Oh The Humanity!!!

 This month has been filled with much craziness....

  People not getting a long , people just being human .

But there is a kindness by Gods grace which nearly every single day I am touched by, whether it be a card, an unexpected gift in the mail or carolers singing in my room !!

 I am filled with such joy and sort of in awe of this , there IS kindness in this world.....

......In all honesty I have not been doing the greatest seizures really confuse me , my PEG tube really has been a MESS,  and the details of that is rather yucky so I will say no more about it here.

New Years Eve I am supposed to get surgery , a VNS which is a brain pace maker of sorts to hopefully help with the seizures.  I am hopeful.

For those of you that don't know me on facebook my new chair came , a couple of things which my therapist did indeed  order did not show up with it....... so with a pillow and a chest strap the delivery man  had laying in his truck we are making it work and it already has helped me very much, the old chair gave me much pain.

So .....I did not finish all the books I wanted to this year there was no way I could, you need a clear mind for that and I did not write on here as much as I wanted, you need to think to do that too, I did very few drawings ,  but I am alive and happy I am.

It really is not about the goals I set for myself , life I believe is so much deeper than that!

Thank you my friends for all your kindness and prayers .....Peace to you all.

Best Day This Year....

 Today thanks to a lot of botox my left hand was opened!
I am so happy.

 The doctor first tried my left leg but the EMG sort of probe thing was not picking up what it was supposed to...I could not feel any of it, so he moved on to my left arm.

Botox is not really so easy as it sounds for my case...the doctor used electric jolts with a probe stuck in my arm to figure out where to give me the stuff.

Yes .....you can imagine what a bloody mess that made, of course he wore gloves but some blood had run down his arm.

But I was not going to cry .....my fingers came open and then I could close them and open then again!

I was so excited I held up my hand in the air and said " high five", the doctor was taken slightly off guard but a grin spread  across his face and he gave me five.

I could not stop smiling .

I felt as though I ought to be giving high fives to everyone on the planet despite the fact I am supposed to be careful about germs right now.

A small victory ....maybe to some but to me it is MASSIVE!

But by the time I came home I was exhausted and fell asleep.

When I woke up I was greeted by some flowers sent by friends and a big box from another really good friend.....it was a great stuffed Moomin !!! 

They did not know I was going to be going through all of those pokes today.

God knew it though.

So my arm......looks like someone used it for a pincushion but hey IT WORKS !!!!

Sure it is not so easy , it is stiff ,sore , and my skin feels too tight on my joints but my hand is worlds away from where it was.

I am so thankful.

 

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.
 

I Don't Know What To Tell You

So much has happened this summer......mostly scary things like hospitals and tube feeding....and things that make me say OUCH like a nasty spinal tap. ( o.k. scream and cry to be honest )

There are awesome nurses and scary ones.

Isolation gowns make people look like puffy yellow ghosts.

There are good medicines and ones that will haunt you....

Frightening conversations about TPN,  for those of you who do not know this is nutrition by central line which I refused. ( too risky for infection in my opinion since I often get infections of various sorts, my blood counts are often low and I don't have any answers about that. )

My tube feeding sometimes works other days I fail ....I mean it all comes out.

My stomach does not always work.

Frustrating.

But I am here and yesterday was a great day and for the second or third time this year I went shopping.

Maybe I will go into more medical  details sometime but not right now....maybe never!

My home is sweeter than ever.

What Can I Do?

So I have had extreme difficulty with the g-tube , I had a lot of issues before it was in now it hurts worse.

If you have a stomach spasm when you have no tube it is bad enough but now when that happens I can barely stand it.

Also......my stomach prefers to not empty.....it gets so full that I am worried Mommy won't be able to get the drugs to go down.


People thought I was just odd that I never ever wanted lunch,that I did not WANT snacks ....breakfast normally would consist of an apple in the past and nothing until dinner. I just felt so full. Last year I noticed it got a lot worse ...I wretched a lot .

I would tell people my stomach was still full from everything I had eaten before ....and they told me it was impossible,  that I just did not want to eat.

well now I have at times ....explosive proof .

Tube feeding, painful and messy and gross.

Also I am nowhere near where they wanted me to be for calorie intake, less than a fifth usually.

Then there are times when I do a bit better , I think I never ever will fit as much stuff in there as they want .....but sometimes my stomach empties more often and have less pain and mess.

I don't see any easy answer for  this......Not sure how far I am willing to go.

Part of me wants the tube out...that would mean death, I think no matter where you moved the thing if you have as many spasms as me it is going to hurt.

I guess I will just have to deal with the pain, I hate pain meds with anti-seizure drugs.

I really do not like it at all, I mean sometimes, like at the hospital it is a welcome relief ...but not everyday....

I feel like my brain is slower than normal.....I am angry it has taken me a week to read ONE American Girl book.

I don't want it to go slower.....NO.

 I will be seeing the Neurologist this week to see about VNS.

I will also be measured this week hopefully ,to get a better wheelchair that supports me properly.

AND....Saturday HOPEFULLY I can keep away from seizures and be at the art show at the Moonshadow Cafe  ,  I will go home before I get too exhausted and Daddy will be in charge of the booth after that.

So right now thats how things are going.

Knock Knock... Protective Services

I am here to help you he said....and he was.

Last Friday I was in the hospital again and things did not go the best....Social Services was called
......Well anyway , 

things are o.k. .....the fellow showed up during my morning routine today and when my Mom was done feeding me he sat in my room and talked to me,

To make sure I was o.k.

He was very very kind and I have no fear.

He wants to help my family and me as  much as he can.

Thanks again for praying for me everyone :)


Sometimes I am unable to speak for myself and even though one of my parents has a paper that says they are to speak for me, some one a long the way disagreed .....stuff happens.

Anyway ....I am o.k.

And yesterday I was able to draw a picture for nurse Lola who does my IVIG.....her request a dragonfly on a daisy. ( but she might read this so I am not going to put it on here)

I feel like seizures are beating me up.

Because......that is what they do! 

So I  still feel beat....tired and worn.

But I have peace.