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.

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.

Oh Rileys...Oh They Have Come Again!

The Riley reunion has been going on and it has been good to see everyone!

I really miss the ones that did not come though.

Particularly Ashley.....I love you !

And someday I would like to meet you Tom.

This year I can't do as much as I want, but I will do as much as I can.

Anyway.......

When I came home I found out I had an appointment with a surgeon to see about an issue I have with my tube....the doctor was not comfortable working on it yesterday.

That will be tomorrow, I am glad though because it is driving me crazy and it should not be a big deal to fix.
It NEEDS to be fixed.
stupid granulated tissue junk. ( If you wanted to know).

I am thankful I have a family that cares so much about me :)

p.s. I borrowed the title from a song O'Reilly  OHHH  O'Reilly  but since I changed it, copyrights should not matter.

Adaptation

 Both Physical Therapy and Occupational Therapy are amazed with me.....how I figured things out on my own .

I am determined for as long as I can to use my right side, the good side to the best  I possibly can.

I WANT to get myself dressed ....If it takes me some time ..oh well, I am going to do it until I cannot.

I WANT to wash myself....yes I am exhausted after getting myself  into the shower and washing my hair one handed.

This actually is exercise ya know.

O.k. so some days I can't get pants on my twisted up leg...I go with a dress or skirt, thats my style anyway.

Button up shirts are mostly used as jackets now.

Drawers are really hard to open and close , I keep most of my everyday clothes in a plastic box.

Who cares if it looks weird?

So when I could no longer sit on a shower chair because I cannot sit unassisted I invented my own with pool noodles....it is not exactly a chair but a sort of body support thing , it allows me to wash my hair.

I drew up a plan and mommy helped me make it.


Lots of people get injured and sick and maybe you can't figure out something ...sometimes your Mom will need to put on your shoes for you.  ( or some body out there )

But its o.k.

It is also important to know what you cannot do ....to the person who thought I could tube feed myself all with one hand, I would like to see them try that!!!

I adapt as much as I can but I also am extremely aware of what I need help with.

On to other things ....
....IVIG  was so much easier!!!

O.k. I still feel a bit off  however I think all tube feeding greatly increased my hydration and made everything much better.

Now on to something else.....o.k. so I have had this heart/ oxygen monitor thing ever since I  came back from the hospital .....both things drop ridiculously low at night .

The neurologist thinks maybe seizures??? 

I guess I have a lot to tell the doctor when I see him next time.

Personally I believe it has something to do with my nerves...on days when my pupils stay dilated longer the worse this seems to be.

Who knows????

But hey I am alive today and rejoicing that I am alive.

Life will change for many of us...but it just means it is different not necessarily less good, however yes a great deal of emotions will be there but we have to adjust.....unless you choose not too of course, and that is up to you.  I don't believe bitterness really cured anyone, or anger either.....thats all I have to say about that right now.

Daddy I Want Too But I Don't Know If I Can....

Last Sunday Daddy took me to church at the local Lutheran church, they are wheelchair accessible neither Daddy or I thought I should be carried with my raw sore tube,  so this worked out well and we followed our neighbor and he sat with us.

I have not been to church in a looooong time.

Anyway....it came time for communion.

Daddy asked me if  I wanted to do it and of course I did but I was not sure if I actually could.

Last time I did the bread just sort of had to set in my mouth till it went down ...and the wine ...I coughed.

At the Lutheran church you go in the front and they give it to you there...at our chruch it is passed out at your seat.

I told Daddy I was afraid I would cough up communion.

Daddy came up with a plan...If they give you too much bread I will eat the rest, If you can't get down all the wine I will take the rest. Daddy said it would be o.k. and God would understand.

Daddy had to take some of the bread ....but ever so slowly with many many swallows down went the wine.

I was praying and praying.

Thanks be to God.

And it was fine.

To some people it probably seemed odd Daddy had to take some of my bread....to others they probably wonder why it took me so long to swallow the wine, but that does not really matter , not really.

God understands.....and that is that.

A Panda Named Spud

 I was given a stuffed panda which I named Spud when I was in the hospital.

I nearly squeezed his guts out after surgery because of pain.....yesterday I realized his arm was hanging by a thread.

Poor Spud ...he smells of some strange chemical like surgery smell... ether ???

He helped me out a great deal and nearly lost his arm in the process.

Daddy said whoa he looks rough! 

Poor Spud....but he is mended now.

Yesterday I had a doctors appointment , I will resume IVIG Monday.... The doctor remains cautiously optimistic.

There was also the discussion of brain surgery and VNS.

I said VNS would be o.k. but NO to removing part of my brain .

But....he upped the onfi and we will see how  I do until next month.

So that is that.

We will see how things go.

And Yet Another New Normal

 So on June 1st I had really bad seizures ...ended up needing bagged but started breathing on my own.

The local hospitals ICU was full so they sent me to another hospital.

My memories are a bit hazy....there are a few things I do remember though, but I think I will write about that another time.

I had multiple seizures.

I ended up with a feeding tube which with all honesty I knew I would probably end up getting, since October I started having a really hard time chewing and swallowing followed but I thought I was managing everything.

I would squish all my food with a fork until it was mush and mix oil in it which is always one the table because my family eats lots of salad.

I could not eat salads for months and months.

I only ate mushy or mushable stuff.

I recently found myself coughing and gagging when I tried to drink.

I was not managing that....I just thought I was.

I failed the swallowing test.

I thought I would actually.

I CAN swallow 1/4 a teaspoon of honey consistency of stuff but it takes me so long and so much work that I burn more calories than I take in.  You can't sustain yourself that way.


So now I have a PEG tube.....and it was about the worse surgery pain I ever had.

Speech therapy came today and said I will probably need the tube feeding for the rest of my life....but the lady that did the swallowing test told me that also.

I do not like the PEG tube....it still hurts actually.

I am thankful for it....and that I am back on my drugs that don't come in i.v. form...I went without them for a week.

I am thankful I am home.

I am also upset with the fact that every time now that I have really bad seizures I seem to lose something....or something in my body won't work right anymore.

I have not really talked about that because I just don't want too.

I don't want people to know.

Probably way too much info anyway.

I am thankful for the many visits I received, I am thankful for all the love and prayers.

I am still here and adjusting.

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.