Posted by: Cynthia ®
01/04/2003, 10:34:53
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Welcome, Jackie! I've only attended one conference - 1999 at Lexington, KY, where I met a couple of people on this board. It seems to me that most of us meet right here - and sometimes that develops into personal email, phone conversations, and face to face meetings either at a conference, support group or in some cases, when people realize they live close enough to one another, a get-together in the area. Sometimes all we know are the familiar names, but it seems like we are friends because of the common bond we all have - a DISORDER which affects us in many different ways.I'm glad that you feel your case is relatively mild -- we hope that it remains that way and that you can continue in your job. Substitute teaching sounds VERY stressful without seeing double! Please continue to post and let us know how things are going and what is working for you.
Cynthia in IL What part of the county are you from? --modified by Cynthia at Sat, Jan 04, 2003, 10:36:49
Modified by at Sat, Jan 04, 2003, 10:36:49
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Posted by: Jackie Dewey ®
01/04/2003, 10:44:53
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I live in Northeastern Colorado. I travel to the south part of Denver for my injections. When I first was referred to my specialist, I was told that there weren't many in Colorado who gave botox injections. I don't know if there are more qualified specialist available now. At one time I was asked if I wanted to be the subject of a workshop where my specialist was training other doctors. I had a scheduling conflict and was unable to do it. I'm not sure I want to be a guinea pig for trainees!!I enjoy substituting. At least if the day is going bad, I have comfort in knowing that I don't have to face the same kids day after day.
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Posted by: Debbie Campbell ®
01/04/2003, 10:46:33
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Hi Jackie,
Although some have met at the conferences, many have not. Like you and probably most of us, we went looking for others with BEB and discovered this BB. Like the others, I felt very alone with this and one night went in search of other like myself. There is no support group where I live nor is there one in my surounding area. I came in contact with everyone on the BB by chance and found the support I needed at the time. I too think I have a mild case of Blepharospasm. I don't post very often. I'm more of a lurker, but I continue to read when I can find the time. I have been fortunate to be able to continue driving and working although at times, it has been difficult as I am sure it is for you teaching a class full of grade eight students. My daughter is in grade nine and I hear the stories, so I know what your up against each day!
I work for a company that distributes outdoor/casual wear.
Debbie from London, Ontario
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Posted by: Jackie Dewey ®
01/04/2003, 11:05:39
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I, too, continue to drive although at times it is difficult and I allow one of my children to do the driving. Before Botox, I was getting to the point of very limited driving. My neck would get very sore because I would drive with my head tilted back in order to see out of the slits in my eyes. I know that was taking chances but fortunately I managed. Now if I am having a bad day I just stay home.I seem to have the most difficulty when I am extremely tired or stressed. I asked my doctor if stress could override the botox injections. She said it was possible. I certainly have had a lot of stress the past 5 years but that is another whole story in itself.
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Posted by: Debbie Campbell ®
01/04/2003, 11:24:54
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I know stress plays a role in this and when I'm in feeling very stressed, I can barely keep my eyes open, so at those times, I don't feel the effects of the Botox. It's very difficult to reduce the stress in your life especially at work. When I'm home, my eyes are certainly much more manageable. At work I usually have to hold one eye open (my left, which dosen't seem to want to stay open at all) and typing is certainly a challenge (I work on a computer all day). The dose of Botox I receive is not that great so I am hoping, with increased doses, I will get to a point where the botox is more effective. My second set of injections were fantastic! I felt normal again, struggled very little but the injections since then haven't produced the same results and my neurologist advised me not to expect them to. Although I was very disappointed, I haven't given up hoping that one day they might be.
My eyes don't 'clamp shut' from the spasms, they just close and won't open. I don't have the tight 'squeezing' of the eyes closing like most on the BB. It's a very frustating disorder.
Debbie
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Posted by: Ann Doyle ®
01/04/2003, 18:31:43
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Jackie, it seems like just reading your replies that we all have something in common but no two of us are alike. I have never been to a conference unlike some others but as the last one said, I have to hold my left eye open to see. My right one stays shut. I feel like I have friends on this bb because we chat with one another all the time and you get to know them. I'm the cute one with the curly hair. @:-) Ann Doyle . Actually I do not have curly hair but I can get away with it on the bb. (:-( Ann
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Posted by: Rita Molnar ®
01/04/2003, 11:13:39
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Hi Jackie...
I've not met a single person from the BB, and I've not attended any conferences(..yet, God willing, I'll get to meet some in June of this year when they come to Philadelphia, only 1 hour away from my home).
BUT...I feel like I know everyone, just from hanging around the BB. I don't post every day, because I'm busy at home trying to be caregiver to my 95 year old dad, and sometimes I pop in after midnight, just to catch up on everything that's happening. I've gotten to know a lot of people, here. I know that Shirley and I share "caregiving" responsibilities. We both have dads who live with us...I know also that she takes good care of the photo albums. I know that she recently lost a very beloved pet. I know that Joyce is a real fine tole painter. I know that she is right now awaiting her meeting with Dr. Anderson, and will, hopefully have her successful surgery ...(been praying for her quick recovery, and relief from the BEB misery). I know, also, that her husband found his underwear (thank goodness)... Although I don't speak with Evelyn regularly (only once or twice), I admire her so. She is a caring, sweet person, with strength I can't even imagine... There are so many others I can tell you about--Delaine, Anne, June, Kelly.....never met them, but I know them from their words, their comments and their genuine concern for each other. Yes. This is a nice place to visit. Here you can receive BEB information ... pity ... spankings... encouragement ... friendship ... caring. And here, you can add your own words to offer these same things for others to share. I like it here. It might be the single most important reason I'm able to tolerate BEB and Meige. I have BEB and Meige, and from what I read, relatively milder cases of both, although my Meige is beginning to give me more problems lately. I'm becoming a little bit of a maverick next week on the 13th, when I go in for a blepharoplasty (cosmetic surgery)--not a recommended procedure for blepharospasm, but one I'm opting for because I sense it might relieve some of the pressure from my eyelids, which seems to be trigger to my BEB. But mild symptoms or severe...we all share so much in common, especially in how we feel about this affliction. So, I'm glad you're here.... hugs....
Rita in New Jersey
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Posted by: Evelyn ®
01/06/2003, 00:46:22
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Thanks, Rita, for the nice words about some of us. Although I don't have BEB, I have many of the same problems, and I thank Judy, my childhood friend fpr introducing me to this BB. As many problems as I have, my heart always goes out to all of you with BEB, Meige and the countless other things that affect your lives. My blind eye has healed well after the surgery to remove most of it. I have had three visits to have my prosthesis made and will go Tuesday for the fourth appt. The prosthesis should be finished after two more visits. Gerry says it looks like my other eye. I haven't seen it yet. I can't even imagine having a normal looking eye. I hope your procedure goes well for you.
Evelyn in WA state
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Posted by: June in Toronto ®
01/04/2003, 12:05:22
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Hi Jackie, welcome to the group. I attended one conference in Columbus, Ohio - it must have been about 7 years ago, long before I started posting on this board. I met one beb'r from the bb when I was in San Francisco, but she seems to have stopped and lost touch.I know others just from their posts and mine - they are a great bunch of caring, funny people - we all share this disease, as I choose to call it. They understand what I'm going through and vice versa - other people don't walk in our shoes and its very difficult for them to try and comprehend the fullness of beb. Talk to you another time. Best wishes June in Toronto (beb/meige)
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Posted by: Jeannie Day ®
01/04/2003, 22:59:00
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June, I worked at that conference in Columbus, OH. During one of the question and answer times I carried the microphone around in the audience. That was my first conference. I have been to St. Louis and Lexington-- 3 and that's all. Since I am now teaching, it is hard to get to the conferences because that is my first week of school. I met many of you at those conferences. If any of you have never been to one, you should try. It is well worth it.
Jeannie from OH
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Posted by: ClaireW ®
01/04/2003, 12:26:08
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Hello and Welcome...all the way from Macclesfield UK. I was diagnosed with BEB last Spring...and found this board soon after...and the people here have been truly wonderful friends ever since. They provide laughter and comfort, understanding, wisdom and very practical guidance on things like eye masks and eye drops etc!
I used to teach...but taught older special ed. in a school about one hours drive from home...after the drive to work I was ready to go home..so quit and I am now a full time Mum to two teenage boys...who are a great blessing to me!(Well most of the time....:O) ). I also have three delinquent cats.
I am sure you will find as much love and support on this board as I have...glad to meet you....Colorado is the only part of the States i have ever visited..went to a conference in Snowmass and then travelled around the state a coupole of weeks...Leadville, Telluride, Durango. IT IS SOOOOOOOOO BEAUTIFUL! We would love to go back!
Much love,
Claire
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Posted by: Lynn Yarbrough ®
01/04/2003, 15:24:49
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Hi, Jackie, and welcome. I share your probelem/concerns with double vision, but it's not a big deal. Tell your Doctor about it -- it's largely a matter of getting the right dosage and injection points, which always takes a while to get just right. I have a region in my field of view, about 40 degrees on either side, where my vision doubles, but it's fine closer to the center. My effect shows up when I am trying to turn right and I see cars approaching from the left -- I see twice as many as there are, which is a good thing! Keeps me careful!Be patient. Getting the dosage/points right usually takes about a year, perhaps longer. Be happy you have a good diagnosis -- it makes all the difference in the world, believe me. --- Lynn
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Posted by: Joanne Matuzas ®
01/04/2003, 15:58:38
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Jackie, thanks for sharing. I've been to the last 3 conferences
and am grateful that I've been able to afford to go and also to travel by myself. Some others are not as fortunate. I lead the San Diego support group so for me the conference is an excellent networking tool and I want to keep up to date with regard to the latest information and the different perspectives of the doctors who participate and who have a storehouse of knowledge with regard to this disorder. Let me also reiterate there is a storehouse of knowledge and experiences on this bulletin board as well. The folks who participate are open, friendly and eager to share their experiences which we all learn and benefit from. I have beb, meige and a breathing dystonia.
I still drive, still work but am considering retirement sometime in the near future. Stay with us, share and you will be glad you did. Take care. Joanne M. San Diego, CA
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Posted by: Sally - in - Idaho ®
01/04/2003, 21:12:55
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Hi Jackie,I have never been to a conference and have not met anyone on the BB face-to-face, but I have many friends here. There are several with whom I correspond now and then, a few whom I am in contact with several times a week. I have had phone conversations with some. It seems strange to have such good friends and to have never met them, but I do consider them among my dearest friends. Sometimes a particular person will share the same interests as you and that is a get-acquainted ploy. My first contacts were with people who love dogs as much as I do. They were there for me when our beloved "Kelly" died last summer. We've also shared many laughs and good times at cyber parties. I hope you will become a regular and get acquainted with all of us. Sally in North Idaho, BEB/Meige (moderate case, sometimes worse)
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Posted by: Shirley-Arkansas-USA ®
01/04/2003, 22:09:57
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Hi Jackie,
I'm one of the noisy ones. I've been fortunate to have attended the last three conferences and have met some of the wonderful people on this bulletin board and hope to meet more. Others I have just known through their posting on the bb. Some of those have led to private emailing and a few phone calls. Heck, my husband even emails some of these people. I keep telling him that he is stealing my bb buddies. :-)
We really get to know each other right here. We feel safe here and many of us bare our heart and soul. I believe that the regular posters are known quite well. I'm an open book. Probably too open sometimes. :-)This bulletin board made a major difference in my acceptance of this disorder. I'm quite sure that I wouldn't have handled things as well if I hadn't found it. So, just join in Jackie. Shirley in Arkansas
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Posted by: Lyn Patterson ®
01/06/2003, 00:46:22
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Hi JackieI live at Lake Clifton in Western Australia, a long way from just about everyone else on the BB. It is summer here and really starting to warm up. Discovering the BB changed my life - I found a new doctor who is just so much better than the old one and have Botox every 8-10 weeks. This enables me to live an almost normal (whatever that is) life except when it starts wearing off and then driving is the worst problem. Lyn - completely wrapped up in frog watching at the moment
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