conference/newsletter update/letter to washpost


Posted by Delaine Inman , Feb 26,2002,14:48   Archive
To summarize, I submitted an article on starting a support group for the newsletter at Shirley's suggestion. Mary Lou called and said it was good info and was too long for the newsletter. She asked me to present it at this years conference on Fri. from 4-4:30. I said yes even though I hadn't planned on coming to the conference. I still told her I hoped she would put the article in the newsletter for those who couldn't attend the conference. She suggested I do a brochure or handout about it instead. Later she emailed and asked that I edit it in half and she would put it in newsletter. I edited it 2 times and it will be in next newsletter. Yesterday Mary Lou called and said she had a senior moment and had forgotten she had promised the time she gave me to Bob and Don to talk about the BEB web page and bulletin board and would I take only 15 minutes and give them the other 15. I don't think what Bob and Don need to say could be done well in 15 minutes. It is too important and the only support group some people have or would have if they knew how easy it is to use and would use it. So I told her to give them the entire 30 minutes. So Kelly sorry I won't be coming to the conference and won't get to meet you there. We will meet someday somehow somewhere. I just have too many irons in the fire this year. I will probably wait until the Alabama conference in 2004 to do another conference. Anyway I just wanted everyone to know.
Alan and Nilda I loved your email to the Post and I'm so glad that Alan's got published. I resubmitted mine to the health email address. I haven't heard from them. I say keep sending emails! Mine is below.

Comments re: Feb. 19th article and picture, "I've got a new forehead, but it doesn't move." by Buzz McClain.

I really wish Buzz had shown us a before as well as an after picture, so we could have seen if he could keep his eyes open before the BOTOX injections he took for fun.
My before and after pictures would look quiet different. Too bad he didn't talk to one of the 1 in 10,000 people who have Benign Essential Blepharospasm (BEB) or as he so incorrectly called it, "facial twitching". Maybe then he could have not only correctly described the disorder, but he would have had a better understanding and respect for those of us who have it.
The article was very insulting to those of us who have this neurological disorder that has robbed us of life as we knew it before BEB and Meige Syndrome. My symptoms started in Jan. of 1999 and by May of 1999 I could no longer work as a nurse, drive, watch TV, go to the movies, go without dark glasses, ride in a vehicle or walk without my eyes trying to close. I was 48 years old at the time and had been a nurse for over 27 years and had never heard of BEB.
The so called "facial twitch" does not describe BEB. It is more like something behind the eyeballs with the force of a vacuum cleaner squeezing the eyes shut and you are powerless to open them. There is no known cause or cure for this often progressive disorder. BOTOX is the treatment of choice and the effects are temporary and varied. The 10 to 20 injections around the eyes and forehead are not fun or amusing. I would take wrinkles over functional blindness any day.
Buzz needs to get his facts straight and he owes me and a lot of others who suffer from BEB an apology. The least he could do is an interview and an article on someone who has BEB or I will be glad to write you an article and see if you want the rest of the story.

Delaine Inman, MS, RNC, HNC
TN Rep. for BEBRF
1118 Dover Dr., Columbia, TN 38401
1-800-337-2680 code 0-1
rustyfox@charter.net




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Re: conference/newsletter update/letter to washpost

Re : conference/newsletter update/letter to washpost --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Feb 26,2002,16:13 Top of Thread Archive
I look forward to reading your article, Delaine, in the next newsletter. How nice of you to give up your time at the conference to Bob and Don, but perhaps this is better for you as you have so much going on right now. Also, for sure, your newsletter item will reach a bigger audience this way.

Your letter to the Washington Post was great and I'm sorry they didn't print it. Mine was accepted, but not printed - so they have got an e-mail (one of many to go out) for not honouring their word on that - we'll see what happens. We've gotta keep trying.

best wishes. June in Toronto (beb/meige)




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Re: Excellent letter

Re : conference/newsletter update/letter to washpost --- Delaine Inman
Posted by Sally - in - Idaho , Feb 26,2002,20:23 Top of Thread Archive
Excellent letter, Delaine!!! I hope it gets results.

Sally in chilly North Idaho




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Re: conference/newsletter update/letter to washpost

Re : conference/newsletter update/letter to washpost --- Delaine Inman
Posted by Alan Phair , Feb 26,2002,21:24 Top of Thread Archive
Delaine, so sorry to hear that you are not going to be able to make the conference this year. My wife and I are probably going to go as Mary Lou has asked me to head up the Sunday morning panel discussions and give a talk on insurance coverage and medicare issues. This is something that I am sure yu could cover probably even better than I so if you wanted to do it, I am sure that she wouldn't mind. Besides, can you imagine me trying to limit myself to ten or fifteen minutes. impossible. Anyway, it looks like we will be going even though Houston is a long way from NH but I missed seeing all the friends I made on the BB last year and you are one of them.

By the way, I really enjoyed your response to Buzz Lightyear. It was excellent. You mentioned that mine was published. Did you actually see it in the paper or did you just think that based on the EMail I posted. I have not heard one way or the other and since I don't read, I certainly wouldn't be getting the Post in NH...Alan




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Re: conference/newsletter update/letter to washpost

Re : Re: conference/newsletter update/letter to washpost --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Feb 26,2002,21:38 Top of Thread Archive
Alan, Nilda posted a link to The Washington Post today and we read your letter there.

June in Toronto




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Re: conference/Shirley can help

Re : Re: conference/newsletter update/letter to washpost --- Alan Phair
Posted by Delaine Inman , Feb 26,2002,22:40 Top of Thread Archive
June answered your question. It was such a great letter and I'm so glad it got published. I sent mine to the letters@washpost.com several days ago and re-sent it today at the health@washpost.com. I hope they get dozens and dozens and decide to do more of our letters or an article.
I really wish I could come to the conference just to see my buddies like you. I really didn't need the expense of going to the conference. I'm trying to help my daughter and granddaughter and this herbal thing I've committed to doing for awhile is really rough on the pocket book. We have a trip to my husband's high school reunion in June in South Carolina. The end of March we have another trip planned to see my son in Jefferson, TX and taking Rusty's parents with us and stop in Hot Springs on the way back. I also will have to get a friend to take me to Knoxville for the state wide meeting that Mary Lou is doing in April. We will make it a long weekend and visit some friends in Gatlinburg and have some fun. I really appreciate your offer to let me do your spot. You sweet thang! I am just as long winded as you....maybe worse. I talk so slow it takes me 10 minutes just to say my name and where I come from, bless your heart. So you do have an advantage because you are not from the south and talk faster. I'm really sorry I'm going to miss hearing you. Shirley can time you and wave a flag when the timer goes off so you'll know that your time is up. I've never been to Philly, so who knows maybe I'll see you in 2003.



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Re: conference/Shirley can help

Re : Re: conference/Shirley can help --- Delaine Inman
Posted by Evelyn , Feb 27,2002,16:11 Top of Thread Archive
Hi Delaine,
You mentioned Jefferson, Tx. I have a brother and his wife, and their two married sons, and grandchildren who live there.
Evelyn, who has been having dry eye, and terrible shoulder, neck and back pain.



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Re: Stop and say hi

Re : Re: conference/Shirley can help --- Evelyn
Posted by Delaine Inman , Feb 27,2002,22:39 Top of Thread Archive
Tell them to stop by the Kennedy Manor and say Howdy. They may already know each other. My son is the greatest with personality and hospitality plus and knows almost everyone there already. He has been one of the sweetest gifts God ever gave me.



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Re: Stop and say hi

Re : Re: Stop and say hi --- Delaine Inman
Posted by Evelyn , Feb 28,2002,13:42 Top of Thread Archive
Delaine, You could ask if they know the Dale Downs family. I'll try to send an email with the info you posted.
Evelyn



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Re: conference/Shirley can help

Re : Re: conference/Shirley can help --- Evelyn
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 01,2002,05:43 Top of Thread Archive
That's awful, Evelyn. Did you say you have arthritis?



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Re: conference/newsletter update/letter to washpost

Re : conference/newsletter update/letter to washpost --- Delaine Inman
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Feb 27,2002,06:46 Top of Thread Archive
great letter Delaine. But I think my point that i have been trying to make is how many people get or read the Washington Post? It is excellent that you and the rest are putting this guy in his place. Don't we need a broader audience?



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Re: conference/newsletter update/letter to washpost

Re : Re: conference/newsletter update/letter to washpost --- Kathy in Atlanta
Posted by June in Toronto (June Floyd,June in Toronto), Feb 27,2002,07:38 Top of Thread Archive
I agree, Kathy, that we need a broader audience, but at this stage in the game ANY audience awareness is better than we have been getting.

June in Toronto (beb/meige) where we had snow overnight - its been so mild lately, this is ridiculous!




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Re: conference/newsletter update/letter to washpost/June

Re : Re: conference/newsletter update/letter to washpost --- June in Toronto
Posted by kathy in Atlanta (kathy,kathy in Atlanta), Feb 28,2002,04:18 Top of Thread Archive
We also had freezing weather and snow here, whereas it was mild before also. It explains the problems that were happening with my eyes. I hope my beautiful hydrangea bush didn't freeze. After it's only 2 blossoms last year, I was looking forward to it's cheerful show this year. I have it covered with a half polyester sheet, that i can't use because it scratches my skin.

--modified by kathy in Atlanta at Thu, Feb 28, 2002, 04:19:13




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Re:letter to washpost size of audience

Re : Re: conference/newsletter update/letter to washpost --- Kathy in Atlanta
Posted by Delaine Inman , Feb 27,2002,08:31 Top of Thread Archive
A broader audience would be nice, but I'll take whatever audience I can get. I would think that The Washington Post has a large circulation, but if only one person at a time will listen, we may reach the one person who needs to hear us. I hope we aren't seen as trying to put people in their place, but getting them to consider what it might be like to be in our place. We can't focus on how we object to cosmetic use, but how much we deserve to have a voice and have our story told. The foundation was created to find the undiagnosed, support the diagnosed and increase awareness and funding for research for better treatments, a cause and a cure. We can't accomplish that if we are bitter about the cosmetic use or pointing a finger at Allergan. We will accomplish more if we keep our eyes on what we are for and not what we are against. To get attention we do have to respond to articles and news stories. I'm still patiently waiting for the news paper article in my home town paper. It wasn't in Sunday's paper as they had told me it would be. It is a small county paper, but to me it is still important because there may be someone who needs to hear what I had to say and will benefit from my story or it may benefit our cause. I'm not going to give up on trying to get my message out there and I'm not going to worry about how big the audience is. You never know, what may seem small can lead to something bigger and more important. It gets frustrating, but we have to stay positive and never give up or think we can't make a difference one at a time. I do understand the point you are making. If you find a broader audience and they need a speaker or a writer, let me know and I'll be there for you.



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Re: Re:letter to washpost size of audience/Delaine

Re : Re:letter to washpost size of audience --- Delaine Inman
Posted by kathy in Atlanta (kathy,kathy in Atlanta), Feb 28,2002,04:28 Top of Thread Archive
Thanks, Delaine! I am not bitter about Botox's cosmetic use, but if each person who was having this treatment was also aware of us, I think that would help.Hmmm, how are we going to do that?
Also i keep thinking about that article in National Geo.; the one where they did a short portrait of zip code Beverly Hills and the frequent use of cosmetic botox use there. I think they need to follow up on this.
Who is the one person you are referring to? or are you just using "one" in the broader sense?

--modified by kathy in Atlanta at Thu, Feb 28, 2002, 04:31:11




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Re: Re:letter to washpost size of audience/Delaine

Re : Re: Re:letter to washpost size of audience/Delaine --- kathy in Atlanta
Posted by Delaine Inman , Feb 28,2002,10:10 Top of Thread Archive
The ONE I was referring to was each ONE of us making a difference OR some ONE out there needing to hear what we have to say. A perfect example of "ONE" was Mattie Lou. That is so weird to me that the National Geographic did an article like that. I agree with you that they should do one on the Medical reasons for BOTOX. I didn't mean to imply that you were bitter......We all have our moments....I was using that for all of us....including me.



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Re: Re:letter to washpost size of audience/Delaine

Re : Re: Re:letter to washpost size of audience/Delaine --- Delaine Inman
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 01,2002,05:41 Top of Thread Archive
Thanks for explaining that. I thought the Nat. Geo. article was weird also, they usually are not that superficial.



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Re: conference/Delaine

Re : conference/newsletter update/letter to washpost --- Delaine Inman
Posted by Kelly Saffell , Feb 27,2002,12:26 Top of Thread Archive
Sorry I won't be meeting you at the conference. I was looking forward to it. Mary Lou called me last week and asked me to be on the patient panel on Sun discussing SSD. I wasn't planning to stay for Sun but now I will!
Kelly



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