Re: go with the flow
I am glad you are doing better. You may be one of the "lucky" ones who continues to respond well to botox. Driving is hard whether botox works or not unfortunately. I am only 32 and had to quit my job as a CPA almost 2 years ago. It was a very hard decision to make. My daughters are still very young and keep me very busy at home however. Losing my independence is frightening. I sometimes wonder what would happen to me and the kids if something happened to my husband. I would have to move close to family because I am only able to drive short distances and I would have to have help raising the girls. I have faith that God will provide and I just can't let myself worry about it. What I have found helpful is to redirect my energy into helping others and trying to "spread the word" so to speak. I was interviewed by Ladies Home Journal about botox and was on a local fox news health report explaining dystonia and botox. The beb support group in my area is virtually nonexistent so I went to my first dystonia support group meeting on Sat. and found I had alot to contribute. I have had someone that I met at the meeting with beb contact me via email asking for advice on treatments, doctors, etc. I had another recently diagnosed man from my area read one of my posts and contact me with questions/suggestions. I am limited in what I can do with a 3 and 6 year old but I am feeling very "called" to become more involved in patient support and public awareness. Sometimes when one door closes God opens another.Kelly in Dallas
Re: go with the flow
Kelly, it's weird but I really feel connected to you.
I'm a CPA also. I only work part time currently. I'm
42, and I have 2 sons. Greg is a 9th grader, & Blaine is
a 6th grader.We're very involved in sports/scouts/social stuff with the kids.
My husband was great this summer, but I almost couldn't take
it. I carpool, you name it. I don't want to have to give
up my lifestyle. I read & reread everyone's posts and find reassurance that everyone
is putting one step in front of the other and going on. The disease is so awful I think. I couldn't even prepare a meal
this summer for fighting with my eyelids.
Thank you for listening. P.S. I'll learn how to post this stuff
correctly eventually.
Re: go with the flow
Hi ... I'm sorry, but at the moment I can't recall your name.Cooking can be a real interesting adventure. Sometime ago we had a woman post a picture of a beautiful blue roast she had created when she accidentally dropped a bottle of blue food coloring into her slow cooker. We shared a laugh with her and went on. Try to keep your recipes simple and stick with the old familiar things on bad days. A lot of people go out to eat or purchase convenience foods. My husband refuses to go out and frowns upon convenience, expensive stuff, so I am relegated to the kitchen. When I make something that requires considerable time to create, I usually make a double batch so I have the extra on hand for emergency use. I always double cookie recipes because once I'm in the mess, it is just as easy to keep on truckin' and create a whole stack. I'll admit, by the end of the session I am very tired and often do not clean up the mess until the next day, but it's a good feeling to have them on hand. It sounds like you are doing fine and trying to adjust. Just don't push yourself too hard to be your old hyper self. Slowing down a bit might bring more special moments into your life. Sally in North Idaho who found this morning's prayer service so beautiful and uplifting. Let us go forward in overcoming this act of "terrorism" and not be so quick to call it an act of "war."
Re: go with the flow
It's not weird-we all need to establish connections and they are important. I live in the Dallas metroplex, where do you live? We are just beginning the parental road of extracurricular activities! My 6 year old plays soccer (hubby is head coach) and takes karate. My 3 year old goes to preschool 2 days a week. She can't wait to take karate when she turns 4 (or "hi ya" as she calls it which should be a sight!) We swam alot all summer and the sunlight and heat killed my eyes but I did it anyway and payed the price in the evenings. I don't want my kids to miss out because mom is sick. I have begun yoga several times a week (just a 20 min video) and I listen to relaxation music with headphones as well. Both help me relax and unwind. My email address is ksaffell@aol.com if you want to "talk".Kelly
Doing it - however you can ...
It's not an easy thing to do ... simple to say, most difficult to do.I think that many (if not most) of us did the 8 hours + at least 5 days a week for pay as a way of survival. We understand. Standing beside you (not behind or in front of). Judy --modified by Moderator-JB at Fri, Sep 14, 2001, 15:23:38
Re: Doing it - however you can ...
Thank you for responding Sally & Judy. While I am extremely
self-centered in this forum I can't tell you how much my
family benefits by this disease being contained by the Botox.
That is why I'm so terrified about the high risk that things
will go downhill.After work I picked up my 6th grader from school today,
ran carpool with the 9th grader, went to a pep rally,
went to a football game, and ran my 9th grader to an
after football gathering at a local church. Someone else
will bring him home at midnight. The 9th grader has to
be at baseball at 9a.m. tomorrow morning & has a double-
header to play. My husband & 6th grader left town until Sunday for a boy
scout activity. This is normal for us, & I love it. I love Judy telling me she's standing beside me because
that is what I need now. If things change for the worse
I've got to "lighten up" as it seems most of you already have. Thank you everyone. I'll just "listen" to you guys for a
while now & prepare myself to be adaptable. Thank you all. Rhonda Coutant
Re: Doing it - however you can ...
Hi Rhonda,Let's see if we can get BEB to cooperate and work around your schedule.
First try to understand BEB has 2 enemies, being tired and being stressed. If you work against the Botox, it can't give you the full effect.
So, if your busy schedule starts after school, you're gonna have to
set aside a rest time for "you" earlier in the day.
At the end of your day, before you fall asleep, be aware of your body.
Make sure everything from your head especially your mind to your toes are completely relaxed.
Good Luck Rhonda, I'm rooting for you :-)
Mindy in NY
Re: Doing it - however you can ...
Dear Rhonda,I am right there beside you too, along with Judy and the rest of the great folks on this BB. I had to give up a private therapy practice when I was diagnosed with medication induced Tardive Dystonia, including the blephs. I also couldn't drive for 3 years. Since then I have had DBS Implant surgery and I get botox shots. NOw I have just opened a new therapy practice here in Oregon and hope I get some clients soon! BUt like you, I see my role now as educator and I try to spread the word about dystonia and do every thing I can for public awareness. I contacted my local newspaper and they did an article on me and they just did another one about my business. Maybe this is your body's way of telling you to slow down? I have new hobbies, and new friends, and am now able to ASK FOR WHAT I NEED. I was never able to ask for help - now I don't hesitate and I am pleasantly surprised at the positive responses I get. People love to help people and I give them that chance! So stick with us here on the BB and together we will make it and we will make a difference in someone else's life. Glad you are here. Dee in OR
Re: Doing it - however you can ...
Would you mind emailing me what drug you suspect did the BEB?I have my ideas about something I've been on for years also. rcoutant@hmcco.com thank you. rhonda
Re:Drugs that can cause...
I had been on Elavil for 7 or 8 years for Fibromyalgia. I had chronic stress and a first cousin with vocal dystonia and 2 Aunts with Parkinsons disease, I was exposed to may toxins on the farm growing up as a child and a blow to my face that fractured my nose and left the tip of my nose numb for years....the possibilities that may have contributed go on and on. The Dystonia board has a list of drugs that may cause dystonia if taken for long periods of time and we know some people get what Dee has (TD)from certain drugs if taken for very short periods of time.
Re: Good place to display literature
Hi Dee,Your new office will be an ideal place to display literature re/BEB and dystonia. Be sure to frame the article about you that was in the paper and have it on display also. Sally
Re: Good place to display literature
You bet your sweet blephs Sally!! I will have literature and lectures ready for anyone who walks in my door!Dee in OR
Re: Doing it - however you can ...
Please think positive. If the Botox is working well, it may continue to do so. Don't dwell or anticipiate what might or could happen, because truth is....it may never happen. 80 to 95% of what we worry about never does. When it does happen...we handle it....you will handle it. I have met people who have had BEB for 20 to 30 years and they haven't progressed as some do and I've met some who have had it a few years and progressed to Meige quickly, but they somehow find the courage to handle it and find joy at every opportunity. So imagine, believe, hope, pray that you will be one of those that it will not progress or that Botox stops working as well. Stress makes it worse and fear is the highest form of the stress response. It is hard not to worry and fear pops up its ugly head often, but when I catch myself feeling fearful, I try to recognize it as soon as possible and tell myself to STOP and reassure myself with a more positive thought like taking an antidote for poison. Fear is poison and love, hope, faith, talking to someone, coming to BB for reassurance ...all those are antidotes that help me. When I first got this I thought there had to be some mistake, I looked better, felt healthier, was happier, and was more satisfied with my work than I had been in my whole life. Then the second thing I thought was that I was going to find a cure and that was the purpose behind me getting BEB. Then I pleaded with God to take it away and finally I prayed that I would find meaning and purpose in the loss of my job and so much of my independence that defined who I was. I had just finished my Masters degree one year before this happened and I was getting my second certification by the American Nurses Association Certification. It made no sense. I had been going to school and working all my life. Finally I received clear guidance about a few things....I re-read some of my journals and I saw how many times I had written I wished I had more time to do certain things. So I began to enjoy the fact that I did have more time now (not under the circumstances I imagined). I also felt lead to start a support group in TN because I knew I had the skills and personality to do it( I thanked God for using me and I have been rewareded a hundred fold for my efforts). I said surely there is more I can do ...something Big I thought...and a voice from within spoke to me over and over and said, "Maybe I just want you to plant flowers." Surely not I thought, but I began to dig in the dirt, haul dirt and mulch and plant flowers. We have been here in this house 2 years and the before and now pictures are amazing when I look at them. People tell me all the time how beautiful my yard is and how much pleasure it has brought to them. When I dig and plant, I feel almost normal and the joy the fruits of my labor has brought to me and others just blows me away sometimes and the beauty of it moves me to tears. 3 years ago if you had told me this would be what I am doing, I would have said, never, not me staying home and living this life I now live. Sometimes it is very tough, but once I surrended my old life, grieved its loss and moved forward, I began to be at peace despite the times my eyes shut down. We just never know the blessings we can find in difficult times and I have to admit I have found many blessings and opportunities to be with friends and family(really present and there for them much more than when I worked full time). I was forced to slow down and plant and smell the roses. I also believe the message to plant flowers had a symbolic/metaphysical message for me. Every time I provide encouragement(with words of my experience or humor) to anyone I am planting seeds of love. Sorry, didn't mean for this to be a novel.
Re: Doing it - however you can ...
I like novels with happy endings.Sally
Re: Doing it - however you can ...
Me too! Thanks.Dee in OR where it has been hot & MUGGY for days!
Re: Doing it - however you can ...
thank you Delaine and everyone else for letting me see your
coping mechanisms/perspectives with life with this disease.rhonda
Re: go with the flow
Boy, do I relate. I'm preety new to this and absolutely freaked out about the possibility of giving up my active lifestyle. I live alone (which I have always loved) and have a busy psychotherapy practice. I can't even go to the grocery store right now and barely make it the one mile to my office. I'm still not sure I can accept it. I keep telling myself that I'll give it a year, and if I'm the same I'm afraid of where I'll be mentally. I'm still trying to find the right doctors, doses, etc. I just started Artane and that scares the hell out of me. Today, I've only been up for a couple of hours and my face is killing me. Just trying to hang in there . .. . JoAnna
Re: go with the flow
Joanna,Just hold on; we're here to support you and walk beside you whatever comes. I know it can panic one wondering what is to come, but try to stay as calm as possible and do whatever you can do comfortably. Maybe your psychotherapy practice will be a place where you can "spread the word" of this affliction and create more awareness just through people seeing and meeting with you, knowing what you are going through. Feel free to come here with any problems, gripes, or victories! Sally in North Idaho where it's still hot tonight.
Re: go with the flow
hi joanna,thank you for responding to my post. i am not exactly in your shoes,
(i live with my husband & 2 sons & am a CPA working only part time),
but i hear you when you explain how difficult your life is now. i'm sorry. rhonda
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