And I Don't Know How To Respond To That

 My Dad took the day off of work.....because today I was to see a Neurosurgeon.

Daddy and Mommy both came they both had questions they both had to work together, we were at a hospital I don't like. ( THEY DO NOT LIKE IT EITHER!!!)

It holds many bad memories for me.

I actually felt a little sick.

The lady who brought us back to a exam room took a brief medical history of me looks at me and asked if I ever did walk ....

I say yes, It has been a year since I could but I did.

She looks at my Mom ....who confirms what I said.

Why would I lie???

Some of these people at this hospital think I cannot do things I do or that I did not do the things I one time did, that I never could draw that I color or because I was Home schooled they told me my mother probably knew I could not do real school.

Anyway a wave of emotion hit me when the surgeon looked at my parents and told them I could not have the surgery , I  don't WANT to be cut open.........I just wanted to have more hope.

The issue was with records from that hospital the fact that the surgeon only wants to work with the Neurology department from that hospital, the dude had the records!!!! we drove there for nothing...Daddy lost a days pay.

My parents were hit with more than just a wave of emotion from it all they are desperate to find someone to help me but .......it seems like things are not working out.

There is so much more than just seizures happening , doctors are afraid to touch me, I am not a quick fix.

With that demyeilnating polyneuropothy disease maybe a surgery right now would be bad.

I don't know.

God does.

The day was beautiful.

The sunset was amazing.

It is not all bad .....there is still good.

And I don't know how to respond to all of this.

Why I Took A Break From Blogging

.....Because this year has been one of the roughest ones I have ever known.
Because I ended up in the ICU nearly every month.

Because with each hospital stay I felt like a small piece of myself has slipped away never to return until I shed my earthly skin.

Because my thoughts got scrambled with drugs and my own daydreams were not adventures but just watching light slowly move across the room until the sun set.

I thought bad things.....

.........I thought bad things about a doctor that told me something they did would not hurt at all that I would have a happy little sleep and I woke up in the worst pain I have ever felt ,I was given morphine  and some other drug that mixed with all the other durgs in me gave me a bad trip.

The bad thoughts led to a bad action in my own room at home...2 days ago because I still hurt I flipped the bird at my stomach tube that had a very bad spasm and called the man a bad name.... a name that means you haven't got a Daddy ......well it wasn't that mans fault if he never had a Daddy, I also called him a lair, a dirty snake, and a poopy head.

I never flipped the bird before ever .

No birds did any flips.

My stomach did not stop hurting.

My days have been rough and I don't want to say bad things or be bad....I ask God to make me behave like a Christian....

.....I do know though that you can get angry and not sin because Jesus did, but I am not Jesus and I am a sinner.

I don't want to write a blog full of curses and sin, nor do I wish to make things seem better than they are.

I don't want a pity party either......

But just so you know Gastroparesis and Dystonia and PEG tubes all in one really is awful ....many days everything comes out.....the tube, I smell it..... it grosses ME out it is from my own body.

Without it I would not get the medicine for the seizures or anything.

So....tomorrow I see a Neurosurgeon.

It is about getting a pacemaker type thing to control the seizures called VNS.

My parents and I already met with  a company rep about it.

You can pray for me if you want.....
....thanks for all the love and prayers and encouragement as always friends.

I will try to blog when I can.