And Now Onfi....

 So now I started a drug called onfi.
I have hope that this will help. ( Cannot tell yet)

Since the last really bad seizure I have not been myself some things really are just difficult.

The past 2 days I had some sort of stomach bug...feeling much better today!

Yesterday evening a movie made me have a seizure but it stopped after 5min .

I am o.k. The thing flashed a lot. A good nights sleep helped.

Thursday was a very long day for me  had an eeg.

People were incredibly kind and friendly at the doctors office and both myself and my Mommy feel as though this place is overflowing with hope.

No one gave me any mean looks.

People were not fearful of me.

The letters, prayers, kind words,  and friendship I have received in the past month or so has meant so much to me.

Peace and love to all of you my friends.

What I NEED You To Understand.....

 I do not will my seizures into being, they happen even when I am asleep.

They hurt me , they make me fall.

I do not want them.

I feel betrayed by my own body.

If  my  subconsciousness  is doing this to me I hope it dies.

If you think I am doing this on purpose put yourself in my place...or at least try,
To loose control of your own body is one of the most frightening things that can happen to a person.

That is what I need you to understand.

Not Good...

 I wasn't feeling too good Monday despite having an i.v. and everything , normally I feel better after I have an i.v.

When I came home this was in the mail....

It made me feel some better, I even laughed, something about that pumpkin's squishy face!

It is always nice to hear from Kathie she is a really nice lady I met on a trip to Florida a few years ago.

Anyway I found out why I felt so bad....grandmals were coming. They have come and gone and I feel worn out and not myself still.

I hope the grandmals don't come back ever.

3 Grandmals = :(

 Three grandmals happened the night before last, well I guess it was in the wee hours of the morning.

I don't remember.

I don't remember much of the doctors appointment yesterday.

Probably a good thing, that I don't remember.

It's been a little over a year since I had grandmals.

Bummer.

What can I say? I want to say a curse word for poop that people say when they are really really mad.

I am just going to say.......POOOOOP!!!!!

I am mad.


Well, hopefully today will be better than yesterday and my leg will cooperate and The grandmals will stay away.

Visiting Purgatory

 Every day for nearly two years now with no day off, I go somewhere.When I go I am not really in my body anymore I am gone, somehow ceasing to exist. I am not really dead. I am not really alive. I cannot see, I cannot hear , I cannot speak. There is no time. It is not heaven, it is not hell.  I am made to visit my own purgatory, seizureland, and I don't want to go there anymore. My existence is simply nothingness there. Do people get stuck there? Will I get stuck there ?

Seizureland is purgatory..........strictly metaphorically speaking.