Blepharospasm Bulletin Board

Finally got newsletter
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Posted by: Delaine Inman in TN
04/04/2004, 08:28:37


Mary sent me a newsletter and got it yesterday. They only edited the part about Mary Lou telling me that her Mom's favorite saying was hope floats when I called to tell her I needed to stop volunteering and why. I wrote the article when I got off the phone. It was one of those things that came through me and not from me. I read it and went "did I write that?" That happens to me with many things I write.

Yes that picture is very old and before BEB. Had to grieve losing those big blue eyes, but friends and family keep telling me they don't look different...yeah right. Nice try, but my eyes aren't so bad I can't see the difference. They are better than they were the first few years of BEB. Go to the album and see more recent pictures. I sent Shirley a picture of my place maybe she can fit it into album. I had the wrong email address and wondered why my little sis wasn't emailing me. Got one from her and now I have the correct one for her. Yeah!! Love my little sis and been missing her.




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Re: Delaine's home in the photo album
Re: Finally got newsletter -- Delaine Inman in TN Top of thread Archive
Posted by: Shirley Barr in New Mexico
04/04/2004, 15:20:16


Hey Big Sis!
I got your pictures and have put them in the "Flowers, Gardens and Homes" album in the bb photo albums.
Looks like you've got your very own waterfall there on the river. And such beautiful big trees. Lots of windows and a great deck on the back facing the river. Looks like a place where you can spend some time relaxing and enjoying nature. My kind of place. Folks, when you go to look at the two pictures that Delaine sent me, if you use the "full screen" option that is located to the right and bottom of the photo, you will be able to see things a little better.

For those of you that are fairly new to the bulletin board, Delaine and I are not actually sisters...we have just sort of dubbed each other that as we both developed BEB at about the same time and found the bb at about the same time, have very similar symptoms, are both RNs and are about the same age...she is just older than me. We met about 4 years ago at the Kentucky conference and both have a slightly warped sense of humor. :-) We've had many good belly laughs together.

Thanks for sending the pictures for us, Delaine.

Shirley in New Mexico who has a big ditch (arroyo) in her backyard but it doesn't have any water in it.




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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Cynthia
04/04/2004, 21:20:03


What a lovely place, Delaine, though I'm sure it wasn't easy leaving your beautiful garden. Your new place on the river with it's own waterfull has its own natural garden! Shirley, your place in NM has its own natural beauty too, even though you don't have the water that your big sister has.
THANK YOU both for sharing,
Cynthia in IL



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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Kathleen
04/05/2004, 08:44:56


Shirley and Delaine, I am also a RN - makes me wonder if our choice of profession has something to do with the beb. haha. I actually left the healthcare field in June 2003, but will work enough (eyes permitting) to maintain an active license. Kathleen



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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Kathleen Top of thread Archive
Posted by: Delaine Inman in TN
04/06/2004, 08:39:33


Any type of profession or lifestyle that keeps those stress hormones flowing on a chronic level is hard on the body and weakens the immune system and all organs. This is the 5th year I haven't been able to work, so when my license comes up for renewal I will have to put them on inactive status in July. HAAAAAARRRRRRRRRRRRDDDDDDDD hurdle to admit as a reality. I have lost one certification and will lose the second at the end of the year. So this has been an emotional crossroad. To no longer have this as part of my identity when it has been for since a nursing aide in 1967 and an RN since 1972. I kept my CEU's up and BCLS which was expensive and the Holistic certification would consider my work with the BEBRF holistic nursing, but the TN State Boards won't recognize that and my disability too. The fact my husband resented the BEBRF Volunteering and I gave it up was tough. Finally decided it might be healthier to give him up. That was only a piece of the puzzle that ended the marriage but lack of support and affection wears you down when you are trying to cope with something like dystonia of any form. Glad you can work some. I just can't.



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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Delaine Inman in TN Top of thread Archive
Posted by: Kathleen
04/06/2004, 10:10:58


I'm sorry you had to relinquish your certifications and now your license. You're right - those are such a part of our identity that it is like giving up another part of our body and / or soul. It is hard to understand your husband's behavior, but I'm glad that you were able to make the decision that will probably be healthier for you in the long run. Do you have other family and friend supporters available who may be a little more understanding about how hard this condition is to live with and how important it is to us to continue to do work that brings value to our lives?



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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Kathleen Top of thread Archive
Posted by: Delaine Inman in TN
04/07/2004, 10:15:41


Yes the rest of my family and friends are very supportive. I am so much happier now in my situation. My eyes are doing better now that some of the stress is gone. As long as I rest often and pace myself and take meds I am functioning better. It is just still so unpredictable that makes it frustrating. My fibromyalgia is a double whammy to have to cope with along with BEB. It takes a lot of time and energy to make it look easier than it is.



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Re: Delaine's home in the photo album
Re: Re: Delaine's home in the photo album -- Delaine Inman in TN Top of thread Archive
Posted by: Kathleen
04/07/2004, 11:44:13


I'm glad to hear that your family is there for you and that you are doing better. Fibromyalgia I think is just as frustrating a disease / disorder as the BEB, so I feel for you having to deal with both. I have tested positive for Lupus for many years, but have never had symptoms, so am very lucky. We have a strong family history of autoimmune disorders, none of which fit the "textbook" picture.



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