Re: new arrival
Hi Dianne, welcome to the beb bb, but sorry to know you have this disease. I've given you a link below that you can contact the BEBRF to get informtion on the subject, if you haven't already done so.Its hard to tell you what to expect from your first botox injections - we are all so different in our responses. I wonder how many units of botox you got and where the injetions where placed - this information will be helpful to you. You will need to work with your doctor so that you get what's best for you - it may take time to fine tune all this, and a journal of your response to the injections would be helpful in doing so. I am at my best in the mornings after a night's sleep, also - then the eyes get tired and eye rests are in order - hard to do for you as a primary teaching assistant. I worked for a university and had to give up my position there, but I'm at an age that I could afford to stop working. You sound much younger with children going to school and it must be so very difficult for youto cope. A lot of us on the bb have had to give up driving, or only drive very short, safe distances. Many of us can't read books anymore, and have great sensitivity to sunlight and wind. I hope you are using good quality non-preservative drops/creams day and night to keep your eyes (especially after botox) from drying out. Good luck and I hope your eyes improve - keep in touch. June in Toronto (beb/meige)
Related link: http://www.blepharospasm.org
Re: new arrival
Good Morning!!! My heart goes out to new arrival. You describe my frustrations....acceptance is such a big word. When I think I can cope; I find myself back a step one. Blessings, dear heart. June in Toronto: I came especially to find you and share something beautiful that has come to me this new start, beginning of life on Monday here in SC. Wondering how I could get to you, and don't you know that your name was the first thing I saw once I had reached BB. aHa ha. Last BoTox has been weakened by medications for Shingles developed at the nerve endings of my leg a second time....having to stay off my feet to keep swelling down, nothing surfaces to give encouragement about immune system, all those things I've tried to survive on living here alone seem to have drifted off beyond my reach. But behold! A caller for the Prayer Chain local Ridgeland Drive Baptist Church is issuing a Call to Prayer today on my behalf. Then I stopped for my devotion and read the suggested scripture from Isaiah 43: 1. The Prayer Pattern that's always a guide for myprayer time comes from MISSIONS MOSAIC. The joy found in being His cannot be described in words. I am nothing. But even so He has called me by my name. I hear "Kathleen" like my high school principal could voice soooo beautifully; the next thing I'm hearing is "Kitty" like my husband himself could only say at differeent occasions but so lovingly and beautiful. This One in vs. 8 embraces people like me and you who are considered functionally blind. There's more. If you will share your mailing address with me, OK? I was able to pick up a little on the figure skaters last evening....Sarah is someone else I misplaced for the couple from your area. My heart went out in their situation. Glad it worked out fine for them. Do you know anymore than what I have read from opening pages about Doxil and the BEBs who are going a year without other treatment? Thanks for being there. Take a look: Vs. 19. "Behold, I will do a new thing..." Rejoicing....expecting....believing....hoping....trusting.... and no way giving up! Kitty, enjoying a beautiful moment in South Carolina.
--modified by Kathleen Bowers at Mon, Mar 04, 2002, 10:22:12
Re: new arrival
Kathleen, I love your spirit, please e-mail me (click on my name in blue). I believe you and I have something in common - our faith. Joyce in NC - where it is freezing today. I have a daughter who lives in SC - she had surgery for kidney stones today.
Re: Kitty and the Bible
I'm so glad you found help in the bible, Kitty, and especially Isaiah 43:1, 8 and 19. They were obviously meant for you to read right now - the Lord works in wonderous ways, if only we are open to his Word. My eyes are very bad right now - so can't do any more today. best wishes.June in Toronto
Re: new arrival
Hi, Dianne,We are all sorry that you have this frustrating condition. We have all gone through what you are experiencing, and it's no fun. So we make our own fun! Seriously, what will be your worst enemy for the future is STRESS. I urge you to start looking for ways to control the stress in your life, because it will reduce the effectiveness of Botox and anything else you may try. Learn to laugh at yourself and your condition, but not to take it lightly. We will be here to help. I know that working with small children is stressful, no matter how much you enjoy it. And driving is also very stressful. I had to give that up for several years, before I got on Botox. Use this BB as your venting place - we can take it, perhaps more than your immediate family. BTW, I suspect you may have noticed that they have little or no appreciation of your condition. Too bad, but it's par for the course. Stick with us, kid. We want to help. --- Lynn
Re: new arrival
Welcome to the BB. Sorry to hear you also suffer from this frustrating condition. Be patient. It can take up to 2 weeks for the botox to work. Also avoid stress. Giving up driving was the hardest for me to adjust. Fortunately my husband & I are both retired & he could take me if I had to go somewhere. It was a real adjustment. This BB is my support group. I've had Blepharospasm for over 5 yrs. but was just diagnosed in '99. Botox worked some but as of last Aug. I gave up driving completely (except within a mile of home). However, in Jan. of this yr. I had surgery, limited myectomy, & can now drive, read & watch TV again. I still have some spasms & will receive botox March 20, but am so thankful I can drive again.
Feel free to vent your feelings, frustrations, etc. here. Someone will have an answer.
Joann in Ark. where it's winter again.
Re: new arrival
Welcome Dianne. Your story sounds oh so familar. You've come to the right place. Keep coming back. Sorry you are one of us, but glad you found us.
Re: new arrival
Welcome, Dianne. You've come to a good place for support and to ask questions and make suggestions. We'll all try to help and there is usually someone around who has been through each particular phase of this strange, unpredictable disorder/disease.Botox is wonderful when it works, which it does well for some and not at all for others. I have injections of 100 units every two months and it helps considerably with the spasms, but not the light sensitivity. You don't mention that as being a problem for you. Each Botox session can give a different reaction also. I've had some that helped a lot, and others that were so-so. I'm sure it is difficult for younger persons who are still trying to work and who have children at home to care for. Some of our young mothers will most likely be responding to you. I was a school librarian and could no longer work, but I was old enough that i could take early retirement. We'll hope that your co-workers will be co-operative about making your job as stress-free as possible. The tired feeling never really goes away. I think it is partially from the squinting and squeezing that goes on constantly and from the stress of never knowing for sure how the eyes are going to behave, or when they might shut down at a crucial time. Hang in there. Come back here oftn. The most important trait you can have is a sense of humor. You'll need it. Sally in North Idaho
Re: new arrival
Hi Dianne from Western Australia. You have come to the right place for information. Everyone has different experiences and different doctors have different methods of treatment. Until I found this BB, I was gong to a doctor that treated everyone the same, regardless of their different needs. Since learning how to go about finding a good doctor from this BB, I have found a wonderful Ophthalmologist who has reduced the number of units I was getting (75 down to 40) with a much better result. I go about 10 weeks now before needing the Botox. I have had BEB for 13 years. Luckily, Botox gives me an excellent result, without it I could not drive or read or watch TV. It is essential that you work with your doctor to establish which are the injection sites you need. My new doctor studied the areas around my eyes to see what muscles were causing the problem and injected accordingly. Good luck. Lyn - where it is the beginning of Autumn but still warm
Re: new arrival
Your Dr. may have given you a minimum of Botox since it was your first time and he didn't know exactly where you needed the shots. I know mine only used 25 units the first time and since then , he has used 100. Also , I can tell him which muscles are causing trouble. You sort of have to work together as a team. Ann Doyle
Re: new arrival
Hello Dianne and welcome to the bulletin board. I'm glad you have found us. I have had BEB for almost 7 years and have been receiving BOTOX injections for almost 6. I am currently on my third doctor. My first set of injections didn't work at all so don't be discouraged. It takes time to get the right dosage and sites. I gave up my job as a CPA a little over 2 years ago (I guess you can't call it retirement when you're only 30) and I'm now on social security disability. I'm a moderate responder to BOTOX receiving 100 units every 8 weeks. I usually get relief for about 4 weeks. Driving is always difficult so I stay within a couple of miles from home. My daughters are 6 1/2 and 4 -how old are your children? I remember in the beginning I got horrible headaches as well. I was taking Aleve every 2 hours to control the pain. Now I rarely use anything - luckily because a couple of years ago I developed an allergy to asprin and ibprofen so I'm stuck with Tylenol. I, too, am much better in the mornings so that is when I try to run the few errands I can still run. I go downhill as the day goes on. While I still struggle with driving, reading, light sensitivity, wind sensitivity and all of the many other things that go along with this, my quality of life has improved since quitting my job. I just couldn't be a wife and a mom and a CPA with BEB. Hope you keep posting and asking questions. That is what we are here for.
Kelly in Dallas
Re: new arrival
Hi Dianne, Welcome to the BB - I noticed you are from NC, I live in the Piedmont section of NC, near High Point, Greensboro, and Winston Salem.
Sorry that you have this disorder but you have come to the right place. Please post again and tell us your "story". I am sure it will be similiar to all of ours. Joyce in NC - I am making sour dough bread again. Takes two days. I fed "Herman" this morning, I will make up my dough tonight and in the morning, "punch" it down and make two loaves. By tomorrow evening you should be smelling it bake again.
|