Getting sick

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.

Really

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.

I Am

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.

Avoidance

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.

Avoidance

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.

Life

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.

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.

Twisted

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.

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.

Princess Karli

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.

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.