Questions from NC


Posted by dianne beavers (dianne Beavers,dianne beavers), Mar 19,2002,16:26   Archive
Hey everybody!
I haven't been on here for a few days. Have had a hard time with the BEB. Lights have been a big prblem the last few nights. I would like to ask a few questions. How many of you out there still work and how do you deal with it? I am having difficulties just trying to keep up the house...ha ha! My eyes are closing more now. Its been 3 weeks since the botox injections. Now they're staying closed for longer lenghts of time. Don't know how much longer I can keep my job like this. Schools out the end of May have to try to make it till then. I dare not try to drive. My eyes close as soon as the car starts rolling. Have to go and check on my parents. Thank goodness its within walking distance. Just have to stay out of the way of those walking trees.


Talk with you later,
Dianne from NC where its cloudy and cool




Recommend Current pageAuthor Profile
Replies to this message


Re: Questions from NC

Re : Questions from NC --- dianne beavers
Posted by June in Toronto (June Floyd,June in Toronto), Mar 19,2002,17:03 Top of Thread Archive
Hi Dianne, I had to give up my job at the university because of beb/meige, but I was almost at early retirement age, anyway, so I managed. Not only could I not have continued to do my job with the fluorescent lights and such, but I couldn't drive there and especially the return trip on dark evenings would have been impossible. I know how difficult it must be for you - hope you can hang in until May. Do you have any short-term disability that you could use before you decide if you have to apply for long-term? Take care.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Re: Questions from NC --- June in Toronto
Posted by dianne beavers (dianne Beavers,dianne beavers), Mar 19,2002,19:49 Top of Thread Archive
Hi June!
Thanks for the reply. I do have a disability insurance I need to check it out a bit closer. Never thought I would need it.
Can you describe the meige a bit more in detail for me? I've noticed spasms across my nose and catch myself with my mouth open more just to breathe. There's also a strange feeling in my throat at times. Almost like a tightening. Sometimes I can't swallow. My neck hurts alot but I think that comes from how I hold my head to see.

Thanks again

Dianne from NC




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Re: Questions from NC --- dianne beavers
Posted by Carol Brown , Mar 19,2002,20:04 Top of Thread Archive
Hi Dianne

I was able to get out on an early retirement from the State. I also got my social security disability because of beb/meige. Believe it or not, I worked as a word processor!! Of all the jobs in the world, that was the worst. It was awful. I really struggled and tried not to let my co-workers know I was having problems. Things seemed to work my way though, because I was able to retire.

It sounds to me like you might have the beginning of meige. Your symptoms sound similar to mine. Do you go to a neuroligist or an eye doctor?

Carol Brown, Naselle, WA, where we have snow in the forecast again.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Re: Questions from NC --- dianne beavers
Posted by June in Toronto (June Floyd,June in Toronto), Mar 20,2002,04:58 Top of Thread Archive
My meige I believe is moderate, unlike some others on the bb. I just twitch a lot from the nose down to the lips - I do some clenching of the mouth but so far the breathing is ok -- except when I have an infection like I do now, but that has nothing to do with meige. Others have tongue thrusting and a frozen smile. Your condition sure sounds like meige - and the neck problem seems due to the way we hold our head to see. Its an awful time for you to be going through - but most of have already gone through it, so we understand at least. Some of us were more lucky than others to be closer to retirement age. Good luck to you.

June from Toronto




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Re: Questions from NC --- dianne beavers
Posted by Ken C. , Mar 20,2002,09:29 Top of Thread Archive
I think you and I are in the same boat. I mentioned the breathing problems to my former neuro and he just blew it off. Now its progressed somewhat and I'm waiting to go to the next Doctor. It takes months to get in to see the good ones.

Im still working only because I'm so close to work and they have accommodated me with a time and work duty change. I also applied for a supplemental short term insurance that covers you between when you are off and long term with FULL pay. Most ST gives a lot less.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
breathing problems

Re : Re: Questions from NC --- Ken C.
Posted by Virginia , Mar 20,2002,13:45 Top of Thread Archive
Ken,
Please share any suggestions that your Doctor might have. There are others of us on the BB who have breathing problems and, so far, I haven't found anything that helps.
Virginia in AL (former Cowtown resident and TCU graduate )



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: breathing problems

Re : breathing problems --- Virginia
Posted by Ken C. , Mar 20,2002,16:05 Top of Thread Archive
Go Frogs!

I promise if I gain any knowledge Ill relay it to the BB. Unfortunately my next appt is not until the first week in April, and he is a Neuro/Ophthalmologist/Pathology/Oncology/Blah,Blah,Blah....
The thing is he is nice and seemed to care back when I saw him 18 months ago when I wasnt so bad. Im hoping now that he can at least refer me to a good BTX guy. The last one did not even want to fill out my FMLA paperwork, which is unfortunate because his injections were not as painful as some. I also just scheduled an appt with Jankovic in Houston. Ive learned not to wait around on one Dr. pinning all your hopes on just him. It takes months to get in to see them.

Ken in DFW




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Questions from NC --- dianne beavers
Posted by Shirley-Arkansas-USA , Mar 19,2002,17:07 Top of Thread Archive
Hi Dianne. Sorry to hear that things are not going well for you. Being able to work with this is an individual thing and will all depend on the severity of your symptoms and the work that you do.
I was unable to continue working. It wasn't something that I had to "decide" on. I literally could not do it. The symptoms just got bad enough that I could no longer function in my job. I was told to take a leave of absence but I chose to go ahead and quit my job. I didn't want the additional pressure of wondering if and when I would be able to go back. Luckily, I was in a situation that my salary would be missed but would not devastate the family.
Some people are able to continue working but it can be very difficult. It really is an individual thing with lots of determining factors. Do you have disability with your employer? You might consider taking short-term disability if you do. I didn't have that option as I knew that "I would never need it." Boy, what a surprise!

Shirley in Arkansas where it is pouring rain again.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Questions from NC --- dianne beavers
Posted by Pippa , Mar 19,2002,17:47 Top of Thread Archive
I too work in a school and I am on paid sick leave here. but i have had an appointmnt with the Occupational Health Nurse and she has suggested putting me forward for early retirement due to ill health. Now I know i may have problems getting that,but I m just like you with the driving and lights and to be honest i am so much better when i am at home without that added stress. So I am agreeing to it,but know that whether i get it or not I cnnot cope with both job and home. Or rather, i cannot cope with a job. I am much better/healthier being at home as i don't have the triggers here that exacerbate it, and that makes me a happier person too. i would be so miserable at work. i don't feel guilty. I also feel I want, and need, the time, my time, to watch the flowers grow etc while i can.
Pippa, enjoying the perks of Blepharospasm...????!!!



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Re: Questions from NC --- Pippa
Posted by Sally - in - Idaho , Mar 19,2002,20:32 Top of Thread Archive
Good attitude, Pippa! We all need to take time (without feeling guilty) to watch and smell the roses.

Sally in drizzly North Idaho, where it may turn to snow by morning. But SPRING is supposed to come on Friday, with temps in the 50s from then on.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Questions from NC --- dianne beavers
Posted by Kelly Saffell , Mar 19,2002,21:51 Top of Thread Archive
I too took "early retirement" at age 30 because of beb/meige. I first went on short term disability, then transfered to long term and just had my social security approved in Dec. I was a CPA for 9 years and just couldn't do it anymore. While life is FAR from perfect, I do alot better at home minimizing my stress, driving time, reading/computer time, etc. Taking care of 2 small children is stress enough.

The symptoms you described sound like the early stages of meige. I clench my jaw and receive botox in the muscles to help it relax. My throat and nose spasm and sometimes my throat gets very tight, making it hard to breath and talk.

Kelly in Dallas being carried away by rain! Why do we bother with spring soccer season?




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Questions from NC

Re : Questions from NC --- dianne beavers
Posted by Delaine Inman , Mar 19,2002,22:39 Top of Thread Archive
I was working as an RN in Cardiac Rehab inpatient and outpatient teaching and monitoring of patients as they exercised and teaching stress management and healthy lifestyle classes. My worst symptoms started in Jan. of 1999 and May 11th I could not drive to work and couldn't do my job anymore. I took 30 days family medical leave which made me eligible for short term and then long term disability. Social Security was filed in Nov. and started in Jan. retroactive to Nov. and I was declared disabled since May of 1999. So mine went like clock work without loss of wages. I had 3 weeks vacation and sick time which I used for family medical leave so I only missed one week of pay during the 30 days. I had to go to the 3rd doctor to find one who agreed I deserved disability and would help me. The hospital kept me on Medical Leave for one year and let me keep my insurance for a price that wasn't too bad. After one year of not being able to return to work, I was terminated and fortunately my husband already had me on his medical plan. Cobra Insurance was going to be very expensive. I can't imagine trying to work and deal with the up and down symptoms of this condition. It takes all my strength to do what I have to do and sometimes I can't do that very well. Good luck to you.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile