More About IVIG

The actual infusion is not bad....it does not burn or anything.

I am very small so I am about half of the usual adult dose.

It does make you feel pretty rough though....fevers and general stomach sickness.

Hopefully I am over the worse and the good is yet to come.

Hope Hope Hope Hope

Been falling asleep a lot ....could be the seizure drugs though or just a combination of it all.

Sleep is good though.

I had a really weird dream.  I was on a sailboat and I was a pirate princess and Kelsey was on the boat too.  We were both pirates but we were not stealing stuff we had a note from Daddy written on yellow legal paper that said something like this:

  Dear Jessie and Kelsey,

Please come get me I am at the green circle island ( See map...there was a map stuck to it with a paper clip it was a green circle drawn in crayon with a red arrow pointing to it with a stick man that had "Daddy" written on it ) ,  I am trying to catch you a monkey.

                                                                            love, Daddy  XO

The only problem was there were 40 green circle islands and we never found him or our monkey :(

Bummer.

Anyway this dream made me laugh it is super goofy but I needed it ....:)

Wednesday I Start IVIG

  IVIG is a load of antibodies from over a thousand different healthy donors ....OVER a THOUSAND.

 So literally when I say a thousand thank yous...It will mean a thousand thank yous.

Wednesday ....All of that will be inside of me.

Whoa Dude.

seriously.

EMG Results And A Diagnosis

  So today I had an EMG done.....was not painful at all they did not use needles some sort of conductor thing and metal probe things. ( Well not painful for me.)

 So my left side is pretty bad , the nerve conductors are like blocked or something.

I sort of figured that.

Anyway I now am diagnosed with CIDP  Chronic Inflammatory Demyelinating Polyneuropathy.

It is an autoimmune disorder, my body has decided to attack itself ...to attack the myelin sheathes around my nerve fibers.

The destruction or demyelination of the nerve leads to an impaired ability of the nerves to communicate and function.

That is all I am going to say about that right now.  It is bad.

Also the EEG I recently had showed a seizure from the left temporal lobe.

The Dystonia is due to the CIPD.

Now I am hopefully going to be getting IVIG...to stop the progression.

We don't know how much or if it is actually going to make me better but if it keeps me the same that is better than worse...I have nothing to loose.


Thanks for your thoughts and prayers.

When I Really Feel Down...

 It seems like something amazing happens that cheers me up....
Recently things have been rather rough and on a very hard day I got this in the mail..

 It was a good reminder , something I needed to hear that day and also it was a wonderful reminder of how much this friend cares for me and prays for me.

I have been having a rough time getting myself  to get my work done....you may be wondering what work?

My Art for The People project, some of you know about it and some of you do not.
I make lots of  half page size drawings and give them to people ...mostly I hope it cheers them up.

When you go to see doctors as much as I do you will see sad people....not just at the doctors you see them everywhere.

Sometimes I am one of those people...but I don't want to be... I want to make a difference in the world I want to cheer them up like others have cheered me up.

I let my stack of drawings get rather low .

I feel like I was not doing my job.

So...maybe I can't make 15 a day ...some days I can't make any ...but some days I could of made 2 but I didn't .

I intend to do better...one could make a difference and if I am supposed to do it I better do it.

I pray for the people that get my drawings.  If it cheers some one up then I think I have done my job.

Jobs don't always make you money....sometimes you are just supposed to do something because God wants you to, and if you do it I believe you will have peace in you soul.

And Now Onfi....

 So now I started a drug called onfi.
I have hope that this will help. ( Cannot tell yet)

Since the last really bad seizure I have not been myself some things really are just difficult.

The past 2 days I had some sort of stomach bug...feeling much better today!

Yesterday evening a movie made me have a seizure but it stopped after 5min .

I am o.k. The thing flashed a lot. A good nights sleep helped.

Thursday was a very long day for me  had an eeg.

People were incredibly kind and friendly at the doctors office and both myself and my Mommy feel as though this place is overflowing with hope.

No one gave me any mean looks.

People were not fearful of me.

The letters, prayers, kind words,  and friendship I have received in the past month or so has meant so much to me.

Peace and love to all of you my friends.