Re: Article finally showed up in Sunday Paper today
Hello Delaine, I have just read your article in your newspaper, and it was very good.I enjoyed seeing your picture with your rose tinted glasses and Your BEB shirt, just like mine. Thank You. Edith Nalepa
Re: Article finally showed up in Sunday Paper today
Delaine-Wonderful! I just e-mailed my thanks to the Lifestyle Editor. Mentioned, too, that people all over the world are reading the article tonight, thanks to your posting the link. And I'm very impressed with your resume, too! Mary
Re: Article finally showed up in Sunday Paper today
Very impressive, Delaine. You are doing a wonderful job of getting the message out into the world. Thanks for all your efforts.Sally in North Idaho
Re: Article finally showed up in Sunday Paper today
Congratulations, Delaine, on getting the word out. It's a good start on educating others about BEB.
Evelyn
Re: Article finally showed up in Sunday Paper today
Great guns, Delaine - wonderful articles - well done, thats great awareness. Keep `em coming.June in Toronto whois very...impressed.
Re: Article finally showed up in Sunday Paper today
Excellent, excellent, excellent! You have said it all, except for the hopelessness that kicks us in our gut on the bad days that we must all wrestle out of. Too bad they mispelled Plepharospasm?
Re: Article finally showed up in Sunday Paper today
I didn't notice they mispelled Blepharospasm, just myectomy and left off that it was a partial or limited myectomy. There were a few other little words left off and they assumed Rusty was the father of Chris and Elisabeth(which they also misspelled), but all in all It was a very good article and no body ever gets it perfect. You can scan down on the list of articles in lifestle and read the second article which she also pulled a lot from for her article.
Re: Article finally showed up in Sunday Paper today
Delaine, i just printed both of your articles because you do explain it in depth and i am so tired of trying to do this. i didn't realize that you had had the surgery for this.
Re: Article finally showed up in Sunday Paper today
Thanks Delaine, Have read your article, and It was great! You have done us all a great service. Corrie
Re: Article finally showed up in Sunday Paper today
Congratulations, Delaine, that is a wonderful article -let's hope it is read by lots of people. "Rare brain disorder" ? -I suppose that's what it is - makes it sound more interesting , anyway.Lyn
Re: Article finally showed up in Sunday Paper today
It really is a rare brain(neurological)disorder and does sound more accurate than a "facial tic" or "facial twitch" or some of the other things it gets called. Made an eye catching headline and then they did give the definition out of the BEB brochure from my article. It got my attention so I know it made many others read it, too. I'll take it.
Re: Article finally showed up in Sunday Paper today
I sent the link to the Washington Post and told that to read it and see "what they missed out on" by doing a wrinkle-kind of article! If they get in touch with you - go for it.June in Toronto (beb/meige)
Re: Article finally showed up in Sunday Paper today
Girl friend you are so bad! I love it! I hope they look at both articles. Thanks. I went down to get extra papers from the newspaper today and would you believe that they charged me a $1.00 for each day old paper. I said, I'm featured in Lifestyles and wrote an article (and received no pay for it) and you are charging me....you're kidding right? She said "well, that makes it even more valuable." as I handed her $4.00 and picked up the last 4 on the counter. The NERVE,I couldn't believe it!
Re: Article finally showed up in Sunday Paper today/Delaine
The nerve is right!! I can't believe that either.
--modified by Kathy in Atlanta at Wed, Mar 06, 2002, 05:51:37
Re: Article finally showed up in Sunday Paper today
Awesome Delaine! I forwarded your email to my parents. Rare brain disorder is much more fitting than the "soothes facial tics" that I got in Ladies Home Journal!
Kelly
Re: Article finally showed up in Sunday Paper today?Lyn
Good comment , Lyn. I'm afraid if i said that people would try and look for odd behavior in me. We all know that Delaine is very intelligent and maybe this is not the right word for it, although it does occur in the brain. I think i prefer "neural"; short for neurological, pertaining to the muscles. Would that make sense?
--modified by Kathy in Atlanta at Wed, Mar 06, 2002, 05:47:28
What ails us?
I love the saying,"What other people think of me is none of my business." How we describe what is ailing us is a very individual choice based on many things. Many people around here would not understand the term neurological or neural disorder. I do often describe BEB as a rare brain disorder which affects the muscles of my eyes. It just lets them know it is not an eye problem and it is serious. I don't think that makes people look for brain damage. Many days I do feel a bit brain damaged in an odd sort of way....like when I step off the elevator and it takes me a few seconds to decide which way to go, or which direction to go in the mall or store to get out or driving and things don't look familar for a few minutes or I'm standing in a room and I have no idea why I am there or I can't remember a name or a word I should know or I've left the burner on the stove on for several hours and haven't noticed it and my husband gets up and sees it or I can't remember to even to look at the calendar to see the appointment I have written down and I miss it and I get fired by my hair dresser for missing or changing 2 appointments....I've heard others say the same things go on with them. And this stuff was happening before I was taking medication for BEB. I have Fibromyalgia and it is also a rare brain disorder affecting different muscles. Fibromyalgia has a term called Brain Fog to described the things I just described that happen to me. I think you should describe it with words that you feel comfortable and others can understand. Like I said it was an "EYE" catching line. I've had several calls and email from around town.
Re: What ails us?/delaine
My gosh, Delaine, i certainly wasn't criticizing you! My eyes shut down several times at my hair appointment a few days ago. It was a bit embarassing, but it hadn't happened before so noticeably and surprised even me.
Re: Article finally showed up in Sunday Paper today
DELAINE,THANK YOU SO MUCH FOR BEING SO GUTSY. GO GIRL!!!! IN ADDITION, I THANK YOU BECAUSE I PRINT THIS KIND
OF THING AND MAIL IT TO NON COMPUTER RELATIVES, ETC.
WHO FIND MY ILLNESS HARD TO COMPREHEND BECAUSE
IT IS SO RARE. IT SO NICE TO KNOW YOU. RHONDA COUTANT
Re: Article finally showed up in Sunday Paper today
Congratulations! Perseverance pays off!You have pulled off a major coup in the fight to deal with this disorder. I am VERY proud to be your friend. --- Lynn
Re: Article finally showed up in Sunday Paper today
Delaine - Congratulations - you did an excellent job. You represented all of us who have this disorder. You made me cry when I read the 5 stages of grief. Somedays I think I have finally accepted it but then on another day I might be back in the grip of depression especially when the Botox doesn't work. But with the help of you and all the good people on this BB I at least have a place to vent my frustrations. I also am going to pass this article on to my friends so they will understand this disorder. YOU GO GIRL!!! Joyce in NC
Poem with article no one has printed&Thanks to all
Now What Lord (The Stages of Grief)
Denial
Now what Lord?
What do I do now?
This is not what I expected.
The rug was pulled out from under me.
In an instant everything changed.
This can not be happening to me.
Anger
Now what Lord?
What do I do now?
This is not fair!
How could this happen to me!
Damn this disease!
It is stealing too much from me!
Bargaining
Now what Lord?
What do I do now?
Can I make you promises?
To do more?
To give more?
To try harder?
Depression
Now what Lord?
What do I do now,
That I can no longer do
What I’ve always done,
What I have loved doing,
What I have always done so well?
Now what Lord?
What do I do now?
I am in unfamiliar territory,
Feeling like a duck out of water,
Lost and alone in a strange land
I sit patiently in the silence and wait and wait and wait.
Acceptance
Now Lord, I know.
Now I do.
What I can do.
As well as I can do it.
Loving what I can do.
Happy for all the things I can do now.Delaine Inman, September 16, 2000
Re: Poem with article no one has printed&Thanks to all
I believe you posted this once before, Delaine - I enjoyed it then and again this time. Thanks for ALL your efforts.June in Toronto
Re: Article finally showed up in Sunday Paper today
Congratulations, Wonderful article. Hope it goes around the world. You are a real asset to the BB & BEBRF.
Joann in Ark.
Re: Article finally showed up in Sunday Paper today
Delaine What a wonderful article.Wish everyone could read it.
Thanks a lot
God Bless Colleen in IL
Re: Article finally showed up in Sunday Paper today
I just read your story. It is both heartrending and heartwarming.
Evelyn
Re: Article finally showed up in Sunday Paper today
Great article, Delaine. You did us all a great service. Thank you.
Christel
Re: Article and poem
Thank you for for doing the article and for sharing you poem. You make us proud!
Re: Article finally showed up in Sunday Paper today
Delaine,Congratulations on your article! I really enjoyed reading it. Especially about your personal experience with BEB. You sound like a wonderful person with a wealth of talent and experience. It would be great if you could be a presenter at next year's BEBRF conference in Philadelphia. It's o.k. to hear from the professionals but I really think it's more helpful to hear from someone else who has the condition. You answered a lot of questions I've been recently having about my sister's being able to drive for a short distance some days and not at all other days. Also, when she is at her job ( a very demanding front office position) meeting the public on a daily basis that her eyes are forced to stay open. Yet, when she goes home for lunch or hangs around her apartment on the week-end, her eyes shut down - -unless she "teases" them to stay open by, say, by potting a plant or some other way to focus. ANYWAY, YOU DID IT, GIRL! YOU SCORED A BIG ONE IN GETTING THE WORD OUT.
p.s. I'm curious, what article from the newsletter and pamphlet did you give the reporter. Thanks.
Re: ... way to focus
You hit the nail on the head, Geri ... "potting a plant or some other way to focus." That intense focusing seems to be the key. About four years ago, when my eyes were at their worst and I'd just FINALLY been diagnosed, I took on a project for the school of sorting, alphabetizing and filing hundreds and hundreds of library book cards. It looked like a hopeless project to most, but I got it organized and sent back in good shape after a few weeks. I worried about having agreed to do this, not knowing how I'd manage, but surprisingly my eyes worked just fine when I was "focused" directly on those little cards.Sally in North Idaho
Re: Article finally showed up in Sunday Paper today
I had an article in March/April of 2000 of the BEBRF newsletter which I gave to the reporter. I also had an article in the March 2000 and will have one in the next newsletter March 2002. I had a nice article in my hometown newspaper. The whole county has 5000 people and they didn't have a webpage to link.
Thanks for your kind words. I'm glad it helped. I agree we need more of "us" to be asked to use our gifts and talents at the conferences. Like I've said before, nothing is more exciting to me than teaching and sharing to an audience.
Re: Article finally showed up in Sunday Paper today
Delaine,I thought I was blown away by the article you intervewed for with the reporter from the Daily Herald but it wasn't until I went back and printed out your articel that I was touched in a way that transcended information and statistics. Thank you for your heart-warming words of wisdom to all who suffer from BEB. I remember the first times when my sister came to pick me up at a train station in VA and she was squinting unbearably from the sun. What I've been doing recently is nagging her about Botax appointments and getting all her ducks in a row in case she has to leave her job on disability. I had no idea of the emotional toll this must be taking on her - she recently told me of bumping into people outside, and feeling her way down the hallway of the high-rise she lives in. You wrote a beautiful article, Delaine, and I am going to send both articles to my sister. She too has a positive outlook on life and thanks God for her blessings every day. I'M THE ONE WHO HAS THE PROBLEM COPING. BESIDES PRAYER, I NOW HAVE A BETTER INSIGHT INTO DEALING WITH BEB. (FAMILY MEMBERS DON'T KNOW WHAT TO DO) THEY JUST KNOW SHE'S MIA FOR GET-TOGETHERS RECENTLY. OH, AND THANKS FOR MENTIONING GIVING YOURSELF PERMISSION TO ASK FOR HELP.
Re: Article finally showed up in Sunday Paper today
I pulled up the link today and got March 6. Is there anyway I can read the article. Do you have it. I left my email address. Ann Doyle
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