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    Looking for support
    GailEliza posted:
    Hello, I am new to this site. I have checked out this site before, but now I realise that I cannot find anyone who understands what I have been going through over the years. I am sure many of you do, and I truly need people who "get it" I like many of you was told many years ago (1997) that I "may" have MS. After seeing numerous neurologists, I was finally diagnosed in 2009 with CPS. When I got this news I was shocked (no pun intended) I couldnt believe it!! Everything finally made sense! While I was still working, sometimes while driving, I would have to slap myself in the face to stay awake! Thank GOD I only lived 10 min. from the job! Then I was put on trileptal and literally felt like I was dying. I finally retired in 2012 and then applied for SS Dis. One lady there had the nerve to say to me "Oh and nooooww you want SS?" But, I tried, I really tried to keep going. Do they really think I wanted to cut my income in half? Because of these many years that have passed by, I now have short term memory loss. Now I am at the stage where I need a lawyer, and of course I have been seizing like crazy from the stress (keppra no longer working) I look forward to your support and feedback. Gail
    dancer86442 responded:
    Hello Gail. Welcome back. I completely understand what you mean about the Ignorance of the general Population. A Lot of People are working to Dispel that Ignorance. Should have been a #1 Priority YRS ago.

    I'm glad to hear you Don't have MS. I know a few people who deal w/ both MS & Seizure disorders. I'm glad you finally got the rite answers. But, it sounds like you are ready to try a new med. It's the Pitts, but, oh so necessary. Do you keep a Daily Journal? More Info under Tips.

    As for that Ladies rude comment: Best to just 'Consider the Source' Personally, I have to work another 5 yrs full time (I think) to have enough credits to qualify. I should have filed for Disability back when. But, I figured there were others' who needed it more than I. Now, I am re-married & Hubby has too many assets for me to qualify. .

    I wish you luck w/ SS. Hang in there. A Lawyer will get the job done. Hugs!

    Love Candi
    saxofone1 responded:
    Hi Gail,


    The general opinion of society stinks!!!

    I would like to take their car keys, jobs, etc, and let them make it on what they consider a liveable income. How would they handle all the med changes and seizure activity as well as the discriminations that we face daily?

    Stress and epilepsy simply don't mix. I wish you well with finding a new med. You've come this far so don't give in to dispair. I ridden that rollercoaster since '75.

    Good luck with the lawyer. Hang in there.


    I have been on the med rollercoaster since '75.
    An_250957 responded:
    Hi Gail, I completely understand you, particularly that fancy head gear you have in your photograph. My 48 hour EEG was two weeks ago, all clear but my life feels turned upside down. I just posted as "Frustrated and need answers." About ten years ago my rheumatologist recommended a spinal to check for MS - then she moved out of state, moved back and those records are nowhere to be located. I am off work for the time being and drive an hour each way. There is no way I'll be able to do this unless my symptoms completely stop. I am at the end of my 4th year in a 5 year accelerated MBA, having difficulty reading and comprehending the text, so am concerned my dream of teaching business will not come to light (which would have been perfect as I would teach online college and not have to drive). I am a very upbeat person but this has drastically change me in every way. I'm glad to have you on my side and look forward to your posts.

    saxofone1 responded:
    Hi Gail,

    How are things going for you?

    Drop us a note when you get the chance.

    msreif replied to An_250957's response:
    Hi, Sheri.
    The university you attend should have a dept. to help people with disabilities.
    I can't read, am not organized, sleep a lot and think I may not be asked back to my job as an adjunct nursing professor, due to the disorganization my students reported.
    Wish I would have looked in to help at the university itself.
    Good luck. You can do it!
    hula_dancer73 replied to msreif's response:

    I live in Hawi'i and go to UH and they have a place in the iniversity where students with disabilities can get get help with their problems.

    I have lareay been there and haev at leat 12 accomadations.

    Things got waived, such as open book tests, notes during closed book book tests, tardiness was also waived, when there was a limit of how many days were allowed to be missed in a class, I could miss as many days I needed if I had a sz the day of or night before class, and need the time and couldn't make it to class, allowed to have a note-taker, so I did't really have didn't have to take notes because I could keep up with the teacher, etc. The list goes on.

    You can do it. Yo ujust haveto ask around about it and it is there ever school has have to have one. Lot people have disabilities and need the help.

    At LSU I managed to get 14 accodations.

    They had a room just for people that had propmes like us and had a swipe key that opnly we had and it was really cool.

    Good luck with this,

    They have stuff and you can find it just ask around.

    I live on O'ahu in West Honolulu-GO UH Warriors!

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