Continue praying for me

Last night Dawn called me and I was telling her how my mom got upset that I didn't take a shower. My spasms were pretty bad and I was in allot of pain I wasn't going to risk getting hurt by transferring into the shower.I wish I could put her in my position for a day, dealing with the spasms and pain that's not easy. I need to call my neurologist and see if she can see me the same day that I get my baclofen pump filled, I need another pain pill half way during the day. When Steph is here my pain isn't bad but when she leaves it gets worse since there is no human interaction. I can hire another pca and Dawn was saying that Jorma and my mom can wear robes at night. When I come home from some where they go right upstairs for 3 or 4 hours, and I can't reach anything to make dinner for myself either. I can reach the peanut butter but not the jelly, my mom always says "I'll be down in a second" but I take my meds at 4. I know my mom won't like me taking another pain pill but she's not the one living in pain. She doesn't like when I put ice on my back, she won't reposition me like Steph does. So I really need the courage to to tell her that I'm going to hire another pca since she doesn't want to interact with me. It does help if I have someone in my room talking with me or doing something with me. My mom watches her shows and doesn't check up on me. If she sat in my shoes for one day and felt the rejection and pain then it would be different.
So Steph and I went to the mall today and got my mom soap, after I went to barns and noble. I was gone for more than 6 hours and I am happy that I went out today. Then I went to the Lindt chocolate store and I was in chocolate heaven, I got some good chocolate too. I like going to barns and noble and get out of the house. My mom came and got me at 6 and when I got home she said "Steph needs to put you for a shower tomorrow", after Steph leaves tomorrow my mom is going to do some work she's going to put me in the shower she can't always do the easy things such as put me in bed and do my meds, if she doesn't like it then I will hire someone who will do it at nights and if she doesn't like that it's her own fault. I'm burnt out by my mom she wants Steph do all the laundry, my showers and she never cooks me good food. I am always eating the same thing, she only wants to do the easy things and nothing else. I am calling my dds worker tomorrow and telling her that I can't do this anymore, I am burnt out by my mom.
While I was out I called my neurologist to see if she can see me, I have to get my baclofen pump filled on Tuesday I need to show her my pain. She said that she is going to increase one of my meds in the afternoon I told her that if she is able to give me another pain med. When I was at MHS my body didn't hurt this bad but after I left there how public school took away PT they said I didn't need it. I got weaker and now I am full time pca, I don't mind the help but if I was there then I could do my showers. I wish my mom would listen to me when I tell her they aren't easy to do, the shower chair that I have isn't the best but she wants them done. I hope my neurologist can do something about my pain, I know my mom won't like if she gives me another pain med but I need it. At 4 my whole body hurts and I'm not sure when I'm getting my new power wheelchair, the new one will be able to recline too so when I read at nights I can tilt and recline too. My legs and back cause me the most pain, when I'm at church or with Steph my pain isn't that bad but when I'm sitting in my room might after night with no human interaction my pain goes up. My mom has her own life and she has my aunts and my sisters and of course Jorma, it's not easy living here at all. She could easily do my shower tomorrow afternoon or on Saturday but she won't because she wants Steph to do everything, it really frustrates me how she doesn't want to do anything with me she wants Steph to do all of it and it's not fair for her either.
When I was leaving barns and noble I saw my friends Dave & Shawn, I told Dave that I had a halo and he said "your halo is tarnished". Dave and Shawn are always joking around with me. They got my high school diploma when they didn't want to give it to me. Tomorrow night I am going back to the Lutheran church for the spaghetti dinner and Steph is coming with me, because I don't want to go back there myself.  I have my therapy session too and it's nice that she's a Christian and she's  blind I can relate to her more than I can to Ellen. I was telling her how I tell doctors that I have a better doctor than all of them and they ask "who is it?" I tell them it's Jesus. Four years ago when the doctors told me that I herd voices I said "I only hear one voice and his name is God". It's easier talking to Diane since she believes in God, last week we were talking about our favorite Christian artist and I told her when I first went to cross roads I wasn't use to the clapping or raising their hands. Steph gets to see how serious the Lutheran's are. Cross roads and horizon they said when I get my new power chair they need to pull me over because I don't have a license. I don't mind them joking around with me it's better than going to the more serious church. Christmas 2011 I put my phone on video mode and I was taking short video's of them singing, my brother in law Bret I could tell that he didn't like me taking video's. Everyone wants me back there, but I like the up beat music with the drums. I can't fall asleep during those services but at the Lutheran service I could. I am glad that Steph is coming with me, other wise it would be my mom Jorma, Maiju and Bret and their 3 kids and Suvi I am not sure if Brad is going he doesn't like church. Jorma and Brad would rather drink I am so happy that I quit doing that
The Reason for the world
Matthew West
There are no words in times like these
When tears don't hide the tragedies
And all you want is a reason for the world

No comfort in the greeting card
Cause God is good
But life's still hard
and your heart just wants a reason for the world

Maybe the reason for the pain
Is so we would pray for strength
And maybe the reason for the strength
Is so that we would not lose hope
And maybe the reason for all hope
Is so that we could face the world
And the reason for the world
Is to make us long for home

For God so loved your broken heart
He sent his son to where you are
and he died
To give a reason for the world

So lift your sorrows to the one
Whose plan for you has just begun
And rests here in the hands that hold the world

Maybe the reason for the pain
Is so we would pray for strength
And maybe the reason for the strength
Is so that we would not lose hope
And maybe the reason for all hope
Is so that we could face the world
And the reason for the world
Is to make us long for home

Well I know your past the point of broken
Surrounded by your frea
i KNOW you're faint and tired and lonely
from the road that you walked down here
But just keep your eyes on heaven
and know that you are not alone
remember the reason for the world

No ear has heard
No eye has seen
Not even in your wildest dreams
A beauty that awaits beyond this world
When you look into the eyes of grace
and hear the voice of mercy say
Child, welcome to the reason for the world