Yooh who! Anybody home? TN State meeting in east TN.


Posted by Delaine Inman , Apr 19,2002,22:39   Archive
Hi gang! Life has been a whirlwind and any extra energy has been going to the yard, flowers, friends and family. The state meeting in Knoxville, TN that Mary Lou had last weekend was a success and we had 49 people come. I thought that was good. About half were drivers/support people. I was given 10 minutes at the end to try to recruit someone to start a meeting in East TN. When I was done a minister who brought his wife who has BEB came up and hugged me and told me he thought I'd been called to preach. I told him I was called to get the word out and support others. Just give me a group to talk to about anything pertaining to BEB/Meige/Dystonia and I do get pretty passionate. I think I found 3 people willing to try to work together and start a group. I haven't had a chance to follow-up yet. My Nashville group meets Sunday.

Mary Lou gave a short lecture about not being negative about Allergan and FDA approval and reminded us that no one else was willing to take on making Botox because there wasn't a huge demand for it in relation to the cost of building the facility and red tape to manufacture a toxin in the 80's. She said we came very close to not having Botox for medical reasons and we should not be upset about all the publicity about cosmetic Botox. She did say we do need to write letters and email and call by the thousands everytime we saw a story about it on TV, paper, or radio and tell our story. The Botox rep speaks to my group Sunday.

Know I've missed a lot. More later. Tell me if I've missed anything earth shaking.




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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Apr 20,2002,07:46 Top of Thread Archive
I'm home, Delaine. Thanks for the report. Sounds like you did your usual great job of getting the message out and being `passionate' about it all. I don't think any of us are negative about Allergan/FDA approval for the cosmetic use of botox - we simply want medical usage mentioned along with the wrinkles! We realize that there will now be more botox available and we shouldn't run short for our own usage.

Keep up the good work friend.

June in Toronto(beb/meige)




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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Re: Yooh who! Anybody home? TN State meeting in east TN. --- June in Toronto
Posted by Delaine Inman , Apr 20,2002,14:38 Top of Thread Archive
Well I have been guilty of having concerns about demand going up faster than supply and appointments to get Botox especially from Ophthalmologist harder to get when needed. My neurologist has clinic days twice a week at the outpatient department at the hospital. When my eyes crashed after 5 months without Botox the clinic days were so booked they said there was no opening for 30 days. I emailed the doc and she got me in 2 days later. If you called her today for an appointment to see her in her office, she is booked until Sept. and that was before the FDA approval for cosmetic Botox. Mary Lou even mentioned it would be interesting to see who now wants to learn how to give Botox and since there was no real standard or place to learn, what would be the outcome of that? My Botox in March cost $1100 when the doctor and hospital charges were totaled. It will be interesting to see if that goes up or down. It has gone up for 3 years. I've been told the supply will go up and the price down, but only time will tell.



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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 20,2002,12:37 Top of Thread Archive
Good work, Delaine. missed your posts on the bb.



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Re: Your Tide box is waiting!

Re : Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by Sally - in - Idaho , Apr 20,2002,14:28 Top of Thread Archive
Hi, Delaine. Great to see you back here on the BB. The Tide box has been just setting there waiting for you to climb aboard and enlighten us about something new.

Sounds like you've been productively (and happily) busy.

Happy Spring!

Sally in greening up North Idaho




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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by Shirley-Arkansas-USA , Apr 21,2002,16:31 Top of Thread Archive
Hi Delaine, missed you. How did your support meeting go today? I still wish that I could come to your meetings.
I don't think that you have missed anything earth shattering.
New friends posting-board was moving along very quickly for a while and things have slowed down a bit now.
You need to come help me pick on Ann as she is feeling neglected and "unpicked" on.

Shirley in Arkansas wondering if Delaine has any dandelions in her yard?




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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Re: Yooh who! Anybody home? TN State meeting in east TN. --- Shirley-Arkansas-USA
Posted by Delaine Inman , Apr 21,2002,22:40 Top of Thread Archive
Very few Dandelions get by Rusty, so I have to enjoy the ones in the neighborhood. My flowers are looking good. My life has been so busy with trip to Texas and then to East TN and then company until Thur. Of course then the love of my life.....digging in the dirt, my daughter and granddaughter and Rusty and Dakota keep me going like the bunny with batteries. Mine do run down every afternoon and have to be re-charged. My house is full of dust bunnies and dog hair and my porch and deck are full of leaves and spider webs full of dead bugs. I don't know which is worse. I am overwhelmed and don't know where to start and I'd rather play in the flower beds. I need a Spring Cleaning Maid for a week....one that will do windows. The meeting with the Allergan Rep went well today. I learned a lot and want to believe everything he said. He was very nice and did a great job. Missed you. Right now I'm too tired to pick on Ann. Love you guys! BE GOOD and have a great Monday!



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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Re: Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by Evelyn , Apr 21,2002,22:58 Top of Thread Archive
Hi Delaine,
I'd be glad to come clean for a week, but I don't do windows:)...except on the inside. I've been spending a lot of time cleaning and doing laundry at my daughter's house. She has been having to work long hours at her job besides doing candle parties. When she gets time, she will finish her wallpapering job in their bedroom. Then the mess in the living room can be put away. I wish I were able to work in my yard. It's still awfully cold here for working outdoors...even if I could do it.
Evelyn, whose husband went to E. WA yesterday and hated to come back to this cold, rainy place.



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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Re: Yooh who! Anybody home? TN State meeting in east TN. --- Evelyn
Posted by Delaine Inman , Apr 22,2002,22:37 Top of Thread Archive
Well if you do the inside of the windows, I'll hose the outside off with windex for windows with the pressure washer. The house and fence and porch need the pressure washer anyway. It was 20 degrees cooler today than yesterday. I've held off on everything except periennials. I wait until around the 1st or 2nd week in May to do any annuals.



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Re: Yooh who! Anybody home? TN State meeting in east TN.

Re : Re: Yooh who! Anybody home? TN State meeting in east TN. --- Delaine Inman
Posted by Evelyn , Apr 22,2002,23:33 Top of Thread Archive
I'm afraid you'd freeze more than your hands if you tried to wash windows or plant flowers around here. The sun came out later this afternoon, but it was still cold.
Evelyn



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