Thursday and Friday's post

On the way home from the hospital my mom checked the gas, it makes me laugh. The next hard thing that I'm facing is the botox and phenol. I feel as if I'm always at hospitals, that's why on Friday nights I need to go barns and noble to make myself feel alive. I know my 3 sisters would have given up by now, but I keep fighting just like my dad did. I want to move on with my life just like everyone else is doing. Steph is getting married, my mom has her life, I need to start creating my own life too. I am bored half the time here, I wish my mom would sit in here with me but she doesn't. Steph is always in a rush to get out of here to go plan her wedding. When I go to church no one there sees my disabilities and I can talk to people about things that are bothering me. I can also go to Dawn she understands what it's like to be disabled and to live in pain, when we text each other we always laugh. She's helped me through so many things, I am so thankful to have her in my life. When I go see her Dale always says "don't rip up the state because my grandson and grand daughter are there". She helped me on December 23rd when I was at barns and noble and I herd the girl want a chocolate cookie and the dad said "yes I'll buy you it, because you love chocolate". I started to cry and I called Dawn, she's helped me in so many ways I am so glad that she's in my life I  her as my older sister.
Today I went to my therapist and she's blind and a born again Christian too. Before I left today I wrote my mom an email I told her how I was feeling about things. She's always with Jorma or watching her shows, it makes me sad and I feel really unwanted by her. Yesterday after we came home from the dentist she went upstairs with Jorma and went to go watch her Finnish news. It hurts me that she would rather spend her time with Jorma or watching her shows. When I got home she said didn't say much about the email but I needed to say it to her as much as she hated it. I am going to tell her that I am going to hire someone who would want to spend time with me. She's always watching her shows or doing her thing, and it's not a good feeling too. I was telling Steph this morning how my mom is so focused on Jorma that she would rather spend time with him than I. He can't go anywhere without her, he always needs her, this past Tuesday when Steph didn't come in he had to get his blood drawn from umass and he needed my mom to go with him. She only seems to care about certain things. I hate being her only option when everyone else comes before me. She could take me some where but Jorma needs her all the time and it gets annoying too.It's not the greatest feeling in the world to be ignored all the time by her. She doesn't want to talk or do something with me, it hurts me too. She doesn't like when I blog but she doesn't want to listen to me either. On Monday I am getting my hospital bed and I want Steph to put it some where else since I am always in here and it looks like my mom doesn't want to interact with me. I feel like she only uses me for the money.
My mom gave me such a bad attitude, but I needed to tell her how I felt. On Monday when I go to my volunteer job Steph is going to talk with my dds worker and she's going tell her that my mom won't do my laundry, or showers either. She puts allot on Steph, on Wednesday when I started to cry Steph felt bad. I am sick of being treated the way that I do it's not right. My mom only puts me in bed and takes me out when Steph isn't here. My mom went upstairs and watched this new Finnish show that was more important than I. She is my pca too and she should spend time with me too, and not just Jorma. It makes me feel really unwanted by her too and it's not a good feeling at the end of the day either. I miss her the person who she use to be before Jorma came into our lives. They met in 2003 and then he moved in soon after that, the end March when he left for a few days he couldn't stand being away from my mom. I can go to the library myself and every where but he always needs my mom. Next year I'll be 30 and hopefully by the summer I won't be living here anymore. But I can do allot on my own where he can't he always needs to be with someone. I can go to church myself and I don't need my mom every second, but it would be nice if she did spend time with me but she doesn't even want to do that. It makes me feel really unwanted and useless around here, Lacy makes me feel loved even though she doesn't sleep with me at nights she gets happy to see me when I come home from some where and right now she's laying in her bed in my room. So I am thankful that I have her, I know my mom would like me on anti depressants so that I would stay quiet and not need her but I don't want to go back on anti depressants I wasn't reading or doing anything fun I just sat there.
The psychologist that I'm seeing now that Ellen is gone she's a born again Christian and we were talking about the music that we both liked, I've been looking for a Christian psychologist. So it was meant to happen, I was telling her that this June I am getting baptized, I told her that offended my mom. I baptized when I little but I didn't know fully about Jesus. I was telling her that the Lutheran's have no life to them they are so serious too. I was really struggling this morning and when I was done the session with her I felt allot better. So when Ellen gets back I am going to tell Ellen that I want to go to Diane, Diane said it was meant to be that we were supposed to meet together and I agreed. I was telling her that I use to swear and now I don't swear or drink she said "when you give yourself to the Lord your whole life changes" and I said "yes it does". I told her that I wasn't use to the worship music but now I'm use to it so it's a good thing. I know it offended my mom when I told her that I'm getting baptized, when I became a born again Christian no one at the Lutheran church liked how I left there, but they are all serious and they have no life to them. When it was Christian's confirmation last year they wouldn't give me communion because I never took the class. But in the bible it doesn't say that you need to be confirmed to take it, we were talking how God isn't a religion it's a relationship between you and God. I like talking to her, it helps to have a Christian psychologist. I told her that I'll never use anti depressants again I have a God and Lacy so what else do I need? I told her 4 years ago the doctor told me that I herd voices but I told him that I only hear one voice and that is Jesus. I hope that dds can get me out of here soon. I spend way to much on my own and then my mom wonders why I change my room around, I got a call from the medical group and I'm getting my hospital bed on Monday so tomorrow Steph and I need to get new sheets.
Learning to be the light
Newworldson
When the stars came crashing down
In tiny pieces to the ground
I was all alone down here
Trapped beneath the atmosphere
Then I thought somebody called my name
I spun around and caught a flame
I gave in to a God I didn't know
And now everything is falling into place
A brand new life is calling and I owe it all to grace

(Chorus)
It's so much brighter living in Your world
Savior, what you did for me
You gave me something I want everyone to see
When we struggle and it all goes wrong
Only You can make it right
So I say
Oh I'm learning to be the light
I'm learning to be the light

When a heart is cold as ice
You can't melt it with advice
No one wants to listen to
A list of things they shouldn't do
So I build a city on a hill
And I light a candle on a sill
Knowing You'll be always knocking at the door
Oh God I just want to love on everyone
All I have is Yours to give so let the people come

Chorus

I'm learning to be the light
That makes the shadows hide
I'm learning to be the light
The light that breaks the curse of pride
I'm learning to be the light
he light that takes the weary in it's arms

When it all came crashing down
There was only darkness all around
But in the distance I could see
A Flame

Chorus
Thursday's post

I am excited to start my volunteer job, I like helping lower functional disabled people. When I was working at the arc I did money and writing skills with them I forgot that I was disabled. I can't tell my mom that I got the job because then she'll worry who's going to be my pca. I know that Steph will want to volunteer with me but I need to do it myself, I can't always be with someone. She's getting married and then she's going to start her own family so I need to start my own life too. I am going to ask Ann about the shared living I can't live here anymore my mom doesn't talk to me she ignores me half the time. I'm burnt out by her & Jorma, no one in my family needs me. I know if Miia lived in Mass then she would probably take me to live with her, she moved to Florida March of 2004. I know when I go help out the lower functional disabled people I will forget that I am disabled and my pain will go away. If Steph leaves then I'll hire a night time pca who can spend time with me and who will sit with me while I do my quotes and bible verses and even if they want to take me out that's fine too. I need to start my own life everyone in my family has a life so I need one too. I need to get into shared living and out of this house, after Steph leaves at 3 I have no human interaction. Yesterday when she left I started to cry, when we got home my mom and Jorma they were down stairs and made some fish but when I got home they went upstairs. They always do that to me, and it hurts me and makes me feel real unwanted by my mom.
This Sunday when I go to church I'm going to talk the guy who came and talked with me last Sunday, I really want to start dating again. When I get the botox and phenol Steph said that she can't watch them give it to me, yesterday when she gave my shower my legs were blue. My spasms are getting worse so is my whole body, I can't see color anymore. I wish that Suvi would hang out with me more but she's busy with her life. Today I'm having the oral surgery and I know when I get in the van Jorma will flip the mirror so he can't see me. He always has a huge frown to his face, when I moved back here in 2009 because I couldn't find enough of staff to help me live on my own he wouldn't talk to me or look at me. I am going to get the courage to talk to the guy, last Sunday he said "you can come talk to me anytime". It's not easy telling people that I have the mytonic MD, I don't mind telling people about the CP but the MD that's not easy. I know my mom won't like if I go out with him or he comes here because then I'll be living. But I need to live, she doesn't like when I go to barns and noble but when I'm here she doesn't do anything with me. I will go out and if she doesn't like it, then I will tell her "you don't do anything with me anyway, you sit in the living room talk on the phone and you go upstairs with Jorma". I will be happy if I start dating again, I want to have a boyfriend who lives close to me I've always had boyfriends who live an hour away and I want one that I can see more often and hang out with them. I miss being in a relationship and I want a good boyfriend who will see past my disabilities and see who I really am. Cross roads and horizon they both see who I really am and they see the funny and out going part to me it's a nice feeling and if I'm to quiet at horizon they don't let me leave right away. Last Sunday I was there for a while and when I got home late my mom asked me "why were you so late coming home?" I said "people wanted to talk to me".
I had my oral surgery today and I saw a nurse who worked at MHS. I got there at 10:34 and the started to get me ready for surgery. It's so weird how Anastasia works, one minute the room was spinning the next second my mom and the nurse were right by me. It feels weird too, but they filled 7 cavities and pulled out my wisdom teeth. They gave me an anti biotic because in 2007 I got a infection. Since I move around so much they can't do any work on my teeth while I'm awake, so they need to put me to sleep for it.
I really hope I get the botox and phenol soon, I am always in pain. Yesterday when Steph did my shower my feet were blue, I miss my when my life was easier. Between the spasms and pain it gets stressful, but once I start volunteering the pain and spasms will ease up. Same when I go to church and when I'm around people my pain and spasm go away, but since my mom doesn't want to hang out with me the pain is there and it gets very stressful too. I know the phenol and botox will help me, when I'm in my chair I can never feel my legs. I wish I could get in bed myself, its allot easier using the hoyer lift but my mom doesn't want too. My dad would be proud of me how I never gave up and I never will give up on life even when it gets hard. I wish my mom would interact with me, but she's so busy with her life. On Monday when I go meet with the volunteer lady and Ann Steph is going to tell her that I spend to much time alone. When I come home from being out my mom and Jorma they'll go upstairs. I don't feel needed or wanted here and I wish my mom needed me more, it would help me if she sat in my room to distract me from my pain and spasms but she won't. Steph can't watch them to do the shots, I will be getting more shots in my legs. At least for the oral surgery I was sleeping but for the botox and phenol I'm awake and I hate it too. When I see the needles I have an anxiety attack but they give medication to keep me calm. When I went in December of last year I was saying some things that I won't put on here they were distributing. I need to ask Kayley or Beth or that guy to come with me, Steph is fine driving there but seeing the needles and this time I"m getting more shots in my legs. When I get my new chair I'll be able to recline so when I read I can lay down. When my disabilities weren't this bad and I wasn't in this power chair I could get out of my chair on my own but I'm getting weaker, my mom can tell. My color is going too, when I use different colors on my blogs I need to use a color chart. Blue, teal, and purple they all look the same, I can tell what color is pink and yellow. Pray that my insurance will pay for the phenol and botox soon I need it!
Songs Of Hope
Robbie Seay Band
All things bright and beautiful, You are
All things wise and wonderful, You are
In my darkest night You brighten up the skies
A song will rise

Chorus:
I will sing a song of hope, sing along
God of heaven come down, heaven come down
Just to know that You are near is enough
God of heaven come down, heaven come down

All things new, I can start again
Creator, God calling me Your friend
Sing praise my soul to the Maker of the skies
A song will rise

Chorus:

Halleluiah, sing