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Posted by: Moderator-JB ® 10/29/2003, 14:39:31 Author Profile Mail author |
Friendship with those who know what/why/how and whatever, about BEB/Dystonia is absolutely priceless. When we are feeling down and get an e-mail from someone on this BB ~ it makes us smile. When we are feeling good and get an e-mail from someone on this BB ~ it feels great. When we send an e-mail to someone on this BB, it sheds sunshine on their day and brings us out of our shell. You never know just when that few words from you might make someone's day. Send it, Judy |
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Re: Friends ... Re: Friends ... -- Moderator-JB Top of Thread Archive
Posted by: Lyn Down Under ®
10/29/2003, 17:03:52
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Yes, I do so agree. There are only a very few of my "other " friends who know I have BEB - most people have never heard of it and when one tries to explain, I can see their eyes glaze over as they cannot really grasp the concept of not being able to see although there is nothing major wrong with one's sight. So it is great to be able to discuss things with people who know immediately what you are talking about.
Lyn
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Re: Friends ... Re: Re: Friends ... -- Lyn Down Under Top of Thread Archive
Posted by: Ann Doyle ®
10/29/2003, 18:14:14
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I've had some infections the past 3 weeks and have felt lousy but today everything is fine and I am so glad I had a myectomy. Of Course I was in pretty bad shape before the myectomy and the Botox only lasted 5 to 6 weeks. So far it has been 24 weeks and I can really see. Before, one eye was completely closed and I had to hold the other one open. I read that on my GP doctors report today. Don't have to see any more doctors until Dec. 19 when I get Botox. I hope I last that long. I have to sign up six months in advance for my Botox DR. He is really good. He has stopped taking anymore Botox patients. When I started 3 years ago, I just had to make them three months in advance.
I still have Meige and that can be a nuisance.
I don't need nearly as much meds. Which is good because Jan first we loose our insurance and have to pay for them ourseoves. My husban uses a lot too. We are looking to Canada. We can't get all of them and you have to get three months at a time but it is a big savings. Not only that, I feel so much better without the drugs.
Didn't mean to rattle on so much.
Love the board which is the people who write on it. Ann Doyle
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Re: Friends ... Re: Re: Friends ... -- Ann Doyle Top of Thread Archive
Posted by: Gayle Register ®
10/30/2003, 07:18:01
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Question: You had myectomy. Why do you still Botox injections? I also am looking to Canada but so far my drugs are "not available". I also have Meige. Sorry to here about your insurance. You are in my thoughts and prayers.Gayle in GA
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Re: Friends ... Re: Re: Friends ... -- Lyn Down Under Top of Thread Archive
Posted by: Ann Doyle ®
10/29/2003, 18:15:02
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I've had some infections the past 3 weeks and have felt lousy but today everything is fine and I am so glad I had a myectomy. Of Course I was in pretty bad shape before the myectomy and the Botox only lasted 5 to 6 weeks. So far it has been 24 weeks and I can really see. Before, one eye was completely closed and I had to hold the other one open. I read that on my GP doctors report today. Don't have to see any more doctors until Dec. 19 when I get Botox. I hope I last that long. I have to sign up six months in advance for my Botox DR. He is really good. He has stopped taking anymore Botox patients. When I started 3 years ago, I just had to make them three months in advance.
I still have Meige and that can be a nuisance.
I don't need nearly as much meds. Which is good because Jan first we loose our insurance and have to pay for them ourseoves. My husban uses a lot too. We are looking to Canada. We can't get all of them and you have to get three months at a time but it is a big savings. Not only that, I feel so much better without the drugs.
Didn't mean to rattle on so much.
Love the board which is the people who write on it. Ann Doyle
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for Ann Doyle Re: Re: Friends ... -- Ann Doyle Top of Thread Archive
Posted by: Teach ®
10/29/2003, 22:17:48
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Sounds like you've been through a LOT. I'm so sorry. And to lose your insurance on top of it all! My punctal plugs and Botox were both covered by my health insurance. I would have never been able to afford them otherwise.Sounds like the myectomy was a good decision for you. I haven't gotten to that point YET, but, well, we'll see (so to speak!)
I'm going to go put some ointment in my eyes and go to sleep--I can feel them drying out in spite of the plugs.
Good night! Oh, and good luck!
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Re: Friends ... Re: Friends ... -- Moderator-JB Top of Thread Archive
Posted by: June in Toronto ®
10/30/2003, 08:07:39
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June in Toronto who is so glad to hear that Ann has had some relief from her myectomy operation. Good luck with getting the drugs from Canada - I'm glad we are good for something:-)
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Re: Friends ... Re: Re: Friends ... -- June in Toronto Top of Thread Archive
Posted by: Ann Doyle ®
10/30/2003, 18:19:04
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Also I have not had Botox since my myectomy. I just heard that most people still need it but not as often. The bad part is that I have to make appointments with my Dr. six months in advance. He has stopped taking anymore Botox patients. I will still need him for my Meige. I get them in the jaw and throat. My next appointment is in Dec. It sure has helped my eyes but I find I need drops a lot, even with plugs and ointment at night which is a small price to pay for sight.
Back to work tomorow after two weeks off. All the antibiotics reduced the good bacteria and I had several infections that have finally cleared up. No more DRS till the end of Dec. Yeah! Ann Doyle
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Re: Friends ... Re: Friends ... -- Moderator-JB Top of Thread Archive
Posted by: Kathy in Atlanta ®
11/02/2003, 01:41:47
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