OUCH.

So today I am feeling some better, must be fighting a virus of something. Today was I.V. The needle infiltrated the vein ( I think infiltrated is the word) . Anyway that's only the third time that's ever  happened to me ever including being in the hospital .I hate it, but it is what it is and I had to get stuck where I hate it because of my other arm being messed up. Oh well. I met a sister and a brother from North Dakota , they were nice to talk to and they were home schooled also, like me. Also a couple was there and the husband reminded me so much of my neighbor he could of been his daddy. Maybe he is his daddy. That would be something. So I have been feeling rough and had a pretty bad day but I know that everything will be alright. Romans 8:28

The Last Couple of Days Have Been Rough

 I have not been feeling so good but today I am a little better but i am not o.k.

Today....

 I did not go to the birthday party, I went to sleep. I was too tired. I did get to pet Zoey dog today which was nice. I don't get to see her very often because she is so big and gets so excited I cannot go out there to see her without anyone around. Also I was off my feet so long, I could not get around in the snow with the walker and only using one leg. Now with my brace things are so much better and I don't need that BLOODY OL' WALKER no more!! :)  I started a sewing project and was falling asleep so I did not get very far.  So that's that .

Have Not Had a Good Day, But it Was Not Bad .

 Have had more seizures than normal after I.v. , but not awful. Thats all I have to say about that.

I Got Invited To a Birthday Party!!

Last weekend I got invited to a party that happens this weekend. I am hoping to attend. Hopefully my sister will be there to just look out for me a bit.....Its in the afternoon and that's seizure time. But I am so happy :) Even if it turns out that I can't go I am happy to be thought of and included.Sometimes life sort of passes you by and well..you get forgotten. Sometimes though its because I frighten people. Maybe it is also because they feel pressured by the diet I have been on for years , but I am happier with an apple than any fancy stuff and I can even bring my own. I am Happy !!! :) As my youngest sister says "BWEEEEEEETT!" ( that means happiness if you wondered).
 Also today at I.V. I saw some girls probably 1 or 2 years older than me that I have been curious about, they come from New York every other month....I have seen them a couple of times. Anyway they were doing this collage math homework , talking out loud....all I can say is WoWZZZZEEEE I am impressed. Advanced, Advanced, Advanced.

What is Maturity, Being Grown Up, Is The Definition Solid or is it Mere Opinion ..Solid or Otherwise?

     I don't really know the answer to these questions. I know being responsible is part of being a grown up but.... a kid can be very responsible too. Grown ups can be really irresponsible as well.
     If you never fully physically mature if you just can't seem to get any further, your still a grown up if the law says you are right ??? I think about when I was in Cleveland and people from pediatrics had to be sent up to me. The adolescent councilor person had to come up and see me not the adult one. I am still a grown up, just a different sort of one. I feel like a girl that got stuck and everyone else is grown up and moving on in life. In someways maybe I do think differently but does not every person?
     One time I saw a psychologist and she wanted to know about the friend that I spent the most time with, so I told her . At first she was pleased until she asked how old my friend was ..I told her she was in her 60s... I thought, because it would not be polite to ask.  The psychologist was very angry . "You mean to tell me you spent all that time with someone in their 60s ? " YES! " Your insane. You should be out with people your own age doing things people your own age do. Your friendship is unhealthy and socially unacceptable."

 Well, I took a big gulp and said ,"Your wrong...Where is it in life you only spend time with people your own age besides in grade school? You must interact with people of all ages... nearly everyday." I spoke so quietly, I felt like someone put a enormous cement block on my back, but she heard me. " We are done." was all the psychologist said after that. 
   I don't think that psychologist was very mature, calling me insane , only because I had a friend that was much older than myself. She may of been more of a Grown up than me ...but there is so much I cannot understand.

Who I wish To Meet.

 If I could meet anyone in the world I would meet Patch.
http://unewsonline.com/2013/02/15/patch-adams-and-his-revolution/

My New Chair Came Today!

 Today my new wheelchair came today , I am very happy with it. It is a thousand times better than my old one and I can even push it without giving it everything I have got. It is even PURPLE my second favorite color. My first is pink but for a wheelchair I like purple better... I don't have a reason behind this. The chest strap is good, so there is no possible way for me to fall out of this one. When we got the old one we didn't think I would need it for long but........I got worse and the old one became no longer practical. Not a very good thing to need, a wheelchair but last summer I missed out on going places some just because it was afternoon, too many seizures and Mommy thought I was going to break my neck. I can't see my seizures..I don't know what my falling looks like..I feel the pain of hitting the ground though. Anyway with a wheelchair I can go and be safe. I don't use it all the time though , just when necessary . I am still mostly safe in the morning.
 This is like mine except I have a headrest and some other add ons .

 http://www.convaid.com/pediatric-convertible-wheelchair.html

I Forgot to Say This....

 I got to hold a baby yesterday!!! I wanted too so bad and someone helped me to hold the baby. They read my thoughts.

What I Have Been Doing

 Friday and Saturday I sewed for 15 and a half hours making 2 little bears as gifts. Both people were happy, I am glad :) Sunday I was invited to a going away party and a very good friend of mine was there , though we live somewhat far apart and I have only seen her a handful of times I feel as though we are the best of friends. Through the mail we have shared our trails, hopes, and dreams. She had a seizure one time. She loves me and we just seem to have a deep understanding of each other. I wish I got to see her more often.She likes art like me!!!
  Another thing I wanted to say is that I'm getting a new wheelchair!! We found it on Ebay for a really good deal. It is a convaid type chair with self propelling wheels. The big wheel can come off making it really nice because sometimes my family just pushes me anyway, and it would be easier in a restaurant and stuff.My chair now weighs over 75 pounds and is a bit too big, my legs were too short for the leg rests so Daddy taped blocks of wood on there so my feet would reach. So that is what has been happening.

The Sun Came Out Again Today !

 The sun came out again today , the brace man did not say anything about making me a wedge on my shoe, :) I am so happy about this , so happy !!!! I heard about the meteor , I hope the second one does not kill anyone. It is really weird that this happened because yesterday at dinner Daddy said " I feel as though the world as we know it shall end, soon" He seems to say something like that quite often when a natural disaster hits. I think he can sometimes sense planetary forces or something. He also seems to pick vacations on disasters too , and not just natural ones 9,11 for example. But not always.
 

Today was Good Thus Far

 Today was good so far, I love seeing my parents hug. When they hug I know everything is o.k. Nurse Bonnie at I.v. made me a beautiful pendent!!! It is a clearish purple stone shaped like a heart. Yesterday my sisters boyfriend had a meeting with Daddy in the basement...love is in the air , that's all I'm going to say. It make me happy she is happy but if she gets married I will be slightly sad cause that means she will move out again, she was gone for awhile before. She works a lot and I don't see her that much anymore . She is a grown up. But today has been beautiful and I am happy and I am loved.

I Try To Do What The Doctor Tells Me But......

Sometimes I cannot. It drives me bonkers, and sometimes even though I do everything they tell me it does not work. I am really frustrated that one of my P.T. exercises hurts me so much today I only was able to do it 8 times instead of 30 , I just couldn't do it. I did do my exercises faithfully before I got the brace and still ended up with the brace, 2 times a day everyday. The insurance took about 3 months to get everything together, if they had hurried up maybe my knee would not of got too wasted not to mention my ankle. I guess wasted is the right word, or maybe its floppy? I admit I get obsessed with what people tell me to do. I have to tell myself my doctor ain't my Daddy, I always have to listen to my Dad .  That is how I am. When I was younger my grandparents would even try to get me to do stuff my Parents told me not too just so they could hear my lecture about what Mommy said. Sometimes thought, trying to please people gets into the way and one time when someone told me to try the keto diet , I lost 7 pounds in 7 days and made myself sick, already  at the >2nd percentile for my age, it was not safe . I still feel like I should be doing it and it irks me.

The Sun is Shining !!

The sun is out and it is a beautiful day , I wish someone would take me outside today ...and keep me from falling and hurting myself . I only have one pair of shoes though and it looks like a mud cake out there, I cant walk without those shoes because I can't walk without the brace. I am told it is cold , it is windy. If I want to go out enough I will manage it, the deck is less muddy , maybe I could go out there? I will find a way.

Roald Dahl, Brilliant Fellow!

Today, I had I.V. and read some of Henry Sugar, I am not finished but I must say Roald Dahl was a very good writer. I have read a lot of his books. Fantastic Mr. Fox is the best, I think anyway. Roald Dahl has a children's and young adults  charity that helps families that are struggling with neurological problems acquired brain trauma and blood disorders a cause that was close to his heart because of his own family and himself.http://www.roalddahlcharity.org/Default.asp?PageID=5 Pretty cool I think.

The Woman who Had Polio

 Yesterday at I.v. I saw a woman I had seen around but never talked to because she always had a private room. I said hello like my normal habit  and started to take my brace off ( I am supposed to check my skin), she was watching me and told me how she also has a brace similar to mine that she cannot stand to wear because it has metal parts at the ankle that cut her. She really wanted one like mine and she could not wait for her daughter to see mine . Well the daughter came and took a look at mine , she told me how her Mom's was different because her Mom's ankle completely turned in.....well so does mine so I showed them how I my leg is when I walk without the brace....I was like her Mom..sort of , you see she had polio and her ankle got stuck like that.Awful. I wish they could of done something before it got stuck, it makes me so sad.
  Today at p.t. I found out I will probably need a wedge attached to my shoe because of my knee and leg is still turning some. In the depths of my soul I was thinking " NO WAY! Grrrrr!!!" Then I wanted to kick my own butt because I have a ankle that can still move and at least there are things that can help my walking, and there I am all mad because I need a little more work than just a brace.
   Also I was decided to go to p.t without the walker and I did, I used their walker for some of the exercises but other than that I did alright :) !!!
   And here is something I find really funny , Mommy kept calling p.t.,  phys.ed .

I.v. and Hyperberic Chamber Treatments........

Twice a week I get I.v treatments and three times a week I get Hyperberic Chamber therapy. The I.v. makes a big difference in my seizures , I only have 3 or 4 the day I get the I.V. , The Hyperberic Chamber I cannot tell any difference. The trip is 2 hours away and one thing is for sure,  I wish it was closer. I have lots of friends at I.V and I always like seeing them , I never would of met so many people if I was not sick. I also made friends there one week and found out the next they had died. It has been a little hard for me not to start crying about it in the I.V. room, especially if I have to sit where they used to. I don't talk about this, I just don't. Also I lost some friends because they don't want to talk to me anymore it seems . I didn't mean to offend them. There was a couple who always would talk to me and we were really good friends they were Catholic and told me stories about Saints sometimes , I am not Catholic....One time they were telling me a story I knew nothing about and they said  I should know about it already, of course I didn't so I told them I didn't because I was not Catholic...they didn't tell me the rest of the story and they never spoke to me again. I did not say it in a mean way. Oh well. I guess that's how things go sometimes. Maybe they were just caught off guard that I was not Catholic??? I say hello to them but that's the extent of our conversation now. Then there is Ralphie, I am very glad when he is there! He even gave me a pen with my name on it. He may look tough because he is a Motorcycle Dude,  but he is very nice.

Excitement, Disappointments, and Happiness.

On the 31st I got my brace . Oh how excited I was, longing to use my leg again and get rid of the old walker. Well it has a break in period and I have to use the walker still . Poo. I am still so glad I have it now so  hopefully I can dance..soon. I had to wait since November for the thing and my leg started not working in September. That is a long time. Anyway I had to get new shoes because the brace is so big . My foot it tiny, ridiculously tiny ...think size 1 tiny. But I am glad it was tiny enough that I could stay in the kids section . Why???? So my shoes match!! If one was woman's and one kids they would not match. Also no dress shoes would work with the brace :( :( :( :( :(   (that means sneakers at church).  I did get to buy a book I wanted since August and yesterday I got to go to a Jazz Dinner . I almost didn't get to go and I ask to go to it for my birthday and I would of been really sad if Daddy said no. Grandpa showed up at our house and said he was going and that saved the day!! A good friend was there , I had a heap of seizures 13, but that's better than 25 or 30.