Re: Need to let off steam
Hi Dianne ... Movement quite often bothers me. Not so much driving myself, but sometimes riding as a passenger makes me woozy. Walking is bad, especially in big, open spaces. I tend to get disoriented and off balance ... partly, I suppose, because my eyes are opening and closing and going through constant adjustment. I can't watch much TV, unless the scenes are quite steady and still; jumping around and flashing is bad.Hope you feel happier tomorrow. Sally in North Idaho where it was a beautiful spring day today.
Re: Need to let off steam
My own movement bothers me. I have fallen down twice in the past 4 weeks. I also bump into walls alot. I look like I' married to a wife better. My balance is very poor.
Ann Doyle
Re: Need to let off steam
That's exactly what happened to me when I took any kind of drugs. I bumped into everything, it was pretty bad. Once I pusthed over a whole corner of groceries. So now I don't touch drugs anymore. Have to manage without them.Take care, okay. Gisela
Re: Need to let off steam
Dear Dianne,I am sure we all know how you feel and have similar days on and off.
There are days when coping with this disorder doesn't leave me with much energy either, and housework is the last thing on my mind.
I think what we all need from time to time is a little chuckle. Here is one for you: 'Just Three Words A woman was sitting at a bar enjoying an after-work cocktail with her girlfriends when an exceptionally tall, handsome, extremely sexy young man entered. He was so striking that the woman could not take her eyes off him.
The young man noticed her overly attentive stare and walked directly toward her. Before she could offer her apologies for so rudely staring, he leaned over and whispered to her, "I'll do anything, absolutely anything, that you want me to do, no matter how kinky, for $20---on one condition."
Flabbergasted, the woman asked what the condition was.
The young man replied, "You have to tell me what you want me to do in just three words."
The woman considered his proposition for a moment, then slowly removed from her purse a $20 bill, which she pressed into the young man's hand along with her ddress. She looked deeply into his eyes, and slowly,meaningfully said......
"Clean my house."' We should be so lucky to meet a fellow like that, right... Talk of wishful thinking. Gisela in B.C. - who hopes you will feel much better soon !!
Re: Need to let off steam/Gisela
Oh Gisela! That one was good.
Re: Need to let off steam
I've heard that one before, Gisela, but it still makes me laugh. thanks.June in Toronto where it is snowing!
Re: Need to let off steam/Dianne
Things that move very fast also bother my eyes and can sometimes set off spasms in me.
--modified by Kathy in Atlanta at Fri, Apr 05, 2002, 06:27:23
Re: Need to let off steam
Go ahead Dianne - let off steam - we can take it and we even care! I hope this new doctor helps you and you get some relief. Give the botox injections more time - mine take 4 weeks and more sometimes before they help. Lots of things irritate me - people being around me in a crowd especially. I can only deal with one thing at a time - but perhaps this has to do with aging for me as well! This disease just gets aggrevated by so many things and then, when you get some other illness on top of it, it seems impossible to cope sometimes. But we do and we will - Gisela's joke helped, we need to laugh more and, hey, LET THE HOUSEWORK GO, it'll be there tomorrow (easier said than done I know). Take care.June in Toronto (beb/meige)
Re: Need to let off steam
Diane, I live in NC and Dr. Dutton in Cary is my doctor. He has excellant credentials - he studied and assisted Dr. Richard Anderson (Salt Lake City)in over 200 surgeries and has performed that many in private practice. He is a good and caring person. He first tried the Myobloc on me but it did not help, it had a lot of side effects for me - double vision for over two weeks. BUT everyone responds differently and it might help you. He performed a second limited myctomy on me August 1, 2001 which did not help me because of so much scar tissue from the first surgery (performed by another doctor). We are having a State meeting this Saturday, April 6th at Dr. Duttons office. I am not sure I will be able to go but I can give you directions to his office if you want to go. I think I remember she said you worked at a school. How old are you? How long has it been since you were diagnosed with the BEB. It took me almost over 1 and 1/2 yr to find a doctor who could even tell me what I had. I thought, it has a name so there must be a cure or at least a treatment. Wrong - no cure and the treatments of Botox don't always want to work like we want it to. I too, am tired of this mess but I have been struggling for the last 3 years to get the right combination of Botox and meds and so far none of these treatments have helped me like I would want them too. I try to take one day at a time and do what I am able to do. I had to retire from work approx 2 two years ago because I could no longer drive. I only lived 1 mile from my work and I did enjoy it so much. That is the part I hate most, the loss of my independance. I have to rely on husband, family and friends to take me where I need to go and sometimes it is not always convenient for them, so I have to wait till it is. Just hang in there, and take each day as it comes. That will eliminate a lot of stress in your life. Joyce in NC - I live in the central part of the state and today is beautiful - sunny and cool.
Re: Need to let off steam
Hi Joyce'
Thanks for the info. I do work at a school with primary age children. I'm 45 years old. My work is 10 miles away. I can't drive since January and it is so aggravating trying to find someone to take you everywhere.
I was diagnosed in January. Novemner was when the symptoms starting appearing that I noticed. My first doctor said I had a severe case. It has really brought me down. I've always been very independent and active. Now I can't do much of anything without someone with me to keep me from running into trees or ditches. Right now my patience is low. My dad has Alzheimers and depends on me for alot. Always stress wherever I turn. Oh well! Have to go now.Thanks,
Dianne Beavers , Southeastern NC
Re: Need to let off steam
Hi Joyce,
I too was diagnosed in January and I am feeling the exact same way. I am 43 years old and I work for a outdoor/ski wear company 40km outside of the city I live in so, finding transportation to work is really a challenge. I have only had my second set of injections and they seem to begin taking effect in only 4 days after receiving them however, within a week my eyes are begining to close again and I get down by the whole thing. I have a 13 year old daughter who is at that great age....and my father who too depends on me since we live so close to each other. One of the problems is, he has never drove so, I have always been his means of transportion. I do have an older sister, who just doesn't understand what have or what I am dealing with at all and 2 younger brothers that some what get it. The stress is something I am going to need to take more notice of but at time it is extremely hard.I hear you!
Debbie Campbell, London Ontario
Re: Need to let off steam
Hi Debbie, I've welcomed you under another post - but I see from this one that you have answered some of my questions. As you work in an outdoor/ski wear store, you might have some suggestions about sunglasses for me to wear (that I can buy in Canada) to help prevent the cold wind and/or the sun which, a you know, is awful for beb sufferers. At the present time I wear Solar Shield wrap-around sunglasses and I have a pair of glacier glasses with leather sides which help with the cold wind. Any other suggestions? I would go into ski goggles but they are HUGE and I have just a little bit of vanity left in me:-) I found a pair of cheaper, small goggles but, even with anti-fog, they fogged up in a minute and were useless.Its hard for others to understand our plight - we don't always understand it ourselves! Keep trying and good luck. June in Toronto (beb/meige)
--modified by June in Toronto at Sun, Apr 07, 2002, 08:09:10
Re: Need to let off steam
Hi June,
Thanks for the welcome! I have been up most of the night just reading all of the posting hoping to gain some knowledge and I found some very interesting and usefull information. I am so glad to finally find people who understand what I am feeling and living with.
The glasses that I wear work very well however did not get through work. They are just a regular sun glass but wrap around around the eyes to completely cover them so now winds gets through. They are quite dark so they also work well with blocking the bright sun. The only challenger is if I venture out at night because they are quite dark. If you would like the brand name, you can email me.
Thanks again for your kind words.
Debbie
cmpdeb@netscape.net
Re: Glasses
Hi Debbie, yes I will e-mail for your brand of sun glasses - thanks. As I mentioned I use the Solar Shields and they are reasonably good - and I guess they can't be completely wrap-arounds as they, too, would fog up right? A night I use safety glasses - I bought them in Canadian Tire for around $9. I don't have to wear reading glasses all the time, so these safety glasses work ok for me (they wouldn't cover other glasses I think). At least they don't make the darkness any darker and they do keep out some of the wind which is a problem for most of us beb'ers. I also bought (at Canadian Tire) a 2nd visor for the car which is amber coloured - it helps with on-coming traffic lights at night (I can't drive at night but helps as a passenger) and it uses elastic to slip it over the existing visor - you might try looking for it if this is a problem for you. Take careJune in Toronto (beb/meige)
Re: Need to let off steam
Dianne, sounds similar to my situation other than the spasms while talking a lot. Now if I'm driving, then it’s a different story. It’s all I can do to get to and from work. Breathing normally and talking in the car are history. My BTX, if it works, takes about 2 weeks to fully kick in. I know how you feel, sometimes I curse and yell in the car because it’s so frustrating. Hang in there. Ken in DFW
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