Words,Truth,Nervousness.......

 Before you read this ....it has some really personal stuff, stuff I was not going to put on the internet but I feel like it is a very big part of my frustrations and ...you don't have to read this unless you want to.

 I have had a really bad cold for awhile...thankfully it is getting better.

Colds or any kind of sickness really drains me.

I had an appointment to see the Dystonia doctor this week and I was far more nervous than usual...sometimes I am not nervous at all , I just go see a doctor and don't really think much about it.

My parents and I left the day before and stayed with some friends because the appointment was the next morning and we live a ways away.  This was a very good thing...because I had a lot of laughs that evening and being with friends always helps.

Anyway...the appointment was o.k. , The Dr. wants me to have a genetic test to see if I have one of the two most common Dystonia genes....why?

Because this would mean if I had one of the genes I could have brain surgery.

If  I don't then he would just  treat  the symptoms ...botox, drugs, that sort of stuff...but botox cannot fix my back anyway. ( I am pretty crooked if you don't know)

Yes I got worse.  I get to stop the levadopa and try some other drug.

Drugs..Drugs...Drugs........I guess I could always "Just Say No!"

Well I am going to try the new drug...if it helps it would be good, I am just worried about the side effects.

Anyway....I have been having a ridiculous time keeping my weight on, yes it has pretty much always been a problem. 

Part of the Dr.s plan was encourage eating....I eat! I am so frustrated....I have even had doctors say they didn't believe me when I told them everything I ate the day before.  

The reason I was so nervous....some of the stuff in my records is not the truth and It bothers me very much.  

I have had a doctor say I was self- injurious after I had one of my seizure-like events and fell through a glass coffee table and had to get stitches....he said since my seizures were non- epileptic I did it on purpose.   I most certainly did not!   I am out when they happen...I don't plan them it just happens.

The Dystonia Dr. said the seizure -like things are something we don't understand....I don't understand it either. I am glad he said that and didn't just say I was crazy.

But that isn't the only thing that bothers me..... there is something from the University of Maryland that says I did chest binding! ........why do I even care? 

Well somethings about me are a bit different than many people my age...I don't have a period (but I have breasts...I am small but everything about me is.)...yes I even had a doctor say I made myself that way also!  I don't even know how a person could do that.

I did not make myself this way...God did.

I guess I was worried the Dr.would not give me a chance , that he would just say I was crazy and that would be that.

I always wanted to be a Mommy when I grew up....I guess that is why these things are especially painful to me.

Also.....I don't want to hurt myself...I just fall down and stuff happens.

I don't know why God allowed all this stuff...I just don't understand.

Truman Capote said something like he did not care what people said about him as long as it wasn't true.

Well....I am not him, I care and it is exceedingly upsetting to me.

The only way I calm myself down is I keep telling myself over and over that God knows what it true, God is stronger than man even if they have a white coat and God has a plan.

The truth is out there.
Frustrations...Frustrations.....

Distonia Doc

 Some of yous know that I have been having a rough time ...well I wasn't scheduled to see the Distonia Doc  until September but they had a cancellation which rarely happens so I got to go yesterday.

The appointment went well and it seemed clear that I have some sort of distonia so clear in fact that the doctor thought I was one of the other doctors patients.

Anyway , the doctor did not know what kind I have for sure, but he has some ideas. I will probably need more testing and genetic testing.

Right now I am trying some different stuff with the Ldopa to see if it does anything.

And....go from there.



     The below drawing is my response to all the meanness that was going on my friends facebook pages this week. 

   Some happy pandas enjoying the rain.

 More glowing daisies.

Also I would like to say thank you for all the prayers , It means so much and the cards I got this week....I have been sad and it makes a really big difference. I feel so much love , if love could cure a person I would be beyond cured I would be wonder woman!

Holes In The Day

 Since last Tuesday things have been pretty rough.
     Lots of seizure like events  (distonic storms?)


Imagine you are talking with someone and all of a sudden you went forward into the future , maybe they quit talking to you maybe they are not even sitting by you anymore.

Now imagine this happening fifty times.....a big chunk of you day just went bye-bye.

Most people don't black out but I do...I have been told maybe I pinch something off in my neck.

So...the Ldopa was increased so has the nausea.

I did not think I could stand it if I went backwards....but I am not God and for some reason it happened.

Yesterday I went to the lake with family and friends. I still enjoyed the day , I just wish it wasn't full of holes.

Trusting is God is what I must do ....and pray.
I can do no other.....
So help me God.