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.
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Sunday, May 3, 2015
Tuesday, March 11, 2014
A Missing Piece Of The Puzzle Of My Affliction Found???
My Mom looked up some of my worsening symptoms that have happened since I got off the Valproic Acid.
Some things got A LOT worse ...to be completely honest things did not really get better .
One of the worse things was tongue spasms. It had gotten quite bad and it usually happened many times in the day and lasted a half of an hour most times.
I pretty much have been eating one meal a day because of it.
I was hoping it would go away but it got worse so I came to the conclusion that I'd better tell my parents.
I have a habit of waiting as long as I can hide it, or until I know I can't stand it much longer.
Maybe not the best habit, but I don't want to be going to the doctor for everything.
Anyway have you ever heard of Dystonia ???
Well it can mimic seizures and the way my legs are it appears that I have it.
Anyway Mommy took me to the Dr. yesterday ...they said I would have to wait until Friday but someone canceled and I went.
He said by the way I walk and my tongue and how my neck goes when I have a seizure like event...it seemed like a very strong possibility.
He prescribed me a drug called L dopa or something..and some muscle relaxing pills to take before I go to sleep or when needed.
Well guess what?? I took the L dopa stuff as soon as I came home and I only had 3 seizure things after I took it and zero tongue spasms!
Today my leg is not turning in so hard as normal and it was not hard at all to get in the brace.
The only thing about Dystonia I don't completely fit is that I lose consciousness when a seizure thing happens...But I could very well be pinching something in my neck when it happens. My neck is a bit messed up and I have had a chiropractor work on it before.
Mommy found out about Dystonia, on the internet.!!
the Dr. is trying to get me in NIH..it will be awhile until I get in there.
I am hoping this is it and a big chunk of the mystery has been solved.
I will see how I do today.
Some things got A LOT worse ...to be completely honest things did not really get better .
One of the worse things was tongue spasms. It had gotten quite bad and it usually happened many times in the day and lasted a half of an hour most times.
I pretty much have been eating one meal a day because of it.
I was hoping it would go away but it got worse so I came to the conclusion that I'd better tell my parents.
I have a habit of waiting as long as I can hide it, or until I know I can't stand it much longer.
Maybe not the best habit, but I don't want to be going to the doctor for everything.
Anyway have you ever heard of Dystonia ???
Well it can mimic seizures and the way my legs are it appears that I have it.
Anyway Mommy took me to the Dr. yesterday ...they said I would have to wait until Friday but someone canceled and I went.
He said by the way I walk and my tongue and how my neck goes when I have a seizure like event...it seemed like a very strong possibility.
He prescribed me a drug called L dopa or something..and some muscle relaxing pills to take before I go to sleep or when needed.
Well guess what?? I took the L dopa stuff as soon as I came home and I only had 3 seizure things after I took it and zero tongue spasms!
Today my leg is not turning in so hard as normal and it was not hard at all to get in the brace.
The only thing about Dystonia I don't completely fit is that I lose consciousness when a seizure thing happens...But I could very well be pinching something in my neck when it happens. My neck is a bit messed up and I have had a chiropractor work on it before.
Mommy found out about Dystonia, on the internet.!!
the Dr. is trying to get me in NIH..it will be awhile until I get in there.
I am hoping this is it and a big chunk of the mystery has been solved.
I will see how I do today.
Thursday, February 6, 2014
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.
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.
Tuesday, September 10, 2013
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.
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.
Saturday, August 10, 2013
A Book I Wrote
If you see a girl or a boy having a seizure, do not hold them down or try to force them to stop. Do not put things in their mouth. If they fall someplace dangerous or are standing someplace dangerous ( like a road) tell a grown up (if you are a kid).
You should tell a grown up anyway , even if it didn't happen in a dangerous place.
Sincerely, Jessica
Wednesday, August 7, 2013
What It Is Like and How It Is
Imagine every day ..for years
you have seizures without any free days.
You are tired ...and confused.
You miss sections of conversation, sections of life.
It is a bit like time travel.
You end up minutes into the future.
The minutes add up.
How many hours do you miss in a year?
Days...Weeks...a Month????
It is how it is.
You are a time traveler...for real.
All those folks who told you there is no such thing as time travel.... they are bloody wrong!!
you have seizures without any free days.
You are tired ...and confused.
You miss sections of conversation, sections of life.
It is a bit like time travel.
You end up minutes into the future.
The minutes add up.
How many hours do you miss in a year?
Days...Weeks...a Month????
It is how it is.
You are a time traveler...for real.
All those folks who told you there is no such thing as time travel.... they are bloody wrong!!
Monday, July 22, 2013
Party In The I.v. Room and Other Happenings
Today I had to see the doctor. I guess I'll be trying Lamictal .
After that I had i.v. , my friend the lady with the red bag was there and someone new............Mike.
Mike saw my leg brace and he used to have one too, he had to have it for years but he doesn't need it now. That made me happy, he doesn't need it now...and sad, he had it for years.
Mike doesn't have a gallbladder either.
Mike eats similar foods as me.
He was very nice and told me a joke.
He wore my helmet some, and asked if it suited him ...I said maybe if it had a different colored flower on it. He said if it had cauliflower on it!!! I said I thought broccoli would suit him best , " Good, that's my favorite, said he".
We laughed and laughed.
One of the nurses said it sounded like a party in there . ( That's because we made it one)
Mike doesn't have seizures.. he has cancer.
Afterwards Mommy took me to the store so I could get some new shoes, I needed some for fall and since I have to get 2 different sizes I thought I had better get them early before sizes sell out. Well we found one that fit the brace and one that fit the other foot but they were not the same style, I was disappointed.
Then later a person that worked there asked me if I found what I needed and I told her my tale of shoes and she and another lady found me what I needed!!
Hooray for Wal-Mart !!! When you need to buy two sizes without going broke it works.
Kids sizes always seem to have less selection , and when your in your 20s it can be rather frustrating.
Sunday I made it to church and had lunch with Grandpa!!
Afterwards rubber band man came!! He used to be a postman and he goes around shooting people with rubber bands and giving them rubber bands so they can spread the love. The first time I met him I was afraid of him because he shot rubber bands at me through the open can window when I was ten and I was setting in there waiting for my Dad and rubber band man said to let him in!!!!! No way was I letting a strange rubber band shooting fellow into the car when my dad was in the store. It turned out he knew my dad.
Last summer we became friends again at my cousins wedding.
Saturday my dad took me to a concert and Grandpa came.
I really enjoyed it , I had lots of seizures and that was not so good.
A man came up to my dad and told him that he really should give me some cannabis, that he didn't smoke it when he was a kid and that he really missed out and he had a friend that has seizures and it helped him. ( slightly surprising since it wasn't that kind of concert, or place ...I mean I think the place was even a tobacco free school zone!!)
Anyway I wish it was legal for everyone...............I wish.
After that I had i.v. , my friend the lady with the red bag was there and someone new............Mike.
Mike saw my leg brace and he used to have one too, he had to have it for years but he doesn't need it now. That made me happy, he doesn't need it now...and sad, he had it for years.
Mike doesn't have a gallbladder either.
Mike eats similar foods as me.
He was very nice and told me a joke.
He wore my helmet some, and asked if it suited him ...I said maybe if it had a different colored flower on it. He said if it had cauliflower on it!!! I said I thought broccoli would suit him best , " Good, that's my favorite, said he".
We laughed and laughed.
One of the nurses said it sounded like a party in there . ( That's because we made it one)
Mike doesn't have seizures.. he has cancer.
Afterwards Mommy took me to the store so I could get some new shoes, I needed some for fall and since I have to get 2 different sizes I thought I had better get them early before sizes sell out. Well we found one that fit the brace and one that fit the other foot but they were not the same style, I was disappointed.
Then later a person that worked there asked me if I found what I needed and I told her my tale of shoes and she and another lady found me what I needed!!
Hooray for Wal-Mart !!! When you need to buy two sizes without going broke it works.
Kids sizes always seem to have less selection , and when your in your 20s it can be rather frustrating.
Sunday I made it to church and had lunch with Grandpa!!
Afterwards rubber band man came!! He used to be a postman and he goes around shooting people with rubber bands and giving them rubber bands so they can spread the love. The first time I met him I was afraid of him because he shot rubber bands at me through the open can window when I was ten and I was setting in there waiting for my Dad and rubber band man said to let him in!!!!! No way was I letting a strange rubber band shooting fellow into the car when my dad was in the store. It turned out he knew my dad.
Last summer we became friends again at my cousins wedding.
Saturday my dad took me to a concert and Grandpa came.
I really enjoyed it , I had lots of seizures and that was not so good.
A man came up to my dad and told him that he really should give me some cannabis, that he didn't smoke it when he was a kid and that he really missed out and he had a friend that has seizures and it helped him. ( slightly surprising since it wasn't that kind of concert, or place ...I mean I think the place was even a tobacco free school zone!!)
Anyway I wish it was legal for everyone...............I wish.
Friday, July 19, 2013
Friends Can Be Found
Yesterday Daddy took me to a jazz concert and then afterwards we went to eat at Dante's. The concert was wonderful but so was what happened after dinner.
My Dad was taking to two young guys and I had a seizure ( They happen a lot in the evening) The two guys got silent and starred at me ( so I am told) . Daddy said I wasn't really o.k. but that it was my normal, the guys then told Daddy that their Mom has epilepsy and the rough times she went through.
The guys understood......my life.
Later Daddy went to get me some juice and I stayed and talked to the guys.
The one guy said that he wished there was some sort of technology to fix all my problems and then he said if only we could rid you of those God d@$%^# f#$%^&* seizures!
Well you know what? I rather liked those cuss words. ( I smiled)
Those guys told me I wasn't alone in what I was going through and that they did not believe in social barriers.
One day , they said, I shall kick epilepsy's d@%^#8 @$$.
They got silent when Daddy came back, probably because they were saying bad words, but somehow that didn't bother me at all.
I like those guys.
My Dad was taking to two young guys and I had a seizure ( They happen a lot in the evening) The two guys got silent and starred at me ( so I am told) . Daddy said I wasn't really o.k. but that it was my normal, the guys then told Daddy that their Mom has epilepsy and the rough times she went through.
The guys understood......my life.
Later Daddy went to get me some juice and I stayed and talked to the guys.
The one guy said that he wished there was some sort of technology to fix all my problems and then he said if only we could rid you of those God d@$%^# f#$%^&* seizures!
Well you know what? I rather liked those cuss words. ( I smiled)
Those guys told me I wasn't alone in what I was going through and that they did not believe in social barriers.
One day , they said, I shall kick epilepsy's d@%^#8 @$$.
They got silent when Daddy came back, probably because they were saying bad words, but somehow that didn't bother me at all.
I like those guys.
Friday, July 12, 2013
A Calender Hangs In My Room... ( I wrote this like a month ago)
It is filled with numbers.
The numbers are not the days.
The numbers are the seizures.
Daddy sneaks in and looks at those numbers,
They make him sad......and somehow that makes everything seem worse.
The thing about those numbers though....the count is sometimes lost.
The thing about that calendar is it came from p.t.
It is not all bad....good thing are on there too.
My sister will get married.
Daddy took me to Dante's a few times.
I am sure more dates will go on there,
But at the end of the day there are still those numbers.
If those numbers would go away for just one day what would I do?
I would run into the deep woods and roll in the ferns because I miss the green smell they have.
I would ride my dusty bike.
Maybe I would go swimming .
If it was winter I would be outside skiing all day.
Maybe I would stand on the cliffs of Backbone Mountain.
But not today. I did not even go to church.
The numbers are not the days.
The numbers are the seizures.
Daddy sneaks in and looks at those numbers,
They make him sad......and somehow that makes everything seem worse.
The thing about those numbers though....the count is sometimes lost.
The thing about that calendar is it came from p.t.
It is not all bad....good thing are on there too.
My sister will get married.
Daddy took me to Dante's a few times.
I am sure more dates will go on there,
But at the end of the day there are still those numbers.
If those numbers would go away for just one day what would I do?
I would run into the deep woods and roll in the ferns because I miss the green smell they have.
I would ride my dusty bike.
Maybe I would go swimming .
If it was winter I would be outside skiing all day.
Maybe I would stand on the cliffs of Backbone Mountain.
But not today. I did not even go to church.
Wednesday, July 3, 2013
New Glasses, Family Reunion, And The Reason Why I Don't Sleep Very Well....
My new glasses came yesterday and I am glad..my left eye was far blurrier than I thought, now it is so much better. The eye doctor really should of left the right side alone however, I am deciding whether to send the glasses back or not.
I got to go to the reunion yesterday and I fell asleep, I guess I was having seizures . No wonder why I get so exhausted. They get me while I sleep too. I 'm not going to talk about it anymore right now.
The reunion is days not just a day I have missed a day but was glad I went yesterday. My youngest cousin is super tall like six feet !!!!! I feel even smaller now. We talked about true love and stories that really ought to be on This American Life, school and what alternative school is like ( prison basically), and how I was....all I say is o.k.
Sometimes I am not o.k. but I lie.
Oh yes, I am planning to enter the Easter Seals art contest.
I got to go to the reunion yesterday and I fell asleep, I guess I was having seizures . No wonder why I get so exhausted. They get me while I sleep too. I 'm not going to talk about it anymore right now.
The reunion is days not just a day I have missed a day but was glad I went yesterday. My youngest cousin is super tall like six feet !!!!! I feel even smaller now. We talked about true love and stories that really ought to be on This American Life, school and what alternative school is like ( prison basically), and how I was....all I say is o.k.
Sometimes I am not o.k. but I lie.
Oh yes, I am planning to enter the Easter Seals art contest.
Tuesday, June 25, 2013
The Man With The Staple Gun
As I set getting an I.V. , a man with a staple gun sat across from me.
Mommy left for a minute or so.
I had a seizure.
When I came back the man with the staple gun stapled 20 pounds of advice papers to my chest.
Mommy came back and the man pointed to what he had done and said, " she needs that."
Mommy said, " well I don't know about that but my daughter needs to breathe , thats for sure".
Mommy tore the 20 pounds of advice off my chest, and I felt much better as I could then breathe.
I had become nearly purple.
As we left Mommy turns to the staple gun man and says, " We do the best we can",
We went home.
Mommy left for a minute or so.
I had a seizure.
When I came back the man with the staple gun stapled 20 pounds of advice papers to my chest.
Mommy came back and the man pointed to what he had done and said, " she needs that."
Mommy said, " well I don't know about that but my daughter needs to breathe , thats for sure".
Mommy tore the 20 pounds of advice off my chest, and I felt much better as I could then breathe.
I had become nearly purple.
As we left Mommy turns to the staple gun man and says, " We do the best we can",
We went home.
Wednesday, May 1, 2013
Yesterday was a Very Rough Day.
You would think it would of been better since I had i.v. on Monday but it was not I felt really really bad. I was still sick, and on top of that I blacked out , or had a seizure or something and hit my head hard on the bathroom mirror. It was after my shower and I was trying to get dressed , so I was not wearing my helmet. I got a headache. I was exhausted and fell asleep until 6:00 p.m. I did not tell anyone I hit my head. What good would it of done? Whenever I get a stomach bug they want to live in me forever . It has been over 2 weeks. I hope today will be better and I will be able to eat some. I have only been awake one hour and I already want to go to sleep again. Blah. Shasta threw up on my parents bed. I think she got sick from me.
Monday, April 15, 2013
Amazing Wonderful News!!!!
As some of you know my family has been renting a hyperbaric chamber for me to use. Anyway I have rather liked it after my wonderful skilled Mommy figured out how to slowly up the pressure for me so it would not hurt my ears so much. Well , I have been doing it every day like I was told to and MY SEIZURES HAVE BEEN A LITTLE SHORTER!!!! :) I still have been having the same amount but I am so glad something positive has happened , maybe they will get shorter and shorter and then go away and never ever come again . I am excited....... Hope!!!
Monday, April 8, 2013
I.V. And Bad Stuff And What Is On My Mind
My good vein is finally back to normal, however it has been getting poked normally weekly for the past four years and this year twice a week and its getting used too much. I also have noticed that my legs and arms are rather puffy afterwards and it take two days for my weight to go back down to normal...when you do not even weigh 90 pounds you find the normal dose of stuff is too much. Also my seizures are not responding as much as they used too, they still are responding but not as much. One thing that's really getting me down is friends dying and ....I am just sad about it. Part of life is death because of the fall of man. How could Eve do such a thing????? Eve, did you not think? Adam you were not very bright either........I hate you both. The thing about all this that really is sickening is we ALL sin like Adam and Eve. I guess what I am trying to say is I HATE SIN ,I HATE DEATH!!! Some days I feel as though I have a thousand sorrows but the reality is I have millions of things to be happy about and I really ought to be full of hope and joy......I fail, I sin, I am human. Yes , I WANT TO SAY BAD WORDS!!! I need to seek peace though....there is a reason for everything and I believe it. Basically that is what is on my mind and I had to get it out.
Tuesday, March 12, 2013
Big Foot and Little Foot
My sister is most likely getting married this fall and I was asked to be the maid of honor :) My other sister was asked to be a bridesmaid also! The really silly thing is if my sister wants us to have a particular sort of shoes it will be a challenge. I have to shop in the children's section because I wear size 1 or 2 on one foot and the braced one is a 4 or 5 ( I am sure my sister will want my feet to match at least). The other sister wears size 12 in woman's ...most stores do not even carry that size. We are like opposites!!
I sure hope my sister will not be too picky. If she is I guess I will not wear my brace and have the same sized shoes and use my wheelchair, she wants to get married in the evening and I have a heap of seizures then anyway. I cannot be standing, She knows this. Maybe by then I will be cured......that almost seems impossible it has been so many years.
I still have hope , someone told me I was being a goof but I think I have to have that hope right now.
I sure hope my sister will not be too picky. If she is I guess I will not wear my brace and have the same sized shoes and use my wheelchair, she wants to get married in the evening and I have a heap of seizures then anyway. I cannot be standing, She knows this. Maybe by then I will be cured......that almost seems impossible it has been so many years.
I still have hope , someone told me I was being a goof but I think I have to have that hope right now.
Monday, March 4, 2013
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.
Seizureland is purgatory..........strictly metaphorically speaking.
Friday, February 22, 2013
Have Not Had a Good Day, But it Was Not Bad .
Have had more seizures than normal after I.v. , but not awful. Thats all I have to say about that.
Saturday, February 2, 2013
Excitement, Disappointments, and Happiness.
On the 31st I got my brace . Oh how excited I was, longing to use my leg again and get rid of the old walker. Well it has a break in period and I have to use the walker still . Poo. I am still so glad I have it now so hopefully I can dance..soon. I had to wait since November for the thing and my leg started not working in September. That is a long time. Anyway I had to get new shoes because the brace is so big . My foot it tiny, ridiculously tiny ...think size 1 tiny. But I am glad it was tiny enough that I could stay in the kids section . Why???? So my shoes match!! If one was woman's and one kids they would not match. Also no dress shoes would work with the brace :( :( :( :( :( (that means sneakers at church). I did get to buy a book I wanted since August and yesterday I got to go to a Jazz Dinner . I almost didn't get to go and I ask to go to it for my birthday and I would of been really sad if Daddy said no. Grandpa showed up at our house and said he was going and that saved the day!! A good friend was there , I had a heap of seizures 13, but that's better than 25 or 30.
Saturday, January 26, 2013
Something That is Bothering Me........
Something that has really been bothering me is the fact that my left leg has not been working properly, starting in September. Maybe it is because I have hit my head too many times, maybe I just have too many seizures, I don't really know. I am afraid. I am afraid of what might happen next. I am unhappy I still cannot use my leg. I am supposed to get an AFO Thursday, that has taken months. Everyone thinks I am so brave but I am not nearly as brave as you think I am.
I am really tired of taking my medicine, even though I know I must I still don't like the way it makes me feel. If I quit , like they tried in hospital, I have seizures nearly non stop and since it seemed to take the grandmals away I just cannot stop. But life goes on and I absolutely must continue on and pray that God gives me the grace to continue on and to do so without deep depths of sadness.
I am really tired of taking my medicine, even though I know I must I still don't like the way it makes me feel. If I quit , like they tried in hospital, I have seizures nearly non stop and since it seemed to take the grandmals away I just cannot stop. But life goes on and I absolutely must continue on and pray that God gives me the grace to continue on and to do so without deep depths of sadness.
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