I.V. And Other Happenings...

  Yesterday I went to i.v. for the first time in quite awhile, I had to tell some people I know about all the stuff the happened to me since last time I saw them. The hospital stay, withdraw, Dystonia, levadopa....I am going to be an Aunt ( they normally ask about Katie too) .
  Wow this year has been a bit extreme, so it seems.

 Now on to something else......
I seem to be falling down too much ( in my opinion) , I think I am either falling asleep or fainting. Mommy thinks it is a seizure type thing.

 I am not sure what to think about it, I still am doing a lot better in my opinion even with the fainting or whatever it is included in the number of seizure things I have it is still way way less than what I was having.

One thing that is incredibly annoying is when people ask me what am I going to do with my new freedom....well I don't really have much change in that , I still am having stuff happen every day , I cannot drive , I cannot walk far, I still fall  ( at random hours of the day) .  Yes I am very much better but I am not completely well.

I know they do not mean to be annoying ...I am just frustrated  with my body , and for some odd reason that question usually leaves me saying " I don't know" , which I probably really should explain how I currently am instead of just " I don't know" , If you want to know why I say it I'll tell you....I feel like a party pooper when I tell people how I am .

  You know ...people are so excited ( I am too) but sometimes I feel like I am a disappointing downer when I am truthful.

As a matter of fact , it is part of the reason I hide stuff from my parents...Not only do I find trips to see the white coated people ( doctors) unpleasant I feel like I am raining on somebody's parade.

 So ...I am doing a LOT better however.......I am not cured.

 On to something else....
I went shopping a bit after I.V. and bought a new dress from Gabes and a white sweater for my church dresses anyway, when I came home I tried on the dress and found that the buttons did not match up with the button holes!!  I really did like the dress so I cut off the buttons and sewed them back on in the proper places, it was not that hard to fix plus the dress was very cheap .  So that was that.

Hopes For The New Year

 I hope I have at least one seizure free day, as it's been over 2 years since that's happened.

 No matter what , I am just going to be glad to of made it to 2014!
Everyone should be, really.

Now I shall tell you about Christmas and such...... I was extremely busy working on gifts and things for my family. Christmas eve my parents , Aaron, Kelsey and I opened gifts and played some Christmas mad libs........The weird thing was someone used my name and said that I wore bells around my wrist that would jingle whenever I fell.   I DO! It is sort of a low tech alarm I guess.

Anyway the next day my Grandparents and Katie and Ethan came over and we had more gifts and played more mad libs. I couldn't stop laughing, one really should stay away from that game if you have a sore rib, I fell and hit it on the bathroom sink days before..not because of a seizure though just because I was unsteady.

Not the next day but the next was my Dad's birthday and we went to my uncle's house which is always fun and there was some good music there.

Then not the next day but the day after that was Kelsey's birthday and church. She had a friend over and seemed to be having fun.

Yesterday I had i.v. and waited and waited and waited to see the doctor and then... my friend Tammy came in I was so glad and it made the day better.  I missed her so much and I pray for her everyday.
I also saw my friend Mike and I hardly recognized him because hes got hair now!! He even grew a beard!  I hope that means he is doing better, we don't really talk too much about how we are . We both pretty much said the same thing , that we had good days and bad days.

I feel like it's been three weeks since I did anything on this blog...I guess I'm tired.

 What I made for my Dado ( I call him that sometimes)..I sewed the fabric on the sweatshirt I didn't make the sweatshirt, sorry it's sideways the computer was not cooperating.

 The back of it....

 Aaron's......

         Kelsey's.......

        Momma's...........

     The card I made for Grandpa, I made a different one for my Grandma.

 So that is what I have been up to. Very busy!

Mondays...

I.v. day, and today I got to see Ralphie!!

The day still seemed very long.

Also Sandra Westmoreland is the winner of the Easter Seal of the year contest!!

Thanks to everyone that voted for me, I am just so excited that my artwork will be on one of the stamps 2014!!!

That is all I have to say right now.

Good night folks.

Not Good...

 I wasn't feeling too good Monday despite having an i.v. and everything , normally I feel better after I have an i.v.

When I came home this was in the mail....

It made me feel some better, I even laughed, something about that pumpkin's squishy face!

It is always nice to hear from Kathie she is a really nice lady I met on a trip to Florida a few years ago.

Anyway I found out why I felt so bad....grandmals were coming. They have come and gone and I feel worn out and not myself still.

I hope the grandmals don't come back ever.

Stuff That Some Persons Don't Talk About ...But I Am Now

 Because of Labor day the office was closed on Monday, so I had i.v. today.

I was very glad because I was having so many seizures I think it was giving me a brain slur.

What is a brain slur? When you sit down to read a book only to realize that you have been reading the same page over and over for 20 minutes. When you keep forgetting what you are doing or what your going to do. You know that sort of thing............

Something still feels odd but I can't explain it.

I.v. helped me a lot anyway, and I got to see one of my friends and have one of the nurses fuss over me a bit .

I probably looked a bit sad and TRUTHFULLY I was.........................I was thinking about  ......well, my friends from I.V. that died.

I can't  not think about it.

I think about it every time I go there.

I sit in the chair you sat in.
I use the same i.v. pole you did.
We walked through the same doors.
We probably breathed the same air.
We were many times in the same room,
but now your not here.
You are gone, I stayed.

Then I think about who I have not seen in a long while.

Are you well my friend?
Are you out and about?
Are you in the hospital?
Are you in a nursing home or institution?
If you saw me would you know me?
If I saw you would I know you?
Are you gone my friend?

And well.....I wonder about that group of friends.

I don't think it is bad to think about those things....Do you??

We are all on a journey of sorts , and it does end.

I guess thinking about those people every time I go there or go by a certain place makes me feel closer to them.

But then again it's sort of heavy and SAD.

Tuesday

 Yesterday I went to i.v. since I missed it the day before.

Awful .
Unhappy.
Blah.
Sore throat, sore belly.
I tried to make myself smile at i.v., mostly because the nurses could tell I was not good and they were not smiling either.  I couldn't really smile, not until i.v. was over and I got to see Mike. That helped.

But later in the day , I felt much better!!
Thank you God!

Missed The I.V.......

  I threw up Sunday. ( which you probably didn't want to know).

Rested all day today and hopefully will get to i.v. tomorrow.

Still feel bad. Saturday was pretty rough also, I did manage to go out with my Daddy.
I am glad I did but .....I just was BLAH.

I missed another party for my sister but if I threw up there that would of been just lovely.

I will survive.

Here are some pictures from the party my Mom and I did for my sister on Thursday:

 The cupcake things , thanks American Girl Magazine.

 The Bride To Be!!

The sleeping Dog...what I wanted to do!! He He.

I thought about putting some other pictures up but some person does not want to be on my blog...I am o.k. with that.

Yesterday....

 Yesterday was i.v. .....it is where I go every Monday, it is two hours away one way.
It was so very quiet in the i.v. room, two very old woman were asleep and it was mostly empty in there.

A cricket ran across the floor...he only had one leg but he was still super speedy.
I imagined I was a teeny tiny person that was riding on his back. It was great fun ......even though it was only imaginary.

The room was becoming full, very very full , it then became a jungle. The i.v. poles right in front of me from the other people became massive trees with monstrous vines hanging down.

Mommy had no place to sit, in that jungle. She was given a metal folding chair to sit on in the middle of the room,so the nurses could get around her.....Mommy reminded me of some sort of playground monitor.

Yup....I mostly played in my imagination, because there really wasn't anyplace else for me to play.

Ralphie and The Lady With The Red Bag

 Ralphie and the lady with the red bag were at i.v. yesterday and it helped me a good deal.

I was extremely upset because my main vein has gotten a good lump of scar tissue and it hurt too much last time.

My other veins never worked that good...too slow the nurses said...but this time was different !!! It worked!!

I don't want to cry in front of Ralphie or the lady with the red bag,
I am glad I didn't have too, sometimes you are just so tired you cry no matter how hard you try to hold it in.

The Doctor appointment was ...o.k. I told him I felt drugged on top of drugged, he said give to two more weeks.

I will try.

And try and try and try and try.

Party In The I.v. Room and Other Happenings

 Today I had to see the doctor. I guess I'll be trying Lamictal .
After that I had i.v. , my friend the lady with the red bag was there and someone new............Mike.
 Mike saw my leg brace and he used to have one too, he had to have it for years but he doesn't need it now. That made me happy, he doesn't need it now...and sad, he had it for years.
Mike doesn't have a gallbladder either.
Mike eats similar foods as me.
He was very nice and told me a joke.
He wore my helmet some, and asked if it suited him ...I said maybe if it had a different colored flower on it. He said if it had cauliflower on it!!! I said I thought broccoli would suit him best , " Good, that's my favorite, said he".
We laughed and laughed.
One of the nurses said it sounded like a party in there . ( That's  because we made it one)

Mike doesn't have seizures.. he has cancer.


Afterwards Mommy took me to the store so I could get some new shoes, I needed some for fall and since I have to get 2 different sizes I thought I had better get them early before sizes sell out. Well we found one that fit the brace and one that fit the other foot but they were not the same style, I was disappointed.
Then later a person that worked there asked me if I found what I needed and I told her my tale of shoes and she and another lady found me what I needed!!
Hooray for Wal-Mart !!! When you need to buy two sizes without going broke it works.
Kids sizes always seem to have less selection , and when your in your 20s it can be rather frustrating.

Sunday I made it to church and had lunch with Grandpa!!
Afterwards rubber band man came!! He used to be a postman and he goes around shooting people with rubber bands and giving them rubber bands so they can spread the love. The first time I met him I was afraid of him because he shot rubber bands at me through the open can window when I was ten and I was setting in there waiting for my Dad  and rubber band man said to let him in!!!!! No way was I letting a strange rubber band shooting fellow into the car when my dad was in the store. It turned out he knew my dad. 

Last summer we became friends again at my cousins wedding.

Saturday my dad took me to a concert and Grandpa came.
I really enjoyed it , I had lots of seizures and that was not so good.
A man came up to my dad and told him that he really should give me some cannabis, that he didn't smoke it when he was a kid and that he really missed out and he had a friend that has seizures and it helped him. ( slightly surprising since it wasn't that kind of concert, or place ...I mean I think the place was even a tobacco free school zone!!)

Anyway I wish it was legal for everyone...............I wish.

You Know That Feeling....

When you have to go somewhere and you don't want too....
when you get there you start to secretly make plans to hide somewhere,
like under a table or in a cleaning closet???

Maybe you are one of those people that crawl underneath oil tanks.

I felt like that about i.v. Monday....but you know I can't hide.
 1# I am not left alone
2# There are no tables or oil tanks
3# nurses always are grabbing stuff out of the closet
4# I was being ridiculous.
 
I went there, got my i.v., fell asleep , woke up, got socialized.
I had a fever and a sore throat( It makes me anti-social)

I am better now and had a good day and got a nap.

I drew some and got extremely sleepy.

Oh ...my sister that's getting married came home yesterday evening and she gave me presents.
A hello kitty change purse , hello kitty buttons, a little panda dude and today she gave me necklace. I missed her a lot. What shall I do if she ever moves away?

Yesterday And A Bunch Of Thoughts...

 Yesterday was i.v. and a doctors appointment, a long ride home and a nap.

Later Daddy took me in the hot tub!!!!!! I asked him a long long time ago and he worked on it, and I finally got to go in there. I trust him to keep me from drowning though I must freak him out somewhat because he won't stay in there too long. That's o.k.


I am not sure if I am going to enter my crafts in the fair this year. I just really don't like how early it is in the year now and you HAVE to pick up your stuff before 1:00 p.m. on a Sunday. Saturday evening was much easier because if you win any prize money thats when they have the checks ready, why did they change it? I just don't know.

Sibling stuff going on , and my parents sometimes don't know what to do about it.
I guess they will calm down? I am told it's all because of horrormones.

I found out fireworks are as bad for me as I have been told.

That's all for now folks.

Ralphie Is The Best

 Yesterday was i.v. as is every Monday. But what makes it so much better is the first Monday of every month Ralphie gets an i.v. too, I mean not that he has to get an i.v. ...that is sad, I mean that I love getting to see him.

He wanted to see my sketchbook and I finally remembered to bring it this time.

I gave him a drawing and wrote " To: Ralphie, you are the best!"

We tease each other and laugh and be silly. The i.v. room suddenly is not so boring anymore ..in fact it nearly is a party in there.

Also I am excited because he said he will probably come and see me sometime!

The Man With The Staple Gun

  As I set getting an I.V. , a man with a staple gun sat across from me.

 Mommy left for a minute or so.

  I had a seizure.

When I came back the man with the staple gun stapled 20 pounds of advice papers to my chest.

Mommy came back and the man pointed to what he had done and said, " she needs that."

Mommy said, " well I don't know about that but my daughter needs to breathe , thats for sure".

Mommy tore the 20 pounds of advice off my chest, and I felt much better as I could then breathe.

I had become nearly purple.


As we left Mommy turns to the staple gun man and says, " We do the best we can",

We went home.

I Made It To Monday

  The blood work showed low blood counts but thankfully my liver was o.k.....
The Dr. said that I could slowly go up again on the Valproic Acid after I take some vitamin k1 for a while.

Hopefully, that will be o.k. because I can't deal with 30 something seizures things a day very well.

I have very little to say, except someone at i.v. told me I had to be brave......well, I get tired of people saying stuff. I really really REALLY try to be tough and everything but sometimes I feel awful and well......Why... OH, WHY... must one always have a smile on their face when they are exhausted? 



I will be o.k.

Still Not Good

 Yesterday at I.v. Ralphie was there and the lady with the red bag.
They gave me hugs and get well wishes.
Today I got blood taken... only 3 vials  instead of 18.
I feel exhausted.
The plan is to up the medicine again slowly once I get some vitamin k1 and hopefully I will not bleed again.
Drugs are hard , but without it my consciousness flees.
Someone told me I was damned if I took the drugs and damned if I didn't ...that seems increasingly true.
Well , it is what it is.

Overwhelmed With Love

 Lately I have been rather unhappy for various reasons, and felt rather ill Sunday.

I was given some kind words and a book Sunday after church. They prayed for me.
Today one of my friends was at i.v. , she gave me a hug and a picture of snoopy hugging Charlie Brown then before she left she prayed for me.

I got a card from some friends in Virginia  , and another friend sent my Mommy a card.
Yet another friend called yesterday.

God knows when I am saddest and His love shines through the love of his people and I am overwhelmed.

Strange Day Of Cuteness

 Today a woman at i.v. that I have never seen before was saying how cute I was and then wanted to know how old I was so I told her (23).
Anyway the conversation went like this:
" Oh she is so cute , how old is she?" ( the woman was asking my mom how old I was ) I replied "23"
the woman got a strange look on her face " Oh my gosh , she is just so cute I never would of guessed that she was in her 20s . That is just so adorable, I mean adorable! Oh my gosh!"
  I said " Thank you!!"  I thought it was funny . She went on " you look good, real good "
" Thank you." I said again.
I get a kick when I amaze people about my age.

Then coming home a woman at the toll booth thought my sunglasses were so cute. It is very rare for a toll booth worker to want to chat about how cute your sunglasses are, or talk about anything, they have to keep traffic moving.

Someone at the doctors said I always have the cutest socks.

All I can say is thanks.

Like I say, today was a very strange day of cuteness.

Ralphie

Today I went to i.v. and Ralphie was there. It is always fun when he is there. He fell asleep and I wrote his name and a little flower with my etch-a-sketch and when he woke up he told the nurses he did it, but they did not believe him. Ralphie does not seem like one to draw flowers. He he. Ralphie has his invitation to my house I made him hanging on his fridge . He did not get to come but I sure hope he comes someday, he said he would like to.

When we left this morning it was only 40 some degrees outside so I wore pants but 2 hours away where I get i.v. it was in the 70s ! I was sad I was not wearing a skirt. I do not like pants very much. Afterwards we went shopping . When we came home Ethan ( my sisters boyfriend) was there. I took a nap, I ate dinner. I went in my hyberbaric chamber. That's what I did today. I also fixed up my room slightly as it was somewhat messy.

Yesterday was a Very Rough Day.

You would think it would of been better since I had i.v. on Monday but it was not I felt really really bad. I was still sick, and on top of that I blacked out , or had a seizure or something and hit my head hard on the bathroom mirror. It was after my shower and I was trying to get dressed , so I was not wearing my helmet. I got a headache. I was exhausted and fell asleep until 6:00 p.m. I did not tell anyone I hit my head. What good would it of done? Whenever I get a stomach bug they want to live in me forever . It has been over 2 weeks. I hope today will be better and I will be able to eat some. I have only been awake one hour and I already want to go to sleep again. Blah. Shasta threw up on my parents bed. I think she got sick from me.