Perhaps This Is Goodbye....

 I do not want this to be the end of my blog.

Reading is a very hard time consuming thing but at least I can do it, letters dance about the page but sometimes I just forget what I read before because it was just too hard.

Writing.....sometimes takes me days .

I was an artist once but I don't remember how to draw a rose anymore it just slipped away........I do not remember how a daisy goes I know where to start and end but the middle is lost in the muck in my head.

Yes I hear it a rather annoying amount of times that I may get better that the seizures may all go away.

Duh.

Yes, Oh YES that would be amazing..........one can still hope but I want to be realistic.

I was told I have something much like Lennox -Gastaut Syndrome , but the nerve ,and auto immune things leave doctors confused...............there is much more to my case than that and I don't want everyone to know.

Anyway,  I feel like my readers had better know this may be my last blog post .....I HOPE not but it seems like as soon as my head gets back on a seizure rips it off again.

Peace to you all and lets hope I can do this again sometime.  Also I hope I have not left you all in a state of shock.

And This Was All Planned

Many of you know I really am fond of Hello Kitty , well anyway I decided to go on ebay and look at all the cuteness ..........Well I came across this wondrous lot of kittys and in the description  it said that they were trying to raise money for their daughters tube feeding formula, this caught my attention since I changed formulas awhile back and I wondered if maybe the extra six cases we have around was what they needed and maybe I could trade.

It turned out that their daughter actually did not use that formula but she uses my current kind, I had a small conversation over the ebay message thing about tube feeding and stuff, what I did like and what I do not like.....since the girl is only one year old she can't tell them what hurts.

I felt I had to buy the kittys so I did.

I find connections on the internet that I am in awe of.

This can only be explained by God......I mean seriously I could of looked at any number of other hello kitty things but I ran across someone who needed some human kindness and hope.

They said may Gods blessings be upon you, and they are indeed.



Today my caregiver was here and a young friend and I had a great time......She was curious of everything and wanted to know about my feeding tube, she sat in my wheelchair with my permission of course and then I and my care giver gave her a lesson about  upper body strength.....Then I gave her a kid friendly flyer about seizures that I keep on hand from the Cleveland Clinic because she saw one.....She wanted to see the place where my VNS is and then we did some crafts for her doll , and strangely enough she started an argument about the color of my Dads beard!!! I did not think I would stop laughing it was so funny because she has not met my Dad. This ......this was a good day and my friend held up the flyer about seizures that I gave her and said " Look Mom, I am homeschooled now!",  I guess she felt like she had learned a lot and I suppose she did...art, a Bible study, and a science lesson based on me I guess.

Yes, this was a very good day.

Wow.... I Am Here !!!

Sorry readers that it has been such a long time since I last wrote anything.

December 31st 2015 I had a VNS placed  ( a pacemaker type of thing ) , recovery was a little rough ....bad seizures and stuff.

The thing was turned on 2 weeks later the static feeling in my chest was odd .

It seems that it helps stop a seizure if you catch it in time, the device was turned up again this past Monday and I had a bad seizure like 2 or so days before that and was exhausted.

Now sometimes I really feel it shock me!!!

I had a good rest today though which is good because I am to get IVIG tomorrow at home.

IVIG is immunoglobulin from over a thousand blood donors , I look up the populations of the nearby towns and find myself in awe of all the people that had to of given blood for me this past year.

I am in awe of all the human kindness shown to me....a letter, a card, a package in a mysterious brown box ....a painting, and so much more.

I wish to thank everyone but I don't know where to start so I start here.

My life does not seem very stable.....I guess because we all are dust anyway .

Some of you know I was having trouble with my oxygen when I go to sleep , well I failed the test so um I guess yous out there that want to know now you know.

I am still happy and thankful for my life and I want every doctor out there or anyone else who thinks I ought to be unhappy and fret because I am not like other people my age to know that ......and I wish them to know anger and unhappiness does not get one very far ......I think they already know it .

So....that  is that. 

Feeling Better....

On December 31st I had a Vegus Nerve Stimulator installed, It is not on yet I have to heal.

The surgery was not that bad but the incision marks are upsetting to some , the incision on my collar bone feels the worst , where they put the pacemaker thing in.

I have high hopes in this thing but there is something I want to tell everyone because certain things people say bother me , not because they mean anything bad they just don't understand and well I get annoyed with explaining things..........

......Here it goes, the Vegus Nerve thing is for my seizures, my epilepsy.....I have more than that,
I have a nerve demylenating disease,  an autoimmune disease.....so before you say anything about me walking when the pacemaker thing is on , I also have more than that going on , please for my sake just don't ......don't say the thing is going to completely fix me.

I hope with all my heart that this is a step in the right direction.

I am needing oxygen at night still because it drops when I sleep,  I am a very tired exhausted person.

My simple thoughts are If  I should die before I wake I pray the Lord my soul to take and If  I live to the morning sun I rejoice that I am still here and the beauty of the day ...even if its fog.

Some of you really are going to hate this post and thats o.k. ........I had someone angered recently a few blog posts back and they came to me with a red face and told me I was overly negative but I believe there is a difference between being negative and just giving the raw facts....being ill it is not sunshine and roses.

There are so many hopes I have and joy in small things , I wonder if this is what angers people so much ?  So many people seem to think bigger is better but a big thing for me may be a small thing for them............I really miss being able to drink a glass of water.

Please try to understand me.

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.