TUESDAY, DECEMBER 7, 2010
My fear of death, of losing everyone i love thats here. Im afraid i wont have enough time with them. That i will miss them so much. That i wont get to meet everyone i want to and talk to everyone and do everything. I trust, that God and Jesus have a plan for me and ill meet who im supposed to and talk to who im meant to saying what im supposed to say, i hope. I used to keep schedules for mom on the calendar, and computer for movies apts. Slowly i stopped doing it until it stopped altogether, and now she cant remember them so much. I don’t know if my family will ever know, how blessed i feel to be in it, to be in everypart of it.
“they will still hold on to all of their memories! it will make the time you do share that much more meaningful” thank you
i am blessed though
i know life goes on
and that me dying, will be not having to see all you guys die
but getting to meet yous up there
I guess its true
what they’re saying, i guess when people get upset or too busy to talk to me, they’ll miss out on parts of my life. I dont want that to happen, Karli was so brave even in ways im just learning. I dont like when people learn the hard way, i love them and just want them to learn the easy way. Maybe thats what god and jesus feel like. You have to love people for their bad moments and they’re good. I have learned, from a very dear friend of mine, thats its not about thinking its ok its about accepting its not ok, thank you for that.
SATURDAY, DECEMBER 4, 2010
make you feel like you belong, they love you, they take care of you, they get sick of you, they make all your true fears come to life. What is it like to be worthless! Probably something like this. Dont use it against me because i cant control it. Don’t pretend your someone your not. Look, listen, and stop staring into space. You can do so much good in this world, and still feel so much pain. You can act like yourself, and get torn down with everything that came to you. I love you.
FRIDAY, DECEMBER 3, 2010
You’ve taken my life, youve taken my family, youre taking all of who i am. Please leave some left for me. Let me leave people be and just be that.
TUESDAY, NOVEMBER 30, 2010
Im getting so much sicker and my personality is getting so hard for everyone to deal with it just makes you feel like a burden. When they actually tell you how much of a burden you are, and they dont want to live with you it is so hard. Being a hard and irritating friend, miserable daughter, annoying to deal with sister.
How do you deal with this?
I’ve been told to fake it to everyone i dont trust, everyone who cant handle the truth, and everyone who gets frusterated by it. I dont think i could, but i really just feel like i need to. The doctors have officially said use diastat for the attacks nothing else since i had my first diastat attack. Im afraid to say goodbye, i envision my funeral. I dream of people who are always there when you need them, who care, never get mad at you, need a break, get frusterated, who tell you its all going to be ok no matter what, and that they’ll always be here no matter what or how irritating i am.
When I was little, we used to have squirt gun fights, with water balloons, and giant buckets of water. We would dump the water over eachother through the bathroom window. He always loved chocolate. He used to be able to get tootsie rolls for a penny each so hed sit there and count out 100 of them. He loved that so much.
Everyone just keeps saying how much i can control it, when i cant. I just want it all to stop. The pain is too much to bear, not to mention all the physical pain from the disease. Our father, who art in heaven, hallowed be thy name. Thy kindgdom come thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespasses, as we forgive those who trespass against us. And led us not into temptation but deliver us from evil. For thine is the kingdom, the power, and the glory. Amen.
Just keep reminding myself, the pain is going to be here no matter what. I don’t need to keep bothering people all the time because of it. They shouldn’t have to suffer with me.
Deep breaths, they help the panic attacks though. I want a life worth something. To be there for people, keeping faith. I want to love unconditionally to everyone and relate again. I want my life to mean something. It’s going in the opposite direction.
MONDAY, NOVEMBER 22, 2010
My dad used to drink, and with that and the hd he was not himself. He got mad. I guess thats why im not comfortable with people drinking. I don’t want them to change.
Daddy was gone to the bar and mom had to go with my uncle somewhere. She wouldnt tell us the truth because it was too scary. Daddy had collapsed and he stopped breathing and needed cpr. The alcohol mixed with the medications. He almost died.
I love that my mom is happy with someone shes in love with. I just miss my daddy so much that i don’t know i could handle to go to their wedding. I can’t watch them touch each other. I just feel like it would hurt my dad so bad. He was often afraid of her being around other guys from the hd. Her sneaking out and seeing them even though she wasn’t. When i can’t handle things i turn it over to god and jesus. I can’t worry about the future it hurts too much, lord my one and only god, please im resting with faith this worry, and knowing its going to turn out how its meant to be. No worries, just always keep faith. It’s so hard but so important. It hurts so much worse when i know what they’re doing. It’s too soon for me, its too soon, its too soon. I want my family back.
It’s hard walking into stores and seeing your classmates working. Go out to eat wow their they are, rent a movie oh hi i figured you’d be here. Really?! Im getting so frustrated lately throwing things and yelling really loud. I can’t help it.
SUNDAY, NOVEMBER 21, 2010
So Sick Of Being Sick, that i dont know what to do
What do you do, when you cant handle the weight of your stress, its too much for people your comfortable talking to to take, your not comfortable around very many people,your too tired to always try to get people to understand, your dying and afraid of the days to come without being able to communicate, can’t run your too sick, can’t go back, you just want your family back, you just want yourself back, you break down and cry, embrace this whole being tired all the time thing, and never get out of bed.
Im constantly in pain in some way or another. Stomach pain, dystonia, headache, emotional pain, or the pain im feeling in my head that never goes away. When i have attacks at school, i try to put off telling them until it gets worse. They try to remind me we can dodge most of the pain, and to me that seems so different, not having to survive through all the pain. I’d love for this pain i feel to go away so i can live, for these symptoms to leave so i can help. I just can’t live a full life after this, im too tired. My body tries to go into a seizure and it cant because its out of energy.
My arm got stuck, for 7 minutes. Mom was timing it. I wouldnt mind an arm massage right now.
I think, my jhd has taken over so much that i have thoughts that occur and i need relief, i try to talk to somebody. If they’re postponed I don’t know how to handle it. If i have a situation that needs coping with or ill forget it and wont be able to cope, i need relief again. Then if the even repeats itself somehow, it hurts so much worse and I feel more alone.
FRIDAY, NOVEMBER 19, 2010
Its pretty amazing, that the kids i started with who moved away, driving cars, dating, working, i’ll be dead before they start having more kids. Do you talk to them? Hear about their lives? How do you do this? It’s so great when the school throws all that job stuff into your head when they know they’re not supposed to. Learn how to fill out these forms for working at a grocery store. Here’s a form to learn how to fill out about working in a park and having to do maintenance forms, really?! Fuck Off Kids in my class are having babies, i want a little girl, im never going to get to have one. I dream of my funeral service, everyone saying goodbye and hugging each other, I won’t get to talk to them again. It hurts.
THURSDAY, NOVEMBER 18, 2010
What I Need
I don’t need an in compassionate psych ward to give me sedating meds. No doctors evening out meds to find whats wrong. I don’t need people trying to fix me. I need someone to care.
I often twist peoples words when they’re talking to me. I don’t know why but i twist it and can’t handle it. I don’t want to hurt them i love em. I don’t know what to do to get my point across regularly. I don’t mean to upset, stress, or hurt them. I thought being sick would be so much easier then this. Like, its ok because people will understand that it’s not my fault. Until I get stared at, watched, looked at funny, or treated mean, it doesn’t feel like I thought. It feels sick and different, awful, sad.
They want me to think about getting cured when it’s time. I don’t want it. I’m already so tired. I’ve lived my life for so long, and I couldn’t handle beginning it again.
I went to the dentist, afraid of the pain of the needle, but this time it didn’t hurt. The pain of jhd is so much worse that this seemed like a relief, like nothing.
TUESDAY, NOVEMBER 16, 2010
These attacks, hurt so bad, and the myoclonis is so annoying. I don’t want to start in school again. They have been accompanying my dystonic attacks lately and it makes them worse. It’s not supposed to progress. I cant learn the keyboard i keep getting sicker and i just want to learn to play it through. I definitely still want to read the bible before i get too sick and i want to help people. I want the bravery and to not have anxiety so bad, to just help people. There’s so much i could be doing.
When my daddy died, he was surrounded my his family. We talked to him, and he was watching something in the room. After Karli died, we gave daddy her stuffed pink bunny and he just held it and cried. I took that pink bunny home with me and i often just need a piece of them both. A locket around my neck, because it hurts not to have them near me.
Daddy’s service was a celebration of life at the Bella Vista. The family came and had drinks and had a good time in honor of daddy.
Karli’s celebration was a bit bigger. It was at the funeral home and even her friends came. Her classmate gave a speech and they played amazing grace and everyone sang. I couldn’t help but cry. It hurt so bad. I just want my little sister and daddy back. Everyone formed a line and just hugged my mom. I sat with my daddy, and i held comfort in him and my family.
My daddy was mean, my daddy had hd, but he was so adorable and unique and amazing, full of love and life. I can’t ever hold anything against him.
TUESDAY, NOVEMBER 9, 2010
I seen Karli in Church yesterday. When the Pastor was giving his sermon, I could see her near the ceiling. I could feel my little sister. I started crying. I seen a little girl with longer dark hair run up and hug Karli. Then Grandpa showed up and seen the candle and said “Goddammit Rita, You Did It Again.” He smiled with so much joy and love in his heart. Mom doesn’t believe he said that, but I do with all my heart and soul. This isn’t the first time I’ve seen angels, but I felt my little sister.
Mom went to town, and Wendy was watching Karli. She came into my room and says “You’re going to want to see this.” I walked into Karli’s room and l looked at her sweet little face. “You’re going to want to say goodbye”, and she started sobbing. No, I kept saying, no no no. It hurt so bad. We had a lot of false alarms, but her lips turned blue. I kissed her and told her how much I loved her. Mom and everyone came in. They talked to her and loved her up, the Karli left. For so long I just held onto her bunny. Is the pain ever going to go away? I was always told no. It just got easier.
MONDAY, NOVEMBER 8, 2010
Its only a dream
I dream, whether at day or at night, about support and love. Like the NYA at convention, To Write Love On Her Arms, Amy Lee, or Lacey Mosley. All like convention, where they cared and times when I felt free to be happy, sad, to be me.
I’ve thought about experimenting with medications. I once took a narcotic from the medicine basket. Only like 1/2 dose more then I was supposed to. Or maybe, I took an extra Prilosec a day I didn’t feel good. It felt better to change it up myself. My friend made sure I didn’t take too much so I was ok.
I used to purposely sit at the bottom of the elevator and see how long I could go without breathing. When someone walked by, I’d let my breath out.
When I go to school, I just want to SI. I think, razorblades sound amazing. It would make the days go so much better. Just breath. Like Lacey put in the letter, don’t let it replace God. Keep hold of your faith.
I’ve been wondering if a rubber band on my wrist might help. I don’t want it to be considered SI though. I need to keep faith, always.
SUNDAY, OCTOBER 10, 2010
Gone crazy, be back Tuesday!
A saying on the internet, another one is, I’d rather be alone and unhappy then not alone and still unhappy, so true! Maybe that’s why being around people is so hard.
The day I found out Karli was diagnosed, I was in the downstairs bedroom. Mom told me Karli was going to die, she was sick. I was ok until I went into the hallway and saw her. I started crying. She said “What’s wrong?” and mom told her ” She’s afraid to get shot.” Karli started crying too.
When Karli was diagnosed, daddy was tested positive too. It’s genetic. Karli was a hero, to me and everyone. She experienced so much pain and still smiled. She loved to be called Princess Karli Belle. She loved God and Jesus, and always kept Jesus in her heart. We got Karli’s baby Sully from an abusive home, after the Monster Inc. He wasn’t supposed to grow to more then a Beagle. He’s black and whie spotted and 100 pounds. We’re thinking maybe he’s American Bull Dog. He’s unique. He’s Sully, our big Eeyore.
Daddy loved rabbits. We’d have a bunch at a time. Never a dog before Sully. He didn’t’ want dogs. He was so cute. He wrapped us footballs for Christmas. They were wrapped like footballs. We could only laugh. Sundays were always the days he wanted big meals on. He used to yell and fight. Flip people off. Throw pots at the wall. Mom wasn’t scared. We kept emergency phones and locked doors. SOS light even though it’s just because he was sick. Karisa didn’t wash the dishes once so he put them all in garbage bags and emptied it into her stuff in her room. He eventually ended up in a Nursing Home.
The day I tested positive I thought I was ok. I sat on the stairs and started crying. Daddy was in one of his moods and Mom told him ” Look at your daughter.” He was too aggravated.
The one place I have friends is at convention. Everyone cares and no one judges. A few days of acceptance is an amazing comfort. After I got tested I got Sabrael. It means the only angel who can fight off the demon of disease. It was meant to be. He crawled right on to my lap when I was picking. He picked me. I visited him every week ’til I could take him home. I was so excited when I brought him home, my little prince. He was so small and now he’s 18 pounds. He’s my baby. I used the frog prince theme for him.
Karli and I had an MRI together. They saw my brain changes and knew I had it, even before I got tested. Maybe it was the shock of reality.
I had the perfect bedroom upstairs until I had to move to the main floor for stairs purposes. I decorated it light blue with puppy paw prints. It had a queen size bed and said beware of Sabrael on a bone on the door. We turned the closet into a puppy pen. I set Sabrael on the floor in front of Daddy when he was upset and said “How could you hate this face daddy, he’s potty trained and everything.” Sabrael squatted right there. We quickly cleaned it up.
The first time I hurt myself was up in my old bedroom.I was talking to a friend on the internet and they guided me through it. I cut my fingers with glass. Back when scars lasted but a day. I didn’t dare to go much further. Evanescence and Flyleaf, always my bands of choice.
One day in school I was watching a movie in English. The guy on the movie started digging out his wrists. I felt sick and dizzy. I put my head down. 5 minutes to s to the bell I said to the person I chose to help me out to switch classes , “Lets Go.” I got up, started walking, and dropped my books, everything went black. I woke up to the teacher running in frantically, hitting the lights and stopping the movie. The principal helped me stumble out. The nurse said I didn’t eat enough, but I turned blue. We went to the doctors and checked my heart. I apparently hit my head on the desk on the way down. Talk about scaring your classmates.
I find I hate myself when I talk to people on the internet. I complain all the time. I get upset and expect them to be there. I don’t understand, I’m so different and unsettled. Unable to accept anything. No just living. It’s sometimes seeming selfish.
The easiest way to not feel guilt is to do things you won’t regret. Read the Bible, help others, even in the smallest way, do something you’ve been wanting to accomplish. Be the change the world needs. Don’t wait on the world. Trust in God and Jesus with all your heart and soul. Whatever’s meant to happen will.
The first time I hurt myself in school, I took razorblades so I could. I went to the bathroom in English. I opened the baggie and got my fingers instead. I then got my wrist and put them back and I didn’t have bandages. I got like 2 fingers. I put paper towel up my sleeve and kept pressure on it. Paper towel on my fingers and managed to say I hit my hand in the door. I got a band aid. My wrist and little finger stopped bleeding. My other finger bled all day. I managed to get a new band aid from the sub and replaced the old one, it seeped through. A blessing it stooped so I didn’t have to go in. No questions, no noticing.
I’m not mad at God and Jesus. I’m mad at the change. I miss the past. I’m mad at more stress and at my inability to cope in the past.
You never can get rid of self-harm urges, just learn how to control them. Try to avoid them. Live with them. Pressure ,stress, pressure, stress, stress, pressure.
I’m scared, frustrated, and tired, But I can do anything through God and Jesus.
SATURDAY, OCTOBER 9, 2010
Questioning your sanity
Yesterday I drank to emptiness, loss, loneliness, not wanting to move forward but back. Why are people so set on keeping everyone in life alive? Nothing matters unless they stop breathing. I feel numb, I cant feel when people care. I often just want to hurt myself again, but why? Why can’t I be content? What’s wrong with me? Does it bring out peoples emotions so I can see? Am I afraid to get sicker? Does it give me that difference I need? Nothing can take it’s place. How about attachment to my past, does it bring me back? Adrenaline maybe? I survived another day. Avoidance keeps me awake, talking to people puts me back to sleep. Then I need clear days to be awake again. Hit me with reality. Am I just mad?
It wasn’t an emergency. I told the doctor the voices told me to kill myself, a few years back of course. My mom was with Karli, my sisters were with me. They admitted me. I cried. Mom fought to get me out when she heard, Small rooms, locked doors. I was claustrophobic. I couldn’t breath. Mom got me out by finding the right person that night. It was an act by God. That person was about to leave. Traumatizing and awful.
Sometimes I want to yell. You’s aren’t here, and I need yous. But even when they’re here it’s not permanent. Flyleaf once told me they might contact me back. A year ago. I get mad, they don’t care and I need them to. I can say that to anybody.
WEDNESDAY, SEPTEMBER 29, 2010
Writing backwards Is ok, because its wonderland style. Chesh, with the ability to disapear and reappear. Sometimes we probably wish we could all do. Guilt, something we can’t get rid of, but to the people in power not troubling at all. Words don’t even always hold truth, they become dramatic. But still to us, so not. Right, Chesh. People can claim chesh as faulty, but I like to know he’s there.
It’s not my preference to want to know that I’m dying or for that case, how to die. Dying can be peaceful but how to get there is half the battle. Grace, love, peace, unselfishness. Is that how to die?
WEDNESDAY, DECEMBER 1, 2010
in the order of my life- affecting me songs
the video i got attached to when karli and daddy died
song i want to be remembered by
heres the song of my life