Posted by: June in Toronto ®
07/28/2003, 11:12:05
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Hi Essie, we sure hope that your first neuro appointment helps you, but nobody can promise that he/she will give you botox injections straight away, or if they will help you sufficiently (at first) to drive better. Some people get great results from their botox injections, but for most people it takes many months of trial and error to get the right amount of units and injection sites to work the best. I'm sorry about your car accident. As its been pointed out before on this bb though - we must remember that if it is found out that we have this eyelid disease/disorder it might cost us a lot with the insurance company, even if the accident isn't our fault. I believe, in a lot of places its the doctor's duty to inform the driving authorities that we have this problem. Sorry to have to tell you this, as I know how driving gives us our independence and in your case your job, but its a fact. I hope your first neuro appointment goes really well for you.June in Toronto
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Posted by: essie ®
07/29/2003, 00:18:00
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Hi June
I love looking around the page because everyone is experiencing the same thing and you have been very kind to me. But I hate that their is no magic pill. I just want this thing to go away!! Its spoiling EVERY aspect of my life and I cant come to terms with the fact that I may always have to live with it. Drinking a bit more than I use to, but bleph and hangovers DO NOT mix (anyone else found its worse next morning after a few too many?). I am feeling sorry for myself, I am angry,sad,confused and very very frightened. I need to come to terms with this (people get cancer and cope!!, why am I taking this so badly??) Its just "spoiling" everything, I feel like a disabled person, but I am very fit and relativly young. I want to fight this!!..but have now started to "bump into things". I am as good as blind for a lot of the day, I dont want to miss my life with my eyes closed. I will lose my job, how will I take my kids to their sport stuff?. I am slowley but surely dropping out of society. Having this is going to change everything and I am not coping
cheers essie (in tears)
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Posted by: rita ®
07/29/2003, 00:41:35
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HI Essie
I am so sorry you are feeling so bad right now..It is indeed a very scary thing to have happen to oneself.
I hope you get botox and get some relief from it all..
Everyone is different in the way they respond to botox...I hope you have a good doctor..
Do you have a husband that can help you?
Your driving is indeed sounding very dangerous, but you have to make the decision to quit driving by yourself...and it is a hard one to give up your independence...I don't drink ,so couldn't help you out there ,only know that alcohol and drugs don't mix..so be careful..
Take care of yourself..and yes June is a very kind and caring person..Rita in Washington State
Modified by rita at Tue, Jul 29, 2003, 00:42:15
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Posted by: June in Toronto ®
07/29/2003, 11:17:46
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We all know, Essie, how hard it is to come to terms with any disability - especially this one that is not understood, by some doctors as well as friends and family (they just don't walk in our shoes). IT WON'T GO AWAY - at least not now, maybe a remission (a miracle) will happen, we can but pray. So your first step is to realise that with the PROPER dosage of botox and the CORRECT injection sites you may cope a lot better, but this will take time to achieve. Also you need to stop stress as much as possible, slow down if possible and maybe the drinking is adding to the negative side of all this! Can you take a leave from work or short-term disability or at least a vacation? Hang in there for your children's sake and be as good to yourself as possible under these difficult circumstances. My prayers are with you.June in Toronto
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Posted by: Mary, upstateNY ®
07/29/2003, 13:33:53
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essie - sorry to hear that you're having such a hard time. It's happened to all of us, and this bulletin board is the place to find understanding! One of the many doctors that I saw before I was diagnosed prescribed Valium, which I was a little leery about, although I took it for a while. But finally Klonapin (Clonazapam-generic) was the right one for me. It was originally for anxiety, but turned out to be the "weapon of choice" for BEB. I also receive Botox shots every 8 weeks, and had a partial myectomy. I think BEB is partly caused, and definitely worsened by anxiety and stress, and the Klonopin helps with that, while helping to keep the spasms less troublesome. Because of the meds, I stay away from alcohol. But I do confess that I occasionally sip a glass of chablis, with ice! Just to be sociable, don't-cha-know? Hope you can pull yourself out of the "slump" soon. We've all been (or stil are)there! Mary
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