes looked puffy, nothing terrible, just like she hadn't

had enough sleep. Then she learned from her uncle that she had muscle

and/or decompression surgery this past summerand finally about 4 weeks ago,

plastic surgery to remove all the fat accumualtion,lid lift, etc. Her uncle

said she feels great and looks years younger. She gave me her number so at

some point I'll give her a call. Anyway the reason I'm mentioning this story

is because whenever I get the WHAT-IF-IT-HAPPENS to me feelings, I think of

this one as a happy ending and probably typical.

Finally, my other friend summed it up best for me. She said, " , at least

you are not dying and will be around for your children " . And I guess we

can't lose sight of that fact. That no matter how bad we get (with a minutia

of exceptions) we will still be around to enjoy living and the people we

love.

Have a good day...