Re: re. support
Becca, let me first tell you the Lord is never too busy--He knows exactly about your pain and tiredness and will never leave or forsake
you...your answers to prayer are not what you want them right now but
he promises not to give us more than we can bare if we trust in Him.
I will add you to my prayer list. I am so sorry you are tired--please
keep trusting and hanging on. We all love you and have some idea about
your frustration so keep believing and we're with you.
God bless you. Joanne M. San Diego, CA
Re: re. support
Hi Becca,
I'm glad that you posted again. Someone will always be here for you.
We've all asked those "dumb" questions at one time or another. Sometimes we even have to ask them again and again just for reassurance.
It has only been a few days since your injections. Some people say that they start working right away but for most people it takes one to two weeks. I am usually at my best 3 to 4 weeks after the injections. Everyone is a little different. Hopefully things will improve for you over the next week or so. Are your eyes still squeezing closed?I thoroughly understand when you talk about being tired and frustrated with your situation and not being able to see or do anything. I get the same feelings and have even compared it to not really wanting to go on with it. Many times when things are really bad, all I want to do is curl up in a ball and lay on the bed or couch and have it just end. I feel so worthless at those times. I, like you, would never commit suicide but I can relate to that feeling. There is a difference in feeling that way and actually acting on it, though. I always know that I may have a span of bad days but then things get better again.
Hang in there and know that you are not alone. Let us know how you are doing. We do care about you. Shirley in AR.
--modified by Shirley-Arkansas-USA at Sat, Mar 17, 2001, 14:00:23
Re: re. support
Hi Becca
Like you i am glad that i found bb. I feel dumb about asking questions.I still have trouble going on line because i feel like i am notworth messing with. I know its not true but we all have really weird feeling. Dont give up .The lord is with us keep faith.He will help us cope with this.
God Bless Colleen
Re: re. support
Colleen, Please don't feel like you aren't worth messing with. We are all here for varying reasons. Some are at a place where they need information and support. Some are at a place that they can give advice and offer support. We are all looking for answers and a better understanding of this disorder. Sometimes, I need support and information and sometimes I am able to give this. I read this bb for a couple of months before I dared to post anything. We all come from different backgrounds and experiences and can share these things. We ask and we answer. We support and are supported. We share and we teach and we learn. I also need a little humor mixed in with this. Sometimes I just want to talk about rocks and dandelions. It has also been easier for me to participate and fill like I belong here simply because i have met some of the people that routinely post on this board. At last years conference, I was able to meet Virginia, Delaine, Cynthia, Alan and Don Peaslee(I know he is reading this, he just won't post). I met a few others but they don't post as often. I have never met Sally but I feel like I have.
None of us have all the answers, but without the questions, where would we be? It's the questions that keep all of us going. And since we are all different, you get different responses which cause us to sit back and think about the different aspects of things.Shirley in AR. rambling
Re: re. support/Colleen & Becca
Colleen & Becca,I have those days too when I feel worthless or not worth messing with, but I refuse to give in to this disorder and give it any more power than it already has. And when I think that I will be battery operated for the rest of my life (I had the DBS surgery), I just want to die now. But then I think how lucky I am to have even had the surgery and I feel better. I feel like I want to make a difference in somebody elses life who has dystonia or blephs because I didn't go through this surgery for nothing. So please don't ever feel that your questions are dumb or that you are not worth messing with. You each are part of the BEB BB family and we care about you! So stick around and we might learn something!!!! Dee in OR
--modified by Dee in OR at Sun, Mar 18, 2001, 00:26:39
Re: re. support
Becca and Colleen
When I was diagnosed last year I was so down and thinking there was no one I could talk to. I finally found the bb and what a relief to know there were other people with the same condition. I read the bb before getting on line and asking questions. I still have my notepad where i wrote down medications,alternative medicines. If it was on the bleph page I wrote it down. My condition has improved quite a bit tht I was able to go back to work. I was blessed. Keep your spirits up.
We are all here to help you.
Priscilla-Dallas,Tx
Re: re. support
No my eyes are not squeezing as much. I quess I just have to be patient.
and pray, and pray, and pray. I'm glad to hear that it does take a couple to a few weeks to work. I was thinkint it wasn't going to work. thank you so much for your reply.
Re: re. support
Bless you, we've all had those thoughts when we are having our worst days and nothing has seemed to help. I know I certainly have. God is never too busy to hear our prayers. He didn't cause this and for most of us, it is not going to be zapped away the way we prayed it would. Faith, friends, family give us strength in our darkest nights of the soul to get through anything, even this and we come out of the feelings of despair stronger and changed. The more we focus on reaching out to help one another get through this, the stronger we become. We are here for you. Tell us when you are hurting, Cry when you need to, Scream it to the wind, Write it down, Sit quietly alone, Surround yourself with love, Think of what you can do, Pray for strength, Stay in the Moment, Nurture yourself and one day you wake up and find you are thankful to experience a new morning and life is still a gift even when your eyes or closed or open. That's what works for me. Don't give up!
Re: re. support
Becca,
For many of us, the first time on the BB was to ask a question. It can take a lot of courage to ask something that you think is "dumb", but you may be doing someone else a favor by asking what they want to know, but were hesitant to ask. Sometimes it even helps the rest of us to re-examine our thoughts, symptoms, experiences, etc., when we try to answer questions.I remember one day when I was still undiagnosed and having a really bad day, thinking that I could finally understand why people commit suicide - that if I knew that I would feel like that all the time for the rest of my life, I wasn't sure I could handle it. It was a momentary thought, quickly gone, but it made an impression on me. Back when I was being treated for breast cancer, I realized that my prayer would always be to please help me deal with whatever it is that I have to deal with today. It still is, whether it is my health or my "wayward" children (actually they're good kids - they just sometimes seem exasperating) or anything else going on in my life. That prayer and a smile on my face (even when I don't really mean it) have seen me through a lot. Hang in there. We're with you.
Virginia in AL
Re: re. support
I have the thought the exact thought that Becca wrote and I have also had the exact thought you just said Virginia, about understanding how and why suicide happens. Like you, it was a scary and yet a profound moment, to acknowledge those feelings and own them. At the same time it helped me face that dark moment and realize that it was something I would not or need not fear again. Becca I am so glad you posted and you told the truth and helped us remember why we are here...to help each other. No one better or worse, no one with questions dumb or answers any wiser. Just the same road and helping each other find the way. Becca you are such a blessing to us. Like Shirley said, one day it's her down, the next day someone else. But someone is always here to listen, to care, to make you laugh, to cry with you and give you cyber hugs and cyber chocolate to help you and to help us all make it to another day.
Re: re. support/Becca & Colleen
Dear Becca and Colleen,God is never too busy to listen to us, but He doesn't always give the answer we are demanding. Sometimes it seems we never really get a clear cut answer, but He is there with us. You are both worthy persons and are lovingly encouraged to post your fears, frustrations, angers, and also the happy thoughts on this BB and we'll all be here for you in one way or another. There always seems to be a few hanging around to listen and comment. Becca, I have forgotten ... was you first Botox treatment helpful? I did not experience a whole lot of noticeable relief until my third set of injections. I'm sure that Clara Allen would not mind having me mention that several months ago she was in the depths of despair and seemed to be barely hanging on by a thread and not at all sure that she could deal with the problems that beset her. We all encouraged, privately and on the BB, prayed for her each in our own way, and gradually she found things that she could do to make her life go more smoothly. Our last communications from her have shown her to be a vivacious lady full of plans to make lemonade and get on with what she is able to accomplish while dealing with BEB. I know that with faith and time, God will show both of you ways to cope with this dratted condition. Sometimes I have had to give in to the despair and cry and get angry and then work myself up out of what I call the black hole. There are also times when I have to sleep a lot. Do whatever is needed to rest your body and soul and to brighten your spirits. It is most important to be well rested to face this. Don't be afraid to post "dumb" questions. We all do that and they really aren't dumb if they are a concern to us. Ask away. Stay with us and we might even have a cyber party again one day soon! You've never been to a party until you've been to one of those!! I CARE ABOUT YOU!! Sally in North Idaho
Re: re. support/Becca & Colleen
I've been reading all the supportive posts from everybody, and it really has helped me as well. Evelyn
Re: re. support/Becca & Colleen
Thanks to all of you for your support.It really helps a lot to talk to someone who understands.I get a lot of support from my family, but until you experiance it yourself it is hard for them to know your feeling. Thanks for listering to me. Have a good day
Hugs to all
Colleen
Re: re. support
I have had BEB for almost 6 years. I just turned 32-my daughters are 5 and 3. I worked as a CPA for almost 5 years after my symptoms began. My injections weren't working very well after my second daughter was born. I was like you-I was ready to be put out of my misery! I finally went out on disability Dec of 1999. I have disability insurance, not SS, and with the type of work I do getting approved for a 2 year period was not hard. Now that I am at home and don't drive or read much I do feel better. I have started taking magnesium, calcium, b6 and b12. I still get 100 units of botox every 8 weeks in my eyelids and surrounding muscles (total of about 20 shots.) The first doctor that I used gave a standard 5 injections in the exact same spots for all patients and I wasn't getting much relief. Plus, I developed the "droopy eye" in my left eye each time and my left eye would be half way closed for about one month. I have been with my current doctor for 4 years. He customizes the injections to meet each patient's needs. My brow above my nose is a big tension area. There are 3 different mucles just in that area alone and he injects all 3. It has taken me this long to accept my illness so don't be too hard on yourself. I was interviewed in the Ladies Home Journal article this month about Botox. I am hopeful that other media will follow suit to help spread the word. Please know that God hears your prayers. He sent you to those of us on the BB who can help you thru this which is something I wish I would have had when I was newly diagnosed - my doctor didn't see fit to tell me there was a foundation at the time! The foundation can give you a list of doctors in your area and there may be another one better suited to your needs-that's how I found Dr Merritt in Dallas.
Re: re. support
Kelly ... I just purchased the April LHJ today and read the article. It was encouraging to see that the emphasis was on the health issue and not cosmetic for a welcome change. Each little bit of publicity helps.I am sending a letter to my neurologist letting him know about the article in case he doesn't already. Thanks for using your time and energy to help with the article. Sally in North Idaho
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Kelly, I mentioned before how much I enjoyed the article, and Idid e-mail the editor about `the tics'!! I took the article to a Dystonia support group meeting today and shared it with them.I hope you are taking B12, methylcobalmin type, and B6 P-5-P - those 2 types are the best, from I understand. June in Toronto
Re: re. support
Dear Becca-
Almost 7 years ago I rolled my truck and totaled it all due to BEB, at the time I had not yet been diagnosed. All the doctors I went to kept saying that it was all in my head, psychogenic. It was a few weeks after my accident before I was able to find a neurologist to properly diagnose me with BEB and a month later, with segmental dystonia. At the time my wife was 6 months pregnant with our 3rd daughter. I remember feeling the same way you mentioned in your post. When I went to the doctor for my first Botox treatment I really expected to walk out of his office with my eyes open, no one had bothered to tell me what to expect. I was very crushed when I left his office. I didn't know that it would take longer to work and that it might take several treatments before I got any relief. My doctor later explained that it could take up to a year before proper dosage could be reached. It was from my 4th treatment that I began noticing some relief and with God's help I overcame those feelings of not wanting to go on, of feeling worthless. Every night when I go to bed and turn off the light, no matter how bad the day was, something inside of me always lets me know it wasn't that bad and that I will have good days and what a blessing it was that I nor anyone else wasn't killed in the accident, since my truck rolled 4 times. Becca, you will have good days just keep remembering that, this is what helps me to go on. I look forward for those good days that come among the bad.
In May of last year, I was pretty much forced to quit my job and go on disability. That was very hard to do and hard to deal with. I felt worthless because I was unable to provide for my family; but while I saw worthlessness, God saw worthwhile. He is able to see the bigger picture of things and He has given me the most important job I could think of. I am at home for my kids. I am there before they leave for school and I am there when they come home. What a blessing for me to be there for them. I am also able to help out with the chores around the house; cooking, cleaning, etc. Which has helped my wife out immensely to not have to come home with all these chores waiting to be done. I am not always able to help out like I want to, but I do what I can when I can.
Becca, God is always there for you, always listening, always there to comfort you and He will never give you more than you can bear. He will bring you through the bad days to the good days. Always look forward for the good days coming up. God bless you--Rolando
Re: re. support
It was just about 8yrs ago when this very unwanted guest entered my life.The long road trying to find out what was happening, only to find there was no cure was so devastating. That hollow feeling of not being able to do for my children was just too much for me. Not being able to drive made me feel like my legs were cut off. I wouldn't leave the house because of embarassement. I wouldn't leave my room if my kids brought their friends over. I stopped talking to everyone. At that time I had ST also, I was not able to keep my head up, and it was very painful. I couldn't eat, felt like I couldn't breathe, and then some.
It is very scary to be so depressed and afraid that I would never be
"normal" again. I was ready to end it all.
I tell you all this because I can tell you that I'm very much alive.
I am working part-time, I am driving, I can walk into any place with
any kind of lighting. I can do anything for my kids. I can do everything
for myself.
I can do Nothing Without God.
There are times when the sun bothers me. There are times when I talk
my eyes shut. There are times when I'm laughing my mouth and jaw
decide to feeze. These are the times when I have to stop and say
this is only a set-back. I have to realize I need a little extra time
to quiet down and get my mind/body/spirit back in balance. Keep my
thoughts "in the moment" and back off and let God be in control.
I've tried a long list of medical and alternative treatments.
Some helped some didn't. For me stress-management is a must.
I keep you all in my thoughts and prayers daily, and I thank God
for this BB.
Mindy
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