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.