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?
When Karli was little she loved playing on the playground, the slides, ladders. This disease took away her ability to do that. To wake up on christmas morning, jump on the couch where my dad fell asleep after putting out presents with my mom, and go around to everyone yelling its christmas santa came, wake up! She was so excited to open the presents and would just scream with joy. She chased the ducks and played with sully. The last christmas she had she was barely able to open her presents she couldnt get excited over them anymore she got so tired. She passed away unable to get out of bed.
My dad used to love to fix and build things. He loved being a dad and a husband. When he got aggressive and moved into the nursing home it wasnt his fault. He used to buy presents and wrap him himself when it came to the holidays. You could tell what they were but he did it himself and he loved seeing you open them. Hed sit on the back of his truck and wed play basketball all of us kids and hed teach us. When he was in the nursing home he had asked for a super dad shirt, he loved being with everyone. Before he died he couldnt walk or even attempt to play basketball, he couldnt see Karli anymore because she passed away. He died.
Seeing this disease is an aweful thing to have to live through, yet alone knowing you have to get it and still watch your older sister progress farther. Both of these amazing people loved to eat candy and they couldnt anymore because theyd choke, karli had to get a feeding tube she couldnt eat at all anymore. Thinking about not being able to communicate with the friends youve met and got to know, or the family youve grown up with and couldnt help but love, it hurts like crazy. Not being able to travel with them to Wal-Mart or be able to watch them put together project just to have to lay in bed unable to move sounds horrible. But I know its in Gods will. Maybe a cure is too.
1Now, brothers, about times and dates we do not need to write to you, 2for you know very well that the day of the Lord will come like a thief in the night. 3While people are saying, “Peace and safety,” destruction will come on them suddenly, as labor pains on a pregnant woman, and they will not escape.
4But you, brothers, are not in darkness so that this day should surprise you like a thief. 5You are all sons of the light and sons of the day. We do not belong to the night or to the darkness. 6So then, let us not be like others, who are asleep, but let us be alert and self-controlled. 7For those who sleep, sleep at night, and those who get drunk, get drunk at night. 8But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a helmet. 9
For God did not appoint us to suffer wrath but to receive salvation through our Lord Jesus Christ.10He died for us so that, whether we are awake or asleep, we may live together with him. 11Therefore encourage one another and build each other up, just as in fact you are doing.
On this mountain the LORD Almighty will prepare
a feast of rich food for all peoples,
a banquet of aged wine—
the best of meats and the finest of wines.
7 On this mountain he will destroy
the shroud that enfolds all peoples,
the sheet that covers all nations;
8 he will swallow up death forever.
The Sovereign LORD will wipe away the tears
from all faces;
he will remove the disgrace of his people
from all the earth.
The LORD has spoken.
9 In that day they will say,
“Surely this is our God;
we trusted in him, and he saved us.
This is the LORD, we trusted in him;
let us rejoice and be glad in his salvation.”
I am not invincible, and can break but when i lose strength i remember this:
Philippians 4:13 “I can do everything through him who gives me strength” 2 Corinthians 12:10 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
2 Corithians 5:7 “Walk by faith not by sight”
WEDNESDAY, DECEMBER 1, 2010
When i was younger, lets start at kindergarten. I had 3 friends. Tawny, diana, and ellie were my best friends for awhile. Id hang out with them wed play at school it was great. They all moved away of course. I became friends with Brittany, we created clubs at recess and wed go to eachothers parties, theres was alycia, id always hang out at her house. Stacy was always there she was sweet and loved animals, we’d always hang out too. Life started changing. I started to have one main friend. Jessica.
I loved her like you love your best friend. We hung out walked all over town, I started twisting my ankle. We’d ride our bikes from bills corner store to my house and back to hers. I started to not be able to do it anymore. She moved, to Alaska, ironic? I had a bunch of friends, a life. I went to camp Nesbit, sleeping in cabins with everyone, i spilled all over and felt the guilt of having to have my friends clean it up. ok. I was even in destination imagination. My cousin deserae, im not related to her anymore, she moved here and always got so upset with me for being sick and acting drunk infront of everyone. Even then i started to want to run into the middle of the woods. I wasnt as accepted anymore. I found out Karli was sick. Daddy was getting in huge fights, scary, and I was diagnosed,
I needed more help in schools, adaptations. I thought it was ok. How to get from class clocks to see what the times looked like. Rumors started spreading about me. I was officially unaccepted. Shes lesbian they all thought. Shit i am, yeah right. I had a favorite teacher i loved. Mr. Dennis. Him and mr valima became my counselors after id tried a million others.
I bribed the counselors to get me to write mood logs which id fill it quickly before i seen em. I didnt want to talk so it consisted of happy happy frustrated happy calm content. I passed out in school, i found something out of it, like i fit when i passed out. Like, I liked it. I didnt fit, but this made me fit.
I had a feeling not even my friend was truly my friend. I had elevator keys and getting out of class early. They were fighting over taking turns.
Karli was getting sicker i was so scared and upset. I never had the nya or anyone. I never went to conventions until later. We hung on. Tests MRIS. Ok.
Daddy was getting so scary and everyone was just saying it was because he doesnt get enought time with mom so they leave us kids home alone and they go to family dollar. Get a grip this town its hd! After almost knocking erica and karli down the steps with a stool, driving karisa off the edge, keeping us locked up, he went to a nursing home. Days we could only dream about when we were scared to move.
They were so sick. I went to convention, so many people and so much love. Same with curtains up, Katie Chenell, Alex, Mindy. Karli and daddy died, Erica was diagnosed a bit before. I got support from Laura, Lauren, Cathy, Mindy, Katie, I have Mynelly. The world starts crumbling. It hurts so bad. I feel like im losing people again. The moment my video was premiered at the talent show everyone supported us, it was amazing, and i miss it and i miss everyone. Can I trust it? Am i just doomed to myself forever? I’ve lost so much. Michelle understands, she gets all of it, i can trust her, but how long until i run her out too. Im doomed to be a loner, no more best friends, friends always being there. Even if i wanted too, im too sick to make it happen anymore. I am such an aweful friend, but i love everyone anyways. Im sorry. Now all i see is classmates working, driving, hanging out, dating.
Life goes on
I think, at some point in time you have to stop fearing the disease. I’m dying. But even after im gone, life will go on. People will get older, sicker, wiser, some will even die. I hope ill get to be there to be ready to welcome them. Thank you cathy for helping me realize that
Tiffany told me something very wise the other day
“they will still hold on to all of their memories! it will make the time you do share that much more meaningful” thank you, its so true. It’s ok if they’re not with you all the time, because they’ll treasure the memories they had with you even more.
We are all Gods people. I often forget to cherish people, but its the truth, we are all precious.
You don’t have to be afraid anymore, because you’ll see them all again. It’s all going to be ok. I love you. Your pretty lucky to be going first. When the jhd takes me, i’ll be ready. Ill go see Karli and Daddy again. I’ll get to see God and Jesus.
Even when I wont be able to talk anymore, I’ll know lifes still going. I know I probably wont be able to because i’ll be too exhausted or stiff. I’ll pray for yous. I love yous. Its like Lacey says ” It’s too important for us to forget.”
I know it hurts, but you have to think about it. You can’t avoid the disease forever. It’s not about smiling or being happy, its about living while you still can and keeping faith. It’s like Michelle said “It’s not about accepting its all ok, its about accepting that its not”
What Is Love
What Is Love?
A complete composition of what i’ve compiled from the multiple people i’ve talked to who actually answered the question mhm Matt
If that’s not the hardest question to answer I don’t know what is. Love. I believe love is pure and gentle. It’s unconditional and no matter what they do or say, you’re always going to care about them. They are perfect to you and they make your life better. You would never want to live without them.
How does love happen? You just meet them and love them, do you relate to them, or do you hurt when you leave them. You meet them, you get to know them, you hear their story, you start to care about them. They worry you, they scare you, they love you, they hurt you, but you don’t care because you love them! You talk to them and hear how they’re doing, happy for their blessings and sad for they’re pain. Wishing you could comfort them.
Why? Why do you love someone? Maybe God ment for you to love them, maybe you need someone to love so your not so alone, or maybe you could tell they needed you. You just want to stay in contact with them because you care about them. You need a friend, and they need a friend.
A balanced friendship where you love eachother takes a lot of give and take. You hear about them and they hear about you. Your upset and they comfort you and are there for you, as your are for them. Because you love eachother its not a burden. Look at your mom and sisters, you love them even though you guys fight and say hurtful things, you will always still love them. They can’t get rid of you.
You may not be able to see true love unless you see death. Death shows how much you truly love them and how much they’ve made your life more complete. I’ve learned that twice, and I don’t want to have to learn that lesson anymore.
Online friendships are great to have, even over the phone. You try to stay in contact through love, always available when you can be. Sometimes you give out, and you need someone to be there to see you and look you in the eye and say you’re not okay, I’m here for you and I’m not going anywhere. How do you find that?
Maybe you don’t have a friend you love but they don’t give to you in a balanced relationship. You can still be there for them and love them, you just need more. You go out there and try. It doesn’t work. You get completely lost and don’t know what to do. You break. You can’t stay broken forever. Curl up in the corner, cry as long as you need to, don’t forget to breath.
Life can break now, but it won’t stay broken keep faith. That’s when your so blessed for those friends here or not, who love you. Feels like you could never pay them back as much as they do for you. Love makes people part of your family.
You can completely hate yourself, and they still unconditionally love you. You owe it to them, to try to deal with this. Maybe it’s just all this crazyness mixed all together that forms it all. I don’t feel I deserve any of the love they all give me, why they care about me is a mystery. I’ve been broken so many times after I finally feel I can be myself. They never give up on me or break me.
Pain when they don’t reply to you, often it’s just them wanting to but being too busy, other times they just don’t feel like it. Them showing themselves to you often tells you who your true friends really are. Mindy, Cathy, Lauren, Matty, Meghan, Virginia, Katie, Chenell, and Alex. Sometimes only one or two can truly talk to you but they all love you and you’ll always love them too. Im so blessed for all of them. Even when I doubt them I’ll always still love them. People can break you, but they’ll still be there. I don’t know how many hours Cathy’s talked to me in a week.
thrashing on my side on the hard floor try to breath more regular, she’s maxed out on her meds, we have to calm her down, lift me onto Erica’s bed cover me with a blanket pulling me into reality with their words. My sides hurt from the floor, tired of going into it over and over, Sully’s barking is piercing my ears I cry, I scream.
I start thrashing on the couch, I’m here says Alex, I’m here. Do you need me to give her more meds? So she does. I was trying to scrapbook. Rests in between , stop just stop. They last so long so often. It finally calms down. I hate this! I throw the scrap booking stuff against the wall. Why are you picking it up? Because I Love You. Were you scared? No, you guys shouldn’t have to go through it.
Symptoms and how they feel
Movement Attacks/ Seizures
Thrashing on my side on the hard floor try to breath more regular, she’s maxed out on her meds, we have to calm her down, lift me onto Erica’s bed cover me with a blanket pulling me into reality with their words. My sides hurt from the floor, tired of going into it over and over, Sully’s barking is piercing my ears I cry, I scream. My eyes roll to the side of my head to get stuck or up or down, it hurts sooo bad I just want it to stop.
How did I get into the ER, I was in the van and then in an ER bed? I can’t see I’m still attacking and these sharp needles are coming from all sides both hands, the arms, the feet, then a prick of the finger. Tears streaming down my face, please make it stop, no more pokes right no more. The doctor gets excited, she’s talking!!
It all depends on where I end up, the floor, hitting chair legs, or against the table hitting the sharp edge against my head. It’s like I’ve said, try tightening you’re your leg and holding it there as long as you can, picture that unable to relax it. Erica’s done sit ups while I was attacking to see who could move the longest, I won because it could go on for hours. My breathing stops my throat won’t let out any air it hurts so bad, please just let me breathe again, I just lay on the couch, waiting to pass out.
Lights trigger them, too cold, too hot. Too much noise and too much noises and activity at once.
Some say that it’s just dystonic attacks and I shouldn’t be rescued from it, that’s because they haven’t felt this hell.
When I have movement attacks when friends or family are around, I feel aweful, how will they react?! I want their support, instead of it being the normal ride it out walk away because we’re so used to it in my family, they care and I don’t want to leave them. I guess you have to ask yourself at those moments, and you realize, who is faking? Who is real? And why does it feel so shitty when they can live without me.
It can happen randomly, like in the airways I listed above.
I can be holding a utensil and it can get stuck in my hand. Please don’t move it, it feels like tearing when you try to pull it out. Just wait for it to roll over and then when it relaxes finally, message it open. It doesn’t even have to be holding anything. My arms go still, my legs, random pain throughout my body. My hands closing leaving fingernail indents in my hands.
Obsessive Compulsive Disorder/ Paranoia
Is the door locked, how about the basement door. Check the shower, is there anyone in there? Every time I go in I have to check the shower, the tub, the cabinets. It’s safe.
Ouch!! They can wake you up, appear the next morning, or surprise you at any time. They kill you… pain that makes you beg to be shot. They’re chronic with jhd and only certain pain meds help. You just mainly have to ride it out. They have you doubled over in pain crying, its like a mixture of every stomach pain you’ve felt. You just hold on as long as you can until your body gets so tired it overtakes the pain with sleep.
Loss Of Balance And Coordination
That’s an easy one. I use my walker all the time, at least I’m supposed to, otherwise I fall to the ground. I got better at focusing it towards my knees, and that doesn’t really hurt until you do it too many times and then your knees ache. Sometimes I fall backwards and hit my head and that happens a lot when I’m trying to walk and my legs go dystonia and I fall and it hurts my head worse those times.
I have a hard time playing the keyboard because of needing to speed up your hands. I try to keep my hands active, they’re the one things I don’t want to lose but it looks like they’ll be some of the first.
I trip over myself in words sometimes. I don’t know how to respond to questions like everyone else without having to use most my brain power, and I still can’t. I can’t read long paragraphs, or understand the Bible like I used to be able to.
I’m almost always tired. I’ve gotten so weak and tired I’ve had to hand over the initiative to my mom, and I do what I can. She takes care of the birds for me and sets up the shower so I can shower. I can’t walk through most stores anymore, but on my good days I can do some of it. We use wheelchairs and a pillow and blanket. I get so tired and weak and confused that I can’t follow my perception and my friends perception or my emotions, that everything comes out wrong or confusing and I hurt them or confuse them. I feel so bad all the time for that.
When I go into a crowd of who I don’t know, or worse of who I do know, I love seeing them but I get so nervous because I can’t talk like them or I might act like an idiot. It feels like being on a stage, and when I tried to go to normal classes again, I sat in a classroom and felt like everyone was watching me.
Random Loss Of Use Of Body Parts
My legs randomly give out, as do my arms. I have so many issues that my mom doesn’t really trust me getting off the couch or out of my bed without my walker.
Depression/ Suicidal Thoughts/ Self-Harm/ Bipolar
I have such down times that I don’t understand why I have to live when I just hurt everyday. Everyone’s always too busy. I feel like I bother people too much and it’s hard for me to understand them when they talk (processing) so i gets really sad. Self-Harm, is safe, it’s mine, it makes me feel busy too. I get to control the pain, its comforting, and it releases stress through endorphins that are released. When I tried to overdose, duh vitamins geeze, no one really cared. It didn’t really do anything but I thought people would care. Is everyone just too busy, and I’m getting sicker, I just want them to slow down?
I guess self-harm is just a way to not notice anything around me. On a good day I told mom what not to let me see, I gave up the blades, and told her to lock up the medications.
Mom tells me to do something, or someone leaves a phone message, or a new rule is added to the house which is usually one Erica makes, I don’t do it, because I don’t remember. Then everyone gets mad at me.
I’ve seen spiders and bugs, and they really scare me. I’ve watched scary movies and have seen those characters in my bedroom. There’s a lot I don’t believe are hallucinations though. Like the white figures, or the auras of angels, or the person at the top of the steps. I’ve seen Karli and another little girl smaller then her in church and just started crying. I’ve seen little girls on the stairs and I ask mom is she knows who they could be, but we’re not sure.
It’s like I said in the tired weakness and anxiety- it’s hard for people to understand my emotions and confusion. How I get so tired and just need to ‘be sick’. How I want to be by my friends but not in front of a crowd like I’m waiting for them. How the doctors say my attacks are ‘just stress’ and that I’m not really symptomatic, or sick, even though it’s been proven even on brain scans.
How much I need the support from them but they’re always so busy, and then they argue I push them too much, and every other issue, I feel bad, I want to leave them alone but I need them. So I push away, and everything with them is fine.
How even my family doesn’t get it a lot of the time and they get mad at me. How I just want to spend time with them, and they’re too busy too and I can’t do the things they can.
I think we’ve all heard the phrase ‘I could die tomorrow too’ you’d be lucky, you wouldn’t have to be in pain and wait for it like it’s hovering over your head. People try to get you out of the house to do things, saying I just don’t want to, and I start to cry because if I could, I could!! A lot of my dreams are crushed from this disease.
It’s hard when I can’t swallow hard things, and I have to go to puree. It’s sad when I start being unable to breathe. I don’t want a feeding tube so it’s like it’s just one step closer to death, and everyone’s always so busy they don’t even notice how sick I’m getting, and how I almost died before convention, how we’re all mortal.
My body feels calm when it’s rocking. It often has the urge to jump, hop, like it’s a reflex. I’ve been told it’s not a symptom, but the only ones who can feel and understand what I do is God and Jesus, otherwise they can’t look in my head and see it.
It all comes down to this. Trust in God and Jesus with all your heart and soul. If life gets too heavy, pray, hand all your problems over to them and then let trust and faith do the rest. Pray that they guide you on the path that you’re meant to be on, and keep the faith that it was meant to be. That everything is meant to be just as it has happened and is. To keep away the devil’s temptations.
Jhd deteriorates your teeth, it makes you drool, it causes you to have accidents, and makes you lose your family members, and it gives you an opportunity no one else has, to feel what it’s like to learn lessons that change your life.
You only live once, when it comes down to it, how do you want to remember your life?
I never thought I’d be the sick one. I’ve watched Karli be sick, and my Dad be sick… but me? No way. I’m confined to a chair, bed, or couch, sometimes even stuck on the floor. It feels like I could walk and do everything if I wanted. I tried to go to the movies with Erica and Mom had to come get me because I was attacking in the parking lot in the backseat. I tried roaming Pennsylvania but I had a huge event. I’ve roamed through stores but have gotten way too tired to walk. I’ve tried wheelchairs through stores but I fall asleep, or else get so overwhelmed when it gets too much I literally could scream.
When I do try to walk though, my foot twists over the over and my arms spin around funny and my knees give way. I use a safe sides bed and a broda chair. It’s weird being the one having the attacks and watching my mom and sister tries to get me to the van, because they can’t! Hence, the lift she’s going to set up that she has. Watching them react like its nothing when it’s become normal. Watching them react when it’s life threatening which has gotten more often, only to say that when I say I love you I mean it. It feels out of place, like I shouldn’t be sick, I shouldn’t be stuck with the needles, I should just be able to walk out of there like its nothing. It’s not that easy, because I can’t even move. I don’t know if i’m losing weight or my skins rubbing off to my bones anymore.
People don’t understand. They think it’s as easy as it feels. I can do all these things I can’t do anymore. I’m just stuck in the house in the chair all the time, I just need to move and get out and I won’t be so sick anymore… really?!
How about all those doctors thinking this is sudo and I just learned it from my Dad and little Sister. Like I wouldn’t like to walk out of this situation down our road to town like I used to be able to. Walk right out of the attacking so I could stop hurting so much getting poked a billion times still with no luck plus blood draw and sugar test. I never thought oxegyn could hurt. Yeah, I don’t have Juvenile Huntington’s disease, but they can’t answer me when I ask them why they aren’t on the floor attacking from watching their patients. Really, all those tests and pain just to find out their not doctors. The physical therapists pushing you so hard, I had to fire them myself!
The thing that kills you is knowing you can’t go to convention anymore. You can’t go see your friends anymore. I’m having too many attacks that my motives for the keyboard, origami, everything i love besides my puppy dog, family, and talking to friends. You hurt your mothers back and have to treat her like a slave just for help… food, bed, medicine, water, moving… I don’t even need to put on anything but pajamas anymore, that is until my doctors we’re hoping will help. I don’t want a feeding tube so they wont give me a g tube which makes life more painful. I can do all things through the Lord who strengthens me.
Now lets be honest..
I know you want to add to this list
how about ‘it’s all in your head your just stressed out even if you don’t feel it it’s a hidden part of your brain’
‘go to a counselor it’ll cure you’
‘i have a 50/50 chance of getting hit by a bus’
‘i might die before you anyways’
than try living with this!
‘it’s just sudo’
‘it gets easier’ we all know it doesn’t
‘the worst is over’
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