bad dream


Posted by r coutant , Oct 19,2001,09:44   Archive
I'm sitting here this morning thinking the last couple
of years have been like a bad dream, & it can't all
be happening. After getting credibility with docors
that I had BEB, (I wouldn't always spasm in front of
them) I tried the BOTOX for over a year with no response.
(The doctors I used would only administer a low dosage).

This summer when my eyes clamped shut I was referred
to another doctor, who with experimention gave me 100
units which were successful. After two months & I week
the spasms returned very randomly. The doctor readmin.
the medicine but was skeptical that I need them then.
He made the comment that he thinks "something else is
going on here". (I've been an emotional wreck & take
meds that he is inferring are contributing to the prob.)
This is the hardest thing I've ever been through in my
life.

rhonda




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Sorry for being down today

Re : bad dream --- r coutant
Posted by r coutant , Oct 19,2001,16:46 Top of Thread Archive
I'm sorry everyone for my earlier downer post.

I'm a wife, mom, daughter, & CPA, & I'm very
involved with my kids' lives in the community.

When my doctor implied I was wanting my BOTOX
too soon it really hurt me. It really hurt me
that my report of returning spasms at a bit over
2 months was hard for the doctor to believe.
I believe he has patients who go as long a 6 months.

Again, I'm sorry to everyone for crying around.
I've always been somewhat successful, & again it
hurts when people treat me as if the BEB is my
problem.

rhonda




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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by June in Toronto (June Floyd,June in Toronto), Oct 19,2001,17:07 Top of Thread Archive
Don't worry about crying on our shoulders Rhonda, we've all been there, done that - that's what is so nice about this bb, we understand. Don't allow the doctor to hurt you by implying you wanted the botox injections too soon (I know its easier said than done). You are the one to decide when you need them - you should try and find a doctor who understands that. Most of us don't spasm when we are in the doctor's office - its a strange thing! Keep you chin up, I hope there are better days ahead of you.

June in Toronto




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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Billie Lowe , Oct 19,2001,17:20 Top of Thread Archive
Rhonda, don't be sorry for being down. We all get that way sometimes. That's what's so great about the bb. You can cry if you want to. That's a song you know. It's My Party & I'll Cry If I Want Too. Most people that don't have BEB have a problem understanding. My husband & daughters are pretty understanding, but my sisters (which I don't see often) don't seem to understand, nor act like they want too. It does hurt when your doctor makes you feel like there is something you can do about it, like straighten up or something. Hang in there.

Billie in Kansas where we are having beautiful fall weather.





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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Dee in OR , Oct 19,2001,20:32 Top of Thread Archive
Rhonda,

Don't take any crap from your doctor. Find a new one if you have to. The BEBRF can give you a referral list. This is the place to come when you want to whine or if you're feeling down. We have all had our share of it and thank the goddesses that we have this BB to come to and just dump. You've been through a lot lately so give yourself a break, take a deep breath and EXHALE!

Dee in OR




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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by MaryNY , Oct 19,2001,20:43 Top of Thread Archive
Rhonda-At least you have come to the right place to find people who are completely aware of what you are going through. Can you see a different doctor? As I posted earlier today, get in touch with the BEB Foundation in Texas and have them send you some free brochures that you can hand out to people, describing the condition. And give one to your doctor! Be aggressive on your own part...someone has said that it's a good idea to have a video taken of you when you're spasming, to show the doctor. Whatever it takes, don't give up! A day will come.....
Mary (one of many Voices of Experience)



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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Delaine Inman , Oct 19,2001,20:52 Top of Thread Archive
You have nothing to be sorry about. Your doctor is the one who should be or is sorry! He apparently has a limited experience and knowledge of BEB. Some people can go 7 months, some need it in 7 weeks and some it doesn't help at all. Yes we all know the feeling of thinking this is a bad dream at times and wish we could wake up. Realizing it could be worse and trying to keep things in perspective doesn't work a 100% of the time. That is why we have pity parties occasionally....we try to take turns. We have private ones and shared ones, but everybody has them from time to time. You are human and things have changed dramatically and we cope some days better than others. You and all the others with jobs and children at home or who live alone deserve a medal for courage. You deserve a doctor who is compassionate and either knows how this stuff works or is open to being educated. Take him some brochures, Have the foundation send him a packet and put him on the mailing list. Tell him how you felt when he said what he did. Do it in writing until you get into the words you want to express. And do it whether you change doctors or not. He needs to know how his words hurt you. I usually start out really angry and then rewrite(sometimes several rewrites) until it just sounds honest, but assertive. I've done that with 2 doctors since I was diagnosed and I've gotten written apologies both times. We support you no matter what you're feeling.



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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Sally - in - Idaho , Oct 19,2001,23:40 Top of Thread Archive
Hi Rhonda,

You are all the things you stated above, and that is what makes you "Rhonda." Now you've added BEB, but you are not BEB ... it is just a rather large annoyance that affects how you perform all your other roles in life.

This is where you should come to cry. We furnish lots of tissues (even cloth hankies if you prefer), plus tea and sympathy and a few laughs to chase the blues away. Don't ever fear venting your feelings here. We've all been there, done that ... and will do it all over again many times before we're done.

Sally in North Idaho P.S. Isn't it Kelly who is also a CPA and has two little girls? You two might have much in common to share.




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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Lyn Patterson , Oct 20,2001,03:56 Top of Thread Archive
Hi Rhonda

As June said, for some reason the spasms seems to miraculously stop the minute one enters the doctor's office. With my old doctor I was always saying I needed it and he would try and force my eys open and say - there's still a lot of Botox there !! It may have been there, but it sure wasn't working !!! He also had patients that he said went 6 months. So what - everybody is different. Do what I did and change doctors. It just takes a bit of work to track them down. You need someone who will listen to what you say and agree with you - not force their opinions of how long the Botox should last. 6-8 weeks and mine starts wearing off. My new doctor is OK with that and says to come when I need it. I try to last about 10 weeks if I can. I am in heaven !!!! after years of never knowing when I would get the Botox.
Lyn




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Re: Sorry for being down today

Re : Sorry for being down today --- r coutant
Posted by Christel-California , Oct 20,2001,11:07 Top of Thread Archive
Rhonda, I feel sorry that you are feeling badly, but you have nothing to feel sorry about, crying around is what we all do at times and what the BB is here for, to give support. If not here, where else can you get it?
Your doctor's logic somehow escapes me. You might tell him that it's obvious to you that he has never had Botox injections or he would know that nobody would ask for them, unless absolutely necessary - and then change doctors. It's bad enough to have to live with this disorder, we don't need doctors making us feel worse.
Have some strawberries and cream, that will make you feel better :-)

Christel in Ca.




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