I'm Curious


Posted by rita molnar (Rita Molnar,rita molnar), Jan 19,2002,23:39   Archive
I've been hanging around the BB for a couple of months now, and I just have to ask....

How is it that you guys all know each other so well? Is it through the BB? Is it from meeting each other at the Conferences....Local Meetings????

Rita Molnar...in New Jersey...with her eyes wide open after getting botox injections a week ago Friday...no longer bumping into walls...happy that we're finally having some snow...Wishing all of you could feel as good as I do today!




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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by June in Toronto (June Floyd,June in Toronto), Jan 20,2002,07:32 Top of Thread Archive
Hi Rita, glad your botox injections worked so well and you are `feeling good'.

I've met only one gal who posts on this bb from San Francisco (Caroline) when I visited there, but she hasn't posted for a while. The other posters I've only `met' via this bb. I guess we have got to know each other, sharing our problems with beb (and sometimes other things) - they are a great bunch. Post long enough and you, too, will know them.

Have a great day.

June in Toronto




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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Virginia , Jan 20,2002,10:23 Top of Thread Archive
I'd say it's a combination of all those things you mentioned, plus some private emailing. Some of us have met in person at meetings or conferences, but if you stay on the board long enough, you get to really know the people through their posts. If you have never been to a conference, you ought to consider going to one. It's great to meet others with BEB and the doctors are very accessible. But even if you can't, just reading the BB and participating fosters a sense of community where we all feel like we know each other.

Virginia in AL, happy for your good day and hoping it last a while for you.




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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Shirley-Arkansas-USA , Jan 20,2002,11:37 Top of Thread Archive
Hi Rita,
It's a matter of perserverence. I've been posting for about 2 1/2 years and a few people have been on since the bb first started. Over time, you get to know the people that post on a routine basis. When I first looked up the bulletin board (actually my sons did and then sat me in front of the PC and said "Read mother") after I was diagnosed with BEB, I went back and read all the posts from the very beginning. I felt like I knew People that posted before I ever attempted my first post.
Since then I have met some of the people that post on the bb at the last two conferences which I attended. Our state support group is almost non-existant. And none of those people post.

Like Virginia was saying, some of us privately email. That little list has grown over the years.

I'm just as close to some of the people that I have never met (like Sally and Mindy) as some that I have met. But, you do get to know people when you read and post on the bb routinely.

Some of us bare our souls a little more than others. I tend to say what I think and wind up getting myself in trouble at times. I have gotten a little better about that.

Actually, all it takes is being here and reading and listening and responding. I do think that the "posters" get more out of the forum than the people that just read the bb.

I've posted a link to a group photo of some of the people that attended the conference last year in Arizona that post on the bb. Maybe that will help you with names and faces. Just click on the link.

I'm glad that your botox is working for you.

Shirley in Arkansas

http://www.blepharospasm.org/forums/beb/archive/16151.html#16151




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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Dee in OR , Jan 20,2002,12:47 Top of Thread Archive
Hi Rita,

Just stick around and you'll get to know us and we'll get to know you. Some of us have met. I went to the Conference last year, but somehow wasn't included in the photo session! I also e-mail with several of the people and have talked on the phone with some too. Where in Jersey do you live? I am originally from Philly but live in Oregon now via California. My family is still back east, except my mother, who lives with us!

Hope to see you posting more often now that you are part of our group.

Dee in OR




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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Kelly Saffell , Jan 20,2002,14:24 Top of Thread Archive
Up until yesterday I had never met anyone from the bb before. We know each other from posting and I correspond with some via email now. But, you are right, we are friends and know alot about each other's lives excluding the beb. People regularly ask about my daughters and that is a huge boost for me. I plan to go to the conference since it is in Texas and hope to meet my friends face to face.
Kelly in Dallas



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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Tim Johnson-PA-USA , Jan 20,2002,21:17 Top of Thread Archive
Rita,
Reading the BB and posting results in getting to know your new friends. It is amazing how close you feel to them, as we each struggle with BEB and other associated problems. This BB is where you find true understanding and help, because your friends here are experiencing the same problems. However, I must say that the Conference was so great for me, getting to meet so many of my BB friends in person. Now every time I post, or read a post, I have a visual image that is helpful and makes the BB even more meaningful. Thanks Shirley for posting the pictures--great memories!
Tim in PA, hoping to meet others who share this disorder, maybe at another conference.



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Re: I'm Curious

Re : I'm Curious --- rita molnar
Posted by Sally - in - Idaho , Jan 20,2002,21:31 Top of Thread Archive
Hi Rita,

You've gotten most of the answers above. It's true that we do seem to know quite a lot about one another. Like Shirley, I've been here about 2 1/2 years, and I was very hesitant to jump in at first. It took quite some time before I ever "spoke." Then things graudually became more familiar, I received private e-mails and phone calls, and now some of my very closest friends are among those who post on this BB. We share many of the bumps and thrills of our lives.

I'm glad you are hanging around. Keep with it, and I'm sure you will pick up some special friends, too.

Sally in North Idaho where we had a blizzard today. Both churches canceled their serices. The wind whipped and blew seven+ inches of snow like mad, now we are having a chinook. Nothing like changes.




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Re: Weather

Re : Re: I'm Curious --- Sally - in - Idaho
Posted by June in Toronto (June Floyd,June in Toronto), Jan 20,2002,23:00 Top of Thread Archive
Sally, your weather reminds me of the ad that impressed me - "written, directed and produced by God". It was put out by the weather network channel - neat eh?

June in Toronto where the weather is cold but calm. (beb/meige)




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Re: I'm Curious

Re : Re: I'm Curious --- Sally - in - Idaho
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Jan 21,2002,09:37 Top of Thread Archive
Hi Rita, we've met via e-mail and I think that is one way we get to know the people on the BB. I've talked to some on the phone. I read all the post but do not post often enough.

I have had a very bad time lately with the dry eye "thing". I don't know how I can have such problems with the scratchy, gritty, pain in the eyes with all the ointment and drops I use. I think I have tried every brand on the market and even some that the doctor recommended. I've tried covering up my eyes - my left eye doesn't close all the way and one night my cloth stuck to the exposed part of my eye - at least it felt like it did - but the right eye closes and it gets that same gritty "thing". Actually it feels like I have something up under the eyelid that I can't get out. I have even put the "eye protectors" that they put on my eyes after surgery, one night it worked but the next night it didn't.

Last night my husband suggested that I use my vaporizer (sp?). It makes sense - the heat in the house is dry and maybe that is causing the dry eye thing. I will use every night for awhile to see if it really helps.

I had my eyes examined for glasses last week and the doctor said that I had very dry eyes and gave me more samples.

I think that one reason I don't post much is the fact that I feel like I complain all the time but this is my life right now and I believe you all understand more than my faimly does. Also sounding off to you is really helpful becauses you also have been there - done that - as the saying goes.

Well, I've talked too much - got to go.

Joyce in NC - cold dreary day - I love it - cloudy days are my friends.




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Re: I'm Curious/joyce

Re : Re: I'm Curious --- joyce whitt/NC
Posted by Kelly Saffell , Jan 21,2002,10:15 Top of Thread Archive
I held my first support group meeting on Sat and several people have dry eyes (fortunately, that is not one of my problems). They use saran wrap at night. One person just gets a long piece, places over both eyes and then uses a night mask on top of that. Another makes up patches cutting circles out of the saran wrap and puts paper tape all the way around so that it attaches without any air pockets. This helps hold in moisture.

My grandmother has beb and dry eyes. Her dryness is caused from a tear duct that drains into her nose instead of her eyes.

Hope this helps-if you are like me, I'll try anything so it is worth a shot!
Kelly in Dallas




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Gritty Feeling in Eyes

Re : Re: I'm Curious --- joyce whitt/NC
Posted by catherine pender , Jan 21,2002,13:26 Top of Thread Archive
Joyce

I have the same thing happening and when I go to the opthomologist he kept saying it extremely dry eyes and would give me another brand to try.
One day I could not stand it any more. I called another opthomologist crying to the receptionist.. It was worse than ever. I managed to get into see him that same day and he said that I had a type of cold sore on the cornea and he sent me to a cornea specialist. I guess they all have their own specialty. He told me that the only way to get the proper diagnoisis is to be there when it is ripe. I really believe that I have had this for a long time and it comes and goes. It has to be treated with a steroid which I do not like to take for any length of time. There was a item in the last newsletter about steroids in the eye. I am now trying some homeopathic meds and go back to see the doctor on Friday.

Just thought I would pass this along. Maybe there is more to the gritty eyes. Remember, I went several times to see the doctor before he could spot it.

Catherine




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Re: Gritty Feeling in Eyes

Re : Gritty Feeling in Eyes --- catherine pender
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Jan 21,2002,16:58 Top of Thread Archive
Thanks Kelly and Catherine for your suggestions - I think I have tried every thing. This doesn't happen everyday but it does happen at least 3 days out of 7 on the average. I might go for 3 days straight in a row and have the scratchy eye than I might go for a week and then it happens again. I did go to an ophthalmologist here in town who I have gone to in the past and he looked at my eyes with all those lights (that hurts as much as the scratchy eye) and he never told me what he thought. He asked if I had some pain medication and when I said yes, he said go home and take it. This last time was the night after I had my eyes examined. They had dialated the eye and looked in the eye with those blue white lights and I just figured that was the reason that it happened. My pupils were as big as the blue in my eyes and I thought it took in more light and that dried them out. The other times it has happened I can't really said what caused it so there is no set pattern. I had even thought about going back to the doctor here in town when ever it happens again.

Joyce in NC BEB/Meige




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Re: Gritty Feeling in Eyes

Re : Re: Gritty Feeling in Eyes --- joyce whitt/NC
Posted by Evelyn , Jan 21,2002,23:29 Top of Thread Archive
I don't have BEB, but I have the gritty dry eye in the right eye, which is my only eye with vision. I use drops and it helps, but sometimes it happens three or four days in a row, then it will be okay again. I'm also having twitching high on the bridge of my nose, that's very annoying. It seems to come from my neck. I've been taking antibiotics for almost two weeks for a terrible rattle and fluid in my chest. That seems to be getting better. I will be finished with the antibiotics tomorrow night.
Evelyn in rainy Washington



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