TED (severe)

[Guest guest]

Do many group members have what they consider severe TED?

I try my best to be in an up mood, and I know that mood and

stress (or lack thereof) really affect my eyes. Yet some days like

today I am totally debilitated by eyes that are so inflamed that I

can't leave the house. I can't even sit in a room without the

curtains down. More specific, both of my eyes feel so gritty that it

hurts to open them & it also hurts to shut them. Getting sleep is

more of a problem than help. I can't use tape on my eyes, as

that seems to increase inflamation. Yet if I sleep " wrong " and

get my eyes rub on the sheets or pillow, my eyes sometimes get

scratched, etc. I've had corneal ulcerations...but not in the past

year. I've had terrible double vision, but that is 95% gone for

almost a year now. And now I'm having trouble with my eyelids

that just aren't long enough to stay closed when I sleep. Anyway,

sorry, I'm rambling. I'm just so upset. I'm leaving on a trip to

Montreal, Toronto and Boston on Wednesday morning, and if I

had to pack today, I'd just open a suitcase and throw whatever I

could find in, and deal with it later. I can't postpone the trip

without creating a major relationship problem. Ironcially I haven't

even gone through my last minute 2 day panic of getting ready

yet...since my eyes hurt too much to deal with it. I've seen my

neuro opthomologist, an endo who is alright, and my great

alternative healer...all helpful, but all unable to offer any

suggestions that I haven't already tried. The PTU is helpful, and

the Genteal eye gel & sterile artificial tears are great, and I'm

taking 2 tablespoons of flax oil daily. I'm also taking

homeopathic baths once a day. I don't know what else I can do.

Well, for anyone who read all of this drama above, thank you. I

guess I'm just feeling sorry for myself. And that doesn't really get

anywhere.

Thanks.

Best,

Ron

San Francisco...GD since 4/01, taking 150mg PTU a day (50mg.

every 8 hours). Have no GD current problems except for extreme

TED eye problems.