Posted by: Shirley-Arkansas-USA ®
07/04/2003, 11:08:33
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Hi Essie,
We can relate to your difficulties. When my symptoms first started and were getting progressively worse and before I was diagnosed, my husband believed and kept telling me that it was just stress. I was a school nurse and he felt as soon as the summer vacation was there and I could get away from my job that I would get better. I liked my job and yes I was stressed but the stress was primarily coming from my symptoms and not knowing what was going on. Having other nurses as friends, they were sympathetic and concerned but they didn't have a clue what was wrong with me either. When I finally did get a diagnosis and talked with them about it and the treatment with Botox, the usual response was "OH??? isn't that for wrinkles and such?"You might go ahead and contact the foundation and get some patient brochures and handouts for family and friends. Symptoms are listed and explained and you could at least show them that these are the symptoms that you are having. And as far as the comment on getting cosmetic botox treatment for cheap you might just say "You my friend, might consider doing that but personally, I'd just like to be able to see." Shirley in Arkansas
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Posted by: essie ®
07/04/2003, 12:35:32
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Hi shirley
Yes yes yes!!. All my freinds and family know "something has happened". They know I am super stressed and think that the stess caused the "eye thing", the "eye thing" (that I know now is Bleph) is the cause of my stress. When I present to a local doctor with these "strange" symptoms they ask about my stress levels, my stress levels are pretty bloody major, but are a result of my symptoms..not the cause!!. I am spending a third of my waking life almost blind!! of cause I am stressed!!. I REALLY can not go on like this, the people closest to me do not believe me, I am not functioning propery anymore, everyone thinks I am a bit crazy..maybe I am.. sorry this is going to be long.. Shirley do I have Bleph??..When I am at home alone doing housework and yard duties I am not affected
when I read I am fine
I used to be able to watch TV.. thats gone now, I cannot watch Tv or videos
Driving is a nightmare!!
If I try to contribute to a conversation it sets it off
Any social situation (even with close freinds) sets it off .
and sometimes it just starts happening with no trigger I am my local libararys best customer , the only thing that makes it go away is to read. Everyone is begining to notice, I feel like a fool, and am sure I must look like one too. I cannot wait six weeks, why am I not believed?,family and friends are conspiring togeather to "give me a rest" I do not need a rest.. I just want my sight back
I am feeling pretty hopless.. please help cheers essie
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Posted by: john from illinois ®
07/05/2003, 11:09:12
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I think everyone on this board knows exactly what you’re going through. That’s what makes this better than Doctors. They don’t really understand what it’s like trying to talk to somebody and your eyes keep closing. The more you try to keep them open the worse it gets. Talk about a paradox. This may help. The “janitor” where I work saw me holding my eye open so I could see to type. After giving it some thought he brought me a ring he got from a juice bottle and told me to try that instead of using my finger. It worked great at first. When I did that my other eye would open also so everything was great. Only problem was that the plastic ring hurt cause it was like cutting into my skin. The solution for that was I cut some Knuckle bandages in strips to cover the ring. That worked great; until my muscle spasms got stronger to the point they would pop the ring out. A rubber band crazy glued to the ring is the answer for that. I really hoped that this helps you. You still have to be careful and drive defensively. Al least this allows me to function. It looks stupid as hell and you feel selfconsious about it. People try not to laugh, but like I said it looks weird. I generally wear sunglasses so they can't see it. You just have to adapt to what you can do comfortably. Good luck.
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Posted by: Ann Doyle ®
07/06/2003, 11:06:54
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Shirley, I tape my eyes open with surgical transparent tape. It isn't all the way transparent but it holds my one eye open. The other doesn;t open for anyone or anything. I have to remember to take it off at night. It sometimes gets sore and even forms scabs. It has also removed most of my eyebrows on that side. At this point , I have given up almost all hope of being Miss America. And I was sure to win the talent contest with my tissue paper on a comb. Such a waste of talent and beauty. Oh Well!
The tape is hard to find. Every once in awhile, I'll find it in a drug store and buy all they have--usually two. Also I have a daughter and a friend who are nurses and one works in a hospital and now a drop in ER room. They sometimes find some for me. I now have transparent 3M from them but it seems to me when I find it in a drug store it is made by Johnson. It is near the bandaids. I really think you'll like it. Good luck. Ann Doyle
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Posted by: Delaine Inman in TN ®
07/05/2003, 12:13:14
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Shirley said it well and gave you good advice. The misunderstanding of what you are feeling and experiencing is common. This is a very frustrating disorder to have and to treat, so it is no wonder we don't feel nuts and others think it is a "mental thing". I'm a holistic nurse and believe strongly that everything is connected and we go through stages from the beginning and learning how to cope and how others cope with us is a process. Stress does make it worse, but it DOES NOT CAUSE IT and don't ever let yourself believe you can simply destress and things will be the way they were or that you did this to yourself on purpose and control it if you just put your mind to it. The crazy thing is that destressing does help decrease symptoms, just as rest, yoga, meditation/prayer, and a million other stress management techniques may....key word is may......help. What works for one doesn't work for all. I am much better today than 4 and a half years ago. So there is hope. The trick is there is no one formuala that works for all...it is a process and an unfolding process. When you are first diagnosed you go through the stages of grief and bounce back and forth for as long as the symptoms are interfering with your life. Life may never be the same, but we do learn how to cope better and keep trying new things. Both traditional and nontraditional treatments have helped me. At some point it is less important what others think or understand. That is why, especially in the beginning you need the support of people who are going through or have been through what you are experiencing as your reality now. No one else, not even close family and friends or doctors can give that gift of understanding to you. Eventually the fear was replaced by a calm that I knew I would survive and be able to handle whatever. I focused on trying to be as healthy as possible and later began to help others. Now it takes energy to live as normally as possible, but not the energy that zapped me in the first 2 years. I've been an experimental rat in trying everything and found a combination of the right doctor, the right dose and sites for Botox, the right medications, the right supplements and herbs, the right kind of exercise and stress management techniques and the right attitude to live my life. It took 4 years and the first 2 were miserable beyond belief. When I look back I am amazed at the courage and energy it took. The BB reinforced my courage, my hope, my faith, my knowledge and the will to continue. It paid off. Feel what you are feeling, educate yourself and others and know you will handle this. I know this sounds crazy now, it did to me when I first heard these words, but BEB has given me many gifts and taught me many lessons that I would have never known or had. So take a deep breath.........breathe deeply often and listen to the inner voice of guidance. This has been a spiritual journey as I learned to just trust the process.......not give up or into it, but surrender and trust it and myself. I use to wish for more time......I got it in a way I never imagined the first two years when I could not drive, read, watch TV or keep my eyes open.......time to grieve, reflect and contemplate and value the things that are important in my life. Now I've turned a corner and I am able to do those things again......not the way I once did, but with more appreciation when I can and I can more each day. Bless you and know you are not alone.
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Posted by: Sally - in - Idaho ®
07/04/2003, 15:41:48
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Hi Essie,You just go on being a "taker" as often and for as long as it helps you. That's what we're here for and we're all on the taking as well as the giving side of the fence at different times ... just depends upon our mind set and how life is going at the time. I can empathize with you that the spasms are less when alone, and worsen when talking with other people. All I have to do is be near my mother or even mention here, and they are set off ... because she puts me under tremendous stress. Although it is difficult to read, that is still relaxing to me and calms my nerves. This whole thing relates to nerves, so anything we can do to calm them is of benefit. Books have always been my world (I am a retired librarian) so when I could no longer read more than big headlines, it was trauma to the utmost degree. This lasted about a year and a half, then all of a sudden the Botox began to help. Apparently the sites and dosage were finally worked out to the best advantage. It was like heaven to be able to actually read a book again, although much more slowly and tediously than in the past. Just hang in with us. Ask all the questions you want and we'll do our best to hold your hand and walk you through this scary situation. Good luck. Sally in North Idaho
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Posted by: Barbara Molnar ®
07/04/2003, 15:45:43
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Good luck Essie. I'm seeing a neurologist on the 18th and then see the neuro-opthomologist to see if I can get the Botox shots. I can't wait to hear how you do. My prayers are with you, I know you will do fine.Barbara
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Posted by: Ann Doyle ®
07/05/2003, 08:45:14
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Essie , read my reply in Genetic Marker. You may have hemifacial and not Bleph.
As far as people thinking it is all in your head. You will find many of us , myself included that went from DR to DR trying to find out what was wrong. I did for two years. They, the DRS kept saying it is all in my head and prescribed tranquilizers and said I needed a physciatrist. There you are . The voices of authority telling you its all in your head. It's hard to believe in yourself. Try looking up the site WE Move. Ann Doyle It sure isnot in your head--well I guess it is but it is located near the brain stem . Ann Doyle
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