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Old 02-12-2011, 10:08 PM
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i know it's needed but really?


i'm almost 17 and have lost alot of independence since epilepsy entered my life. i know i will gain most of it back at some point but really? because i'm being ramped up on lamictal, my mom is sleeping in me bed, that is, until the baby monitor arrives. just lovely. it is only for six weeks until i'm on the full dose but i have no privacy whatsoever. i hope these weeks go by fast. i don't mean to complain but i went from babysitting large groups of kids and working at a preschool to wondering if i will ever work there again and being the one who is babysat. i just wonder how long thins will last.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-12-2011, 10:14 PM
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Umm. Eww.

Hope the baby monitor arrives real soon! Meantime, can you offer to set up a cot (camp bed) or similar in your bedroom and sleep on that, or sleep on the floor, or make some other arrangement? Sorry, but, no...
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Old 02-12-2011, 10:19 PM
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i don't care that she is sleeping in the same bed, that actually doesn't bother me haha my mom and i have a good relationship, i just wish my independence didn't keep floating away everytime i have a seizure or change meds.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-12-2011, 10:54 PM
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Yikes! Shove her out of bed a few times and blame it on a seizure. lol...

I agree with the cot idea. I understand your mom is just trying to take good care of you. I also understand she may be going over the top a bit.

Q: what does she think the baby monitor will do? Do you make lots of noise during your seizures?

Maybe over time she will loosen up a bit. It takes some time to see that you can be independant and safe at the same time.
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Old 02-13-2011, 07:15 AM
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yep i do make alot of noise during seizures. i will only have the baby monitor until i'm up to the full dose. i love my mom, but she snores and i want my room back
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-13-2011, 12:18 PM
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I used to have to keep the door open when I took a shower, and if someone wasn't in the room, had to sit in a chair in case I fell. When I went to the bathroom, someone had to be upstairs with me. For a bit I had the school nurse with me in all of my classes (that was the most embarrasing).

I have a great relationship with my mom. And although embarrasing at the time, I know she was just worried about me getting hurt. It lost so much independence but I did get most-if not all of it back. Hopefully you do to!
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Old 02-13-2011, 12:36 PM
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thanks bee. here's hoping
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-21-2011, 09:25 PM
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I know what you mean. I was in my late 20's and hovered over by my family. No one wanted me to take a shower if I was home alone. I wasn't aloud to cook unless it was something in the microwave and they were even a little leary about that. I couldn't cross the road to get the mail out of the mail box.

If we went to the store, I had to be right there beside them, just like a little kid. If I forgot something in the back of the store when we were at the front I couldn't just go run back and get it, someone had to come with me.

Family would either stay at the house with me until my husband came home from work or they would pretty much stay on the phone with me the entire time.

Things have eased up alot for me. I'm 34 now and some of these condictions still apply, but I've learned to live with most of the protectave things that the family wants to happen.

I don't work but my husband asks that I send him a text message in the morning when I take my meds, just to make sure I didn't sleep through the alarm or have a seizure. This I can deal with, it takes 3 seconds to do. Besides he used to call me at 7am and end up talking to me for an hour. This way I can take the meds, text him and then go back to bed.

I don't know how bad your seizures are but I'm hoping things will get better for you. Once your mother realizes that she's only your mom and not your guardian angel then things might ease up.

Try to find a way to make her happy by doing something you can deal with.
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Old 02-21-2011, 09:59 PM
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thanks valerie, i thought my mom was the only one that extreme. it will take i while i know but i have a feeling i will gain back some of my independence eventually
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-27-2011, 01:46 PM
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I moved out when I was 18. I've had epilepsy since I was ten. You can point things out to her. I have a really good relationship with my mom to. Honesty was one thing we had to work through. My mom was always so opposit. Sometimes we would cry about it together. Then she would tell me to pick up and move on. That is the way life is. Of course with a hug. Now I have a child with epilepsy. My epileptologist told me not to sleep with him. Just check on him. It's hard.And You sound very independant.
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Old 02-27-2011, 01:50 PM
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thanks stilldancing. my mom has stopped and now they have a babymonitor, not that much better but its one step up. i talk to my mom easily but this is stressful on everyone.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 02-27-2011, 04:35 PM
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Mom and I share a common door with a 4 inch gap beneath it. We have hard wood floors
plus the street is near silent, so any odd noises is either one of us. and we can hear each other from both ends of the house.
It makes life interesting.
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Old 02-27-2011, 08:46 PM
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Yea Rose! The step is bigger then you think. I know for me growing up little things were huge!
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Old 02-28-2011, 03:12 AM
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When I


saw that your mom was sleeping in your bed, I thought, UMMMMMM. YUK.

I understood WHY, cuz I AM a mom. But STILL.

However, I'm glad to see that things are easing off, and now you have the baby monitor instead.

Babysteps........and you'll get independence back!
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