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.....

In Defense Of Teddy Bears

  You can hide your face in his fur and cry and it will soak up your tears.

If something hurts you can squeeze him as hard as you need to and you won't hurt him ....In fact he will still be smiling.

He is there for hugging.

If he has made you feel a little happier...or calmer...you will find him well worth his price.

He is much safer than an anti-depressant or any sort of drug.

You really ought to try it.

If you insist on casting a frown on this furry fellow I say to you....poo,poo.

Beautiful Joe

I recently read the book... Beautiful Joe by Marshall Saunders , and now it is a favorite!

This book is the autobiography of a dog called Joe, he was rescued by a young boy ( an evil man cut his ears off right to the scalp, and cut his tail off  in a fit of rage )and is brought to live with a family where he very much becomes Miss Laura's dog.

While he has many adventures including saving a family from a bad robber who is planning to burn down the house, the main purpose of the book is how one ought to be kind to animals .

The book is rather old...I am not sure when it was originally published and the people often talk of poor dumb animals but I do not think it was meant to mean foolish or stupid it simply means that when cruelty befalls an animal they are unable to speak of it.

Part of this books goes into whether animals go to heaven or not and it goes into things that are not at all Biblical and it clearly states them as legends...Such as when Adam was thrown out of Eden the only animal that would be his friend was a dog.  If a young kid reads it you might want to make sure they know what is not biblical.

" Boys and Girls , be kind to dumb animals, not only because you will loose nothing by it, but because you ought to; for they were placed on the earth by the same kind Hand that made all living creatures." - Beautiful Joe

If you are fond of.... The Five Little Pepper books , Martha Finley, Black Beauty or Hesba Stretton you will much enjoy Beautiful Joe.

A wonderful book !

This Week Has To Be Better...

  Last week there were some really good days.....but also some really rough days.

 Ups and downs.

On one particularly rough day I got a surprise in the mail, a beautiful flower crown and nice card.
 That helped....it was from someone I never even met!

Monday I had a doctors appointment and an i.v.

That went fine.....It was good to see my friends and I was given multiple hugs.

I could go into detail about the bad days, but it is not something to tell the world about.

I also got to see some friends Saturday ....which was wonderful.

Today I had another friend stop by and I think my sister is coming over.

So far this week has been better .

So much better!

Pencil Drawings

What Iost in January....

I had a cross necklace with a little gold heart around the middle that I wore a lot, my Grandpa gave it to me as a gift.......well I lost it someplace when I got shipped off to the University of Maryland Hospital, probably got ripped off in the ambulance or something.

I think this was a very bad omen ....very bad days followed.

But though I did loose my cross, I did not loose my faith.

I did feel a deep sense of hopelessness ....I guess for a time I lost my hope, in a way..... It seemed like the best thing that could happen would be if God would call me home.

I lost hope in my future earthy life.

To be honest my prayers changed from for God to heal me, to for God to please PLEASE call me home.

But it wasn't time for God to call me home, and things got better....eventually .

I prayed a lot during that time, and I knew God listened.

God also knew best.

How can you loose hope and still have faith?  It is hard for me to explain...perhaps  my faith was lacking or weak.

I think most people will understand what I am trying to say.  I lost hope in some ways but still had it in others.

Some of you will not understand what I am trying to say, but that is o.k. .... you will understand at least that we humans fall short ...we are sinners and we are far from perfect. 

My Lady Of The Sea

 This is my lady of the sea or rather she is the sea...the sea and she are one.

I have been working on her husband...a ship got caught in his vast beard.  Stories have be brewing in my mind about them, not sure I will ever write them all out but if a picture is worth a thousand words I guess I have made progress.

Things have been rough...my eyes decided to go crazy , the pupils getting huge and not wanting to respond. Yesterday it did not happen though so I am very glad.
Been very exhausted, lots of spells or...whatever you wish to call them.
Also have been having trouble sitting as it feels like something is pulling me over.
 I am a bit like the lady of the sea ...perhaps I haven't really got legs at all they are really a great mass of seaweed twisting and writhing about.

The kind words and the prayers of friends has been very much appreciated.