Posted by irene sieger , Apr 21,2002,22:13   Archive
Hi Denise McKew just read the post message and I know just thinking about the first injections its scary. They were a little hurtful but my eyes opened up really quick. And I kept thinking to myself maybe I wouldn't have to go see the Neurologist again. I wear the darkest sunglasss and use the GenTeal gel and Eye drops I use the cold compressives also. I want to go back to work in May but I'm scared that I won't be able to do the job well. I'm a library-Clerk and want to finish up the School Year. I've been working for the District for 30 Yrs already. I won't know if any of the others with BEB work or they are on disability. Tell Me a little about youself. I'm going to keep posting messages I find that everybody has a little to contribute and learn more about the illness. I love the Poem you wrote and good luck with your paintings.

--modified by irene sieger at Mon, Apr 22, 2002, 18:00:37

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Re: BEB/Irene

Re : BEB --- irene sieger
Posted by denise mckew , Apr 22,2002,15:00 Top of Thread Archive
Hi Irene,

I'll give you a quick run down of what happened to me: In June 98, I was hit while stopped at an intersection, and that left me with a bad neck, and chronic myofacia pain (neck shoulders and back and chest). It took me 1 1/2 years (approx) to get back to full time work after that Nov. 2000. Then, in May 01, I was hit again on my way to work. This time I ended up hitting my face on the steering wheel, damamging the nerve. I had a twitch in my right eye and ringing in my ear, that grew into facial spasm on the right side, then my eyes started shutting and I could open them, now my whole face can spasm. I also developed trigeminal nerve nuerlagia which can cause crazy pain in my face.
I am 39, and no longer work. I was a customer service rep for a 401K company. I am on LTD and I am trying to get SSA disability. I just applied - lots of paper work.

On the bright side, I am doing some painting, which I love to do. Thank god I can still see colors. I'm thinking that if I ever really get back to serious painting, it will have to be in the impressionist style. Which is good for me cause I hate details!

When I found out I had this I wrote a little poem:

So here's to blinking
and scrunchy faces.
To new adventures
and new places.
I have blephro,
It doesn't have me.
My eyes now close,
but the better I see.

I have been forced to slow down and take better care of myself. And the little things don't matter anymore. Like the big tumbleweed of dog hair at the bottom of my stairs! So I really feel I have been given a second chance. One door closes, another opens.

Take care,

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Re : Re: BEB/Irene --- denise mckew
Posted by June in Toronto (June Floyd,June in Toronto), Apr 22,2002,15:22 Top of Thread Archive
Great attitude Denise - enjoyed your poem.

June in Toronto where today it has snowed just a little, to remind us that winter is still around

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Re : BEB --- irene sieger
Posted by debbie campbell , Apr 22,2002,17:29 Top of Thread Archive
Hi Irene, I too wondered about what others have had to do. How long they were able to continue working after being diagnosed with BEB. I am glad you asked the question and I am very interested in finding out myself to see what I maybe up against.

I don't have any pain or discomfort from my injections. I had my second set done on March 28th and also, I have very little bruising.
I was just recently diagnosed, in January and before this in November and December, I really struggled! About 6 months leading up to being diagnosed things had progress quickly. I could no longer risk driving (hadn't since November but I had no idea that what was wrong was I had BEB. I had just thought I had dry eye syndrome from working on a computer for the last 15 years of work.) so going back and forth to work about 40km on the highway, was an even bigger struggle. It was my turn to host Christmas so there were 16 family members all arriving for the festivities and dinner and I was very nervous about being able to pull it off. Surprisingly enough, my eyes were completely fine that day with very little closure at all. But it went downhill from there I'm afraid. Fortunately, I only lost a few days from work. I was working every other day. I was very fortunate to be able to get my first set of injections very quickly after being diagnosed and began driving again 4 days later. Then, after only 2 weeks my eyes closed again and had to yet again rely on friend for transportation to and from work, for grocery shopping, basically everything. The absolute worst was knowing I would not be able to get my next injections until April! How was I going to manage with work and taking care of my daughter and elderly father but of course somehow you do. Now, my second injections the end of March has worked like a dream. It has been almost 4 weeks and I am still driving. :) I just keep hoping and praying it will last. I do have a lot of grimacing to keep my open, as well, my eyes are very, very dry and usually have to stop on the way to work to use the drops. So all in all work has been doable. My hardest days to get through seem to be Friday's and Monday's. I think because I am straining them so much with work from Monday to Thursday and Monday's because we are alway on the go on the weekends. I have not intention of leaving work and hope I don't get to a point where I will have no choice. This may be wishfull thinking but I have to stay very optmistic about it.
Take care,
Debbie from cold Ontario.

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