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Old 09-03-2002, 04:41 PM   #1
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Unhappy losing all hope

I am sorry to bring a miserable message to the board, but I don't know what to do. I am so confused and frustrated with my life. I am very lucky that I have a wonderful partner who supports me through it all. We are hoping to start a family soon, but my fits are so uncontrolled and I don't get a warning that my Epileptologist thinks I should wait. I am 28 and I know I have a while but how long should I put my life on hold?, what if I never get controlled?. I am just so full of uncertainty, I don't know hwere my life is heading. I just lost my job because I have been off sick for 3 months. I was medically retired, I mean 28 and medically retired!!. Oh I pray every night that things will get better, do you think that is selfish and that is why it never works. I am just boring myself now.
However reads this ( if anyone) thanks for letting me sound off. Any words of encouragement would be sooo appreciated.
Love lulabell

 
Old 09-03-2002, 06:57 PM   #2
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Hey Lulabell,
I am sorry to hear that things are so difficult for you. I guess we all go through our blue periods. Sounds like things are pretty rough in your life. I wish I could say something that would cheer you, but I can't. I can only send you my best wishes and give you an "E" hug. I will pray for you. Kathy
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Old 09-03-2002, 07:19 PM   #3
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Lulabell, I am very glad that you do have a partner to help you through this. Even though you are feeling the negative now, to have someone who you know is willing to be supportive is such a blessing. I do't know hpw things are in England if you are Medically retired from one job. Does that mean you are never allowed to work again at all or is the Medical Retirement only regarding your last place of employment? I also wonder if that is the same as Disability in the US. I'd like to know just what it means to be Medically Retired in England. What I was thinkng is that if it pretains only to one company, then would you be able to go back to work at another place provided your seizures did not interfere? I know that in the US, if this is like our Disability, people do go back to work after receiving disability. Some don't, but some do. I know of people who have done so. I also wonder what type of seizures you are having and what meds you are on. Since you are stil having seizures, obviously the med is not working. Another thing, here women do start families while on meds and with seizures not totally controlled. It all is very dependant on the entire picture such as the severity of your seizures and the meds you are on. Please post this info here re your meds and seizures. That way, those who have experienced the same as you will be more able to offer assistance. Keep us posted. Tattoo

 
Old 09-04-2002, 03:36 AM   #4
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Hi Lulabelle,

So sorry to hear that things are so rough for you right now. Just wanted to let you know that you're in my thoughts and prayers.

Take care.

http://www.healthboards.com/ubb/heart.gif Nic

 
Old 09-04-2002, 08:29 PM   #5
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Hello, Lulabell,

Sorry to meet under such stressful circumstances, but know that venting is one of the best things about this board. There is always someone here to listen, offer prayers or simply an 'e-shoulder' to cry on. You say that you want to have children. Don't be in too much of a hurry. Allow yourself time to physically and emotionally get under control. You are very stressed right now and we all know the effects of stress. You have a partner that you can lean on; talk and share. Meanwhile, know that we are here for you


 
Old 09-08-2002, 09:36 PM   #6
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How are ya Lulabell?
Hope all is well. Please let us know! http://www.healthboards.com/ubb/dance.gif Kathy
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Old 09-09-2002, 03:08 AM   #7
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Hi there,

I just got out of hospital after having another MRI and ambulatory EEG. I am feeling okay though, just sleepy. I hope things pick up soon. I keep saying my prayers!.


Speak to you all soon.
Take care
Lulabell

 
Old 09-09-2002, 08:24 PM   #8
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Hi Lulabell,
Glad you're o.k. Rest up, and let us know the results of your tests when you feel ready. Hugs, Kathy
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Old 09-24-2002, 11:17 AM   #9
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Lulabell

I have had this since I was a kid and it wasn't until I had a Grand Mal In my friends car (knocking out the door panel) that I found out I had Epilepsy. I got on medication, tried to change jobs and get an education in electronics only to have the school I attended go under while I was going there. My medication floored me, and the house could have been falling down around me and I wouldn't have cared! I was dizzy, and my teeth started falling out.

So one day, I decided I would rather have the auras tap me on the shoulder once in awhile than the side effects of the medication all the time. But I found if I get enough sleep, and eat right, I can get by without medication. I am one of the lucky ones I know because I can get away with it, many can't.

I do know you can't let this thing whip you. You can't stop being human because you have seasures! It is too high a price to pay to stop living because of a few stray electrical impulses. You must look at the people around you and know thier love for you will get you through this. I have three grandchildren now 15 years after being diagnosed with a seasure disorder. I get up every day and go to work, and I haven't let anyone know I have it except a select few. You may have to become self employed in the future.

Sit down and make a list of things you like about yourself, and see that you aren't finished yet. Make a list of the reasons you love your husband and why you should have children together. I know the way seems unclear now, but when I get sad, I rent a movie named "Wit". It helps me understand there are so many worse off than me. So I insist on having as normal a life as possible. Have children, they will give you even more reasons to live. Love yourself a little more. Do some of the things you never had time for, I never had time to write music until I was forced to stop being a workaholic by my condition.

Being an Epileptic is like being in a Lodge. There is this secret that only we the members can understand and to the rest of the world it remains a mystery. You must find "fellowship" with others that have the same problem and lean on them. To say my wife has been a blessing to me through this is the understatment of the age. I cannot tell you how important your husband will be to you in coming years.

Just remember this, not all doctors made straight "A's" some passed with "C's". They don't know everything, just a little about one thing. If my life were to end today, I may have to answer to God for doing things the Doctors told me not to do. You see, I drive a truck for a living and I'm not supposed to. But I am medication free and have been seasure free for years...like I say, I'm lucky. But if I had done what every Doctor advised me to do, I'd be sitting, staring out a window, waiting for whatever. Live this life, it is the only one you've got.

caffeinedream

 
Old 09-24-2002, 03:56 PM   #10
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LulaBell, You may have already done so, but if you haven't watched the webcast of the TV Show on Epilepsy n the thread below, Epilepsy on TV, please do. It discusses pregnancy and epilepsy. You can watch and listen to it from your computer. You said your doc suggests that you wait. Wait for what? Does he plan to have your seizures totally stopped at a certain point? Does he even have a plan of care that he expects will work so that you will still be of child bearing age when it is put in action? When he says you should wait, wait for what to happen? Tattoo

 
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