Blepharospasm Bulletin Board

kudos to Delaine!
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Posted by: Beth
03/30/2004, 07:37:19


Thanks for the great article "Hope Floats" in the new BEB newsletter. I feel like I've been in the anger mode for some time. My anger tends to be low key so its not real evident to those around me or myself soemtimes. Work was, is stressful. The 4th round of botox was just okay. An avid reader, I have had to cut back on that significanlty. And questionning how much longer I can work. Hope Floats was inspirational!!! SO, I"M TAKING ON ANOTHER DAY.



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Re: kudos to Delaine!
Re: kudos to Delaine! -- Beth Top of thread Archive
Posted by: June in Toronto
03/30/2004, 16:13:56


Good for you - I found the article inspiring as well. I posted about it a week or so ago but Delaine seems to have `gone' for a while. Hope she reads her tribute posts.

June in Toronto, Camada




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Re: kudos to Delaine!
Re: kudos to Delaine! -- Beth Top of thread Archive
Posted by: Delaine Inman TN State Coordinator
03/31/2004, 06:49:49


I just posted but it didn't show up on page one. Had to get to it by asking for posts from today. Thanks for all the sweet feedback. Glad they published the article. It helped me to write it and if it inspired one other person to have TRUE HOPE that Floats it was worth sending to Mary Lou. God Bless.



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Re: kudos to Delaine!
Re: Re: kudos to Delaine! -- Delaine Inman TN State Coordinator Top of thread Archive
Posted by: Diane in Virginia
03/31/2004, 08:24:10


Welcome back to the bb, Delaine!
Your "Hope" article is so inspiring!
You should have a regular column in the newsletter!
Diane



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Re: kudos to Delaine!
Re: Re: kudos to Delaine! -- Diane in Virginia Top of thread Archive
Posted by: Delaine Inman TN State Coordinator
03/31/2004, 11:11:05


Good to be back. Hey tell that to somebody who has the power....Mary Lou!! Thanks again. I've got a book of inspiring poems I'd publish and donate the profits to BEBRF if they would pay for publishing it. Maybe that will happen. There is a lot of talent out there. Maybe we should do a poetry book of poems of coping, inspiration and healing written by BEB people and use the profits for research. Any other writers out there interested???? I'll pitch the idea if there are others who would contribute.



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Re: kudos to Delaine!
Re: kudos to Delaine! -- Beth Top of thread Archive
Posted by: Kathleen
03/31/2004, 09:27:52


Thank you, Delaine. I, too, am still caught up in the anger and depression phase of adjustment. I've gained 15 pounds since my diagnosis last fall (not sure if that's because when I'm eating, the spasms are less or if it is because I've used food to console myself) and have become somewhat of a recluse, leaving the house mainly to go to work and do the things I absolutely have to do. I just received the issue that Hope Floats was in and after reading it, have decided it is time to get off my "pity pot." I have decided that while I can't control the spasms or any progression of this disorder, I can still control other things in my life and have decided on a new diet and exercise plan. I am in the process of prioritizing the things I did before the spasms got so bad so that I can continue to do those things that were very important to me, like going to my kids activities, even if my eyes are closed. I eventually would have gotten to that point on my own, I think, but the article and all the wonderful examples on this bulletin board have definitely helped. I'm quite sure I will still have days where I feel very sorry for myself, but know that this support system will help. Thank you!



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Re: kudos to Delaine!
Re: Re: kudos to Delaine! -- Kathleen Top of thread Archive
Posted by: Delaine Inman TN State Coordinator
03/31/2004, 11:18:16


Yes we all have those cloudy days of the dark night of the soul, but the more we share and the longer we cope with a positive atttitude the fewer and the shorter those dark nights become. We have to be active with our minds and bodies. It takes a lot of energy to cope, but helping others and staying active gives us more energy if we do it in a way that doesn't drain us and learn what our limits are and how to say no and not now. I needed a break and I took it. We have to find what works for us. We have to have hope or we perish. We have to believe that we can handle things and we have to be willing to make scary changes and accept changes as part of our growing and healing. Thanks for being one of my teachers and friends.



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Re: kudos to Delaine!
Re: Re: kudos to Delaine! -- Delaine Inman TN State Coordinator Top of thread Archive
Posted by: Evelyn
04/01/2004, 10:05:45


Well put, Delaine. You're inspiring to me, as well.
Evelyn



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Re: Kathleen
Re: Re: kudos to Delaine! -- Kathleen Top of thread Archive
Posted by: June in Toronto
03/31/2004, 12:07:26


Good for you Kathleen - you go girl! You will feel better I'm sure with a more nutrional way of eating (no diets) and lifestyle. Keep it up.

June in Toronto, Canada




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