Posted by: Cynthia ®
03/20/2004, 08:48:50
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Welcome, Sandi, and thank you for your post. While we certainly are in sympathy with you on this disorder it was a great encouragement to read your positive assessment that you have become a stronger person. From reading the posts on this board it's very apparent that many of those posting have become stronger persons but perhaps don't realize it. It's great that you have learned to use the computer to get information and especially that you have found this wonderful support board. You put your thoughts into writing just fine!
Cynthia in IL hanging in there ...
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Posted by: Sandi in Pa ®
03/20/2004, 11:21:03
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Thank-you Cynthia after reading more it just brings back soooo many memories about my life before its good to be able to come to grips with what we have It brings tears to my eyes when I read some of the comments because the memories are all flooding back and they aren't good ones. I have had about 2 good years of seeing but now am starting to have problems. I know I can find alot of help and support here. Thanks again my eyes are starting to blurr so its time out for me
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Posted by: dottie ®
03/21/2004, 11:21:54
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Hi Sandi, Dr. A also did my upper myectomy 15 months ago. The recovery has been a slow process. I have not had botox since the surgery, but am considering it. It seems after the surgery my eyes stayed open much better than they do now. My mornings are very good, about 2 in the afternoon they start closing, so I put genteal drops in them and rest and usually fall asleep then I can function again. I have blur vision when I get up but then it clears. Good Luck Dottie also from Pa.
Modified by dottie at Sun, Mar 21, 2004, 11:22:14
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Posted by: Nancy from PA ®
03/23/2004, 08:38:12
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Hi girls...
I live in NE PA.... about half-way between Scranton, PA and Binghamton, NY...near the Elk MT. Ski Resort in Union Dale.
Just wondering where you live in PA....
I have had BEB since 1998 and am now the NE PA Area Rep for the BEBRF... I hold a support group meeting in Scranton every year.
Maybe you both live close enough to attend.
Nancy from NE PA where it is supposed to be Spring but is only 28 degrees this morning.
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Posted by: dottie ®
03/23/2004, 14:43:24
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Hi girls, I live in Butler, Pa. about 35 miles north of Pittsburgh, I have been in Scranton for a little league baseball game. I would love to attend a support group meeting. When the meeting is going to take place I certainly would like to know. I have never attended a support group meeting. Sure has been cold. Thanks Dottie
Modified by dottie at Tue, Mar 23, 2004, 14:43:52
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Posted by: June in Toronto ®
03/21/2004, 06:48:46
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Hi Sandi and welcome to the bulletin board - I'm glad, after all your trials and tribulations, you have found us as we really do understand and care. You have been through a lot (most of us had trouble getting this disease diagnosed) and I can't answer why, after 2 surgeries, you are experiencing yet more problems. Perhaps others who have had the upper and lower myectomies will respond to you. I've had beb/meige for 9 years and respond quite well to botox injections, so I'm one of the lucky ones. Let us know how you are doing and I'm sure you can help others who are at the beginning of learning about all this stuff. Take careJune in Toronto, Canada
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