Levadopa

 So as some of you know, I started taking Levadopa on Monday . Well it has made quite a bit of difference ....Yesterday I only had 1 seizure thing, the day before 3 , and the day before that 1.

I am finding it hard to believe that this is not just a dream....something that will be gone in the morning as soon as I wake up.

I know it is real though.

I am excited that the seizures will hopefully be gone soon.

I am hopeful that my legs will get better.

These have been the best days in years.

Anyway ....I am curious to see what the psychologist says about me now.

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.

I Don't Want It....

I have been thinking too much lately....

About things I don't want that I have, and things that I cannot do and want to do.

As you probably guessed if you are a human....those thoughts have left me rather unhappy.

Mostly I have been not wanting my extra DNA.  Why??? Because I was told it was abnormal...that they didn't know what it would do or what effect it has.

Some people told me that it is silly to be upset about something like that because it probably does nothing.

Well why the heck would God make such a thing if it did NOTHING??

Some person said it made me their hero, they thought I was really cool like I came from X-men or something.

Now I think that is silly.( but I have to say the thought did make me smile)

Other people said that I should not wish the DNA gone because maybe it is what makes me so creative.

I don't know.

I do know though that God does not make mistakes...He does allow things to happen though.

I know I am going to be miserable if I don't put my trust in Him.

I know I am very bad for hating my body.

I really need to cut it out and trust God.

He made me how I am, He gave me this body.....I know that if I made someone something and they said they did not like it that they HATED it I would be unhappy.

Sometimes I am amazed God does not just burn me up right now... the ungrateful wretch that I am. 

This is about my sixth attempt at writing a new post..I was debating whether to share such thoughts or not.

I have decided to ....I confess my sins to God and to you my friends.
By Gods grace alone I hope I do better.

I Found Out......

I am going to be an Aunt!!!!

My sister is going to have a baby.

I am very happy.

What I Did Last Weekend, And Yesterday....

 Yesterday Daddy brought me to a jazz dinner at Dante's which was amazing...I have to say I really like jazz. I also got to see one of my friends!!

Last weekend I got to go to 2 baby showers!! I got to hold a baby, thus I am very happy.

I was not feeling very good last Sunday and the second one was supposed to happen that evening so I slept in the morning , yeah I missed church but I am friends with the momma ...I felt like I should go no matter what! So I did!

Something really amazing is I won one a prize at the first one and TWO prizes at the second one.  That does not happen much.

Here are some photos of what I made for the babies.

 Everything is recycled..except for the thread. Hey if you do not go shopping that often you get creative, at least I do.

 I used to feel odd giving people my families re-purposed stuff, but one of my friends said he really liked getting stuff from me because it is made out of trash and turned into brilliance.  I had to laugh.

 Also last night we got a very exciting phone call, but I can't tell you about it yet though I want to burst. I am so excited!!  I will tell you asap.

So Often This Happens.....

 I feel like God has forgotten me...as ridiculous as that is, and then I get a letter in the mail that lets me know I am loved and being prayed for.

The timing is rather amazing..It pretty much happens every time the thought crosses my mind.

I know that God will never forsake me, but as a human I think stupid thoughts sometimes.

If God takes care of earthworms...of course He will take care of me.

Duh.

The Dance Of The Orchids

  Very few people have watched the dance of the orchids in real time...I almost feel as though I have looked into a forbidden world that humans were never meant to see.

The dance is quite dramatic, it starts as the bud opens and then the flower twists and turns, they sway to and fro in a figure eight pattern.

These are not mere plants ..they are living creatures who seem to explode with joy when a sunbeam falls across its leaves.

They are not just my pets ...they are sort of, friends.

They sit on my window and dance..not just for me of course, I think they are dancing for God and rejoicing in sunlight and all of creation.

Yes I do watch other flowers dance too..I just find Orchids extraordinary.