life style


Posted by r coutant ® , Dec 01,2001,18:17   Archive
my doc reduced my 10/16 to 75 units. i'm scheduled
tuesday to have reinjections back at 100 units.
the 100 units lasted longer the time before.

this life style is so difficult. i'm glad i can
talk to you guys or lurk. there are several xmas
parties i've got to decide what to do with as i'm
bebing. of course i'm not driving.

hopefully i'll be "up" by 12/12 or so.

i hate living with this.

rhonda coutant




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Re: life style

Re : life style --- r coutant
Posted by June in Toronto ® (June Floyd,June in Toronto), Dec 01,2001,18:38 Top of Thread Archive
I know what you mean Rhonda (about living like this) - hang in there.

June in Toronto (beb/meige)




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Re: life style

Re : life style --- r coutant
Posted by Carol Brown ® , Dec 01,2001,18:42 Top of Thread Archive
Hi Rhonda

My name is Carol Brown. I just read your post and sounds as if you're having difficulties. I'm sorry to hear that. I have beb/meige and it is so hard to live with, especially when botox is beginning to wear off or something. My husband and I attended a memorial service for a dear friend of ours yesterday, and a retirement party last night. I found it difficult for me too, so I know what you are talking about. I have a large circle of friends who know about my condition and except it, but what's hard is when I am around strangers. I just figure most of us have problems of some kind or another so I try very hard not to let it bother me too much. Good luck to you on your Christmas parties. Just remember, it's whats inside that counts.

Carol in Naselle, WA where we are having a herrific rain and wind storm. Oh my! will it ever stop?




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Re: life style

Re : life style --- r coutant
Posted by Sally - in - Idaho ® , Dec 01,2001,21:28 Top of Thread Archive
Hi Rhonda,

I hear you loud and clear. BEB does require a few changes in the lifestyle of those of us who do not get full relief from Botox. It is probably easier for me to accept since I am older and more willing to be a stay-at-home. You are young enough to want to be in the mainstream of life and I hope that it works out that you have enough support from family and friends to do so.

Try to just take a deep breath and decide which social functions, etc., are the most important to you and then ask yourself if they are feasible for you to attend. If so, then go for it and don't worry about what others might think if your eyes aren't behaving.

Keep an open mind for new things to do that are more within your comfort zone. You could be surprised!

May you have a happy holiday season and not be forced into situations that are too stressful. Come to the BB and air your frustrations any time you wish!

Sally in North Idaho where the rain has melted all our snow and it's still drizzling and blowing.




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Re: life style

Re : Re: life style --- Sally - in - Idaho
Posted by kathy ® , Dec 02,2001,06:02 Top of Thread Archive
really good advice , sally.



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Re: life style

Re : Re: life style --- Sally - in - Idaho
Posted by Ann Doyle ® , Dec 02,2001,11:05 Top of Thread Archive
How old are you Sally to be content to be at home? I'm 71 and feel like I'm in prison when I can't drive or go to work. Seems like I need to change my attitude. I can drive and work 1/4 the time. Ann Doyle



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Re: life style/my age - for Ann

Re : Re: life style --- Ann Doyle
Posted by Sally - in - Idaho ® , Dec 04,2001,22:58 Top of Thread Archive
Hi Ann ... I'm 66. Don't get me wrong; there are lots of places I'd like to go and many activities I'd love to do, but they are not possible and I've adapated. We are in a rural area and in order to do anything in the entertainment line: plays, concerts, etc., it would require driving to Spokane or Coeur d'Alene, most often at night. I never attempt night driving and my husband cannot drive at night. So .....

There are times when I feel trapped and I resent the fact that I can no longer get in my car and drive unlimited distances. Just driving myself the 50 miles to Spokane (and then back again) taxes my strength and endurance and cannot be handled any more often than necessary.

I am thankful that I have regained (to some extent) the ability to read, as that has always been a major love of my life.

Sally in North Idaho where the roads are too hazardous to even think of going anywhere right now. Supposed to get more snow tonight.




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Re: life style

Re : life style --- r coutant
Posted by Joann Humphrey ® , Dec 01,2001,23:08 Top of Thread Archive
Sorry to hear you're having a bad time right now.
I'm surprised the Dr. agreed to give you botox so soon, just 7 weeks between injections. Good luck. Hope you're lots better by the holidays. I rec'd my last injections Oct 4 & am doing much better the the April & July injections. He did increase it in Oct & I suspect that's the reason. Appraxia is still a problem much of the time. I try to stay out of stressful situations; in other words I stay home most of the time. I don't drive, & shopping is difficult. I'm older too, 65, so rather enjoy home. I'm not a party person, but am planning to go to 4 this month.
Joann in Ark, where it's still quite nice, had a bright sunny day, which bothered, but I pulled the curtains when my husband was out.



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Re: life style

Re : life style --- r coutant
Posted by Rita Molnar ® , Dec 01,2001,23:11 Top of Thread Archive
Hi Rhonda..Nice to meet you !! Sounds like we both hate the same thing !!!!

I've got BEB and Meige, and if my eyes aren't closing, my mouth and cheeks are trying to do their own thing, so I know exactly what you mean. This sure is a rough thing to have to live with. For me, everything seems to depend on when my next shots are due and whether or not they'll work.

If only people understood it better...if only research could find a cure, or even understand the cause...if only I didn't bump into walls...if only my face didn't hurt, and I didn't feel so exhausted at the end of the day from fighting it....This, for sure, is the most frustrating thing I've ever had to face, and I hate it!

Wow...listen to me! I'm really not that bitter, usually. It's just that my shots are 3 weeks away, the eyes are starting to close, and I don't look forward to holiday prep without being able to see.

I do hope your Tuesday injections work well, and that you're up to attending those Christmas parties. Best wishes, and I'll be thinking about you !!




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Re: life style/rita

Re : Re: life style --- Rita Molnar
Posted by kathy ® , Dec 02,2001,06:09 Top of Thread Archive
well said rita. i live my life in 6 week increments between injections, At Least 2 of which are controlled by after side effects, weather and other factors which set me back. that's why it's important to praise yourself on the things that you do get done and remind yourself of this when you are down.



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Re: life style/rita

Re : Re: life style/rita --- kathy
Posted by Kelly Saffell ® , Dec 02,2001,10:16 Top of Thread Archive
I live my life in increments as well. I receive injections every 2 months but find that I only REALLY function for 3-4 weeks between waiting for the botox to kick in and it wearing off. I'm about at my peak right now 3 1/2 weeks post injections so I'm hustling to finish all my shopping before I can't do it anymore. It is a major lifestyle adjustment, especially with young kids but if I don't function within my limits my kids may not have a mom and I have learned that THAT IS WHAT LIFE IS ALL ABOUT! Rhonda, hang in there. It took me years to accept this horribly disabling disorder and I still cry every once in a while over my lack of independence and what I have had to give up but I try to focus on what I have gained. We try to keep our lives pretty low key and have alot of family time together (I'm sure that will get even harder once Cory starts school,sports,etc.), I have met alot of truly amazing people who have given me the strength to continue when I don't want to, and I have also had the opportunity to reach out to others who are hurting. There are alot of people in this world who go thru life nevery knowing that anyone truly cares about them and I am surrounded by love both at home and "on the net" and that is a blessing that I have to remind myself of daily.

Kelly in Dallas

--modified by Kelly Saffell at Sun, Dec 02, 2001, 13:13:21




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Re: life style/rita

Re : Re: life style/rita --- Kelly Saffell
Posted by Rita Molnar ® , Dec 02,2001,11:59 Top of Thread Archive
I like you, Kelly in Dallas....you're tough !



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Re: life style/rita

Re : Re: life style/rita --- kathy
Posted by Rita Molnar ® , Dec 02,2001,11:56 Top of Thread Archive
Thanks Kathy....sometimes I spend so much time feeling sorry for myself that I forget the good things I'm still able to do, and the many ways I've been blessed! 6 Week increments...and I complain about 3 months. You're a real trooper....



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Re: life style/rita

Re : Re: life style/rita --- Rita Molnar
Posted by kathy ® , Dec 03,2001,07:01 Top of Thread Archive
oh s...!. now i'm feeling sorry for myself. but it's true.



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