What do you do when you go from hating the disease to hating what its making you do to hating who it’s turning you into.. how do you fix a poison going through you spreading to others you love without hurting them. How the hel* do you fix something you can’t control and if you can’t fix it how can you do it people for your own selfish motives. How do you stop hurting them without permanently hurting them by disappearing. If you can’t disappear and can’t fix it and can’t stop it or help what you want to be able to control then what do you do? You might keep saying you can’t see it, you don’t see the whole 360. I can see it i can feel it i can’t stop it if i could’ve it would have never existed and how do i spare others. Poison running through you to someone that said theyd be there to another person who said theyd stay but they leave, how do you stop. Stop talking to people? live in a box? become mute?


dont believe in fake people? look again

how can people be so mean to you after everything that happens i dont get it people dont make sense all i know is if you try even the littlest bit to get back something you once had and need be sure to have a friend who’s on your side when you do it

life is mean people can be cruel and this disease is hell, i don’t know where that leaves me either

when people wash their hands of you, when you eat away at someone bit by bit destroying them, how do you get past that especially when you have a disease that can turn you into complete poison. i got blessed, when i took a jump(theoretical), someone was there to be the opposite of who everyone else is. not everyone is so lucky

what i hate most about life, nothing is ever going to be Enough until God and Jesus themselves set foot here.


i’m updating memory pages on here and amazing ppl and kindness etc.. all incredible people places things i’ve gotten to do my family people who come through my life and people who never left it.. I know i’ve tried readying myself for this part, the part where you look back at the memories and know that you can’t do it anymore but it’s great to remember. I am angry, that this disease took my ability to do anything anymore, including helping jhdkids, making videos, video recording memories, and i’m mad it took so many people away, i’m mad i’m in so much pain all the time and that the best people are in the worst situations its not fair life is unfair.. I have no choice but to accept it and remember, but i’ve lost a lot of myself in grieving for so many and for who i was and for what i could do.. and it still continues to take and take and take and take some of the best things i’ve built up i’ve had to give way to, only to be losing more and more it seems soo fucking often too

My Sister Erica and Me At My First Concert, Skillet

Disney Music

I’ve always seemed to find Disney movies have amazing music in them, Tarzan, Oliver and Company, Mulan, Hercules, all great music even if you don’t agree I still think so

This one reminds me of Karli and Daddy and our Family, I’m excited for my locket to come in to replace the one I wear out lol it did go underwater, this new one is waterproof lmao


I went for a walk, impressive right, and met a butterfly and a deer, the deer just ran away but the butterfly was flying around and was friendly and landed on a dandelion in front of me i could see its wings and watch it take from the flower then it flew away again, i found a lot of pretty places by the lake that you can just sit by some cliffs some paths, the sun made it sparkle and you can see across the other side

this is my favorite spot all unique all hard to find



I’m just really trying to survive this breath by breath each a victory, everyone looks up to me as an inspiration and I often think they just want to see that out of me and not see all of me. I get lectured about sleep schedule me not wanting a cure but i do want the cure for everyone else and how like so many people I should be more proactive do more things. Yet none of these people get that i’m doing as much as I can and I do what I can when I can. There’s nothing wrong with having a seizure in bed instead of on the floor which is what happens most the times I get up and walk across to the kitchen, other days I can go for walks to the lake. It’s very odd and I can’t change my schedule if I tried. I’m lucky I get so much sleep. These muscle seizures aren’t anything I can control and if I could they wouldn’t exist. This disease is so complicated you couldn’t straighten it out if you tried, which I wish more people would so we could get something.

but I feel like this