Jaceys JHD Journey~ My Story

One thing i’ve learned is, i don’t like change, but I also to your dissatisfaction can’t be changed, i am who i am i’m sick how i’m sick i have what happens happens and its all out of my control and i cant fix it so why do you think you can, everyone can’t change me because i can’t even handle myself, i am who i am and if you want to try to change me spare me the pain. If you want me to think what you do i’m not going to just because you want me to or think you know me better then me. Spare us both the pain. You can’t change what i’ve been through you can’t change what i’m going through you can’t change how i see it and neither can i. So if you think you can do anything but accept me for who i am and understand that i have it different then you and not try to fix me or change me that’d be great. The ironic part is i don’t like change, i’m pretty sure it comes with the disease.

jhd is taking everything slowly only water except apple juice with meds in it at night, and a spongebob push up once a day no good neurologist so shitty seizures real and muscle and events and i have jhd im soo pissed, my ear bleeding during the night from sinus but my teeth parts are randomly falling out so last night it hurt so bad i took extra sleep meds and pain meds and mouthwash and a heat rice think on max im not getting a feeding tube and i can’t eat candy anymore but my stomach still can have the worst stomach aches i’ve ever felt next to the jhd flu. uuughhhh and this dam* antivirus wont get off my computer!!!!!

i’ve taken everything gracefully so far, from regular chapter books to childrens and kindle books, i gave my regular books away, from coloring books to marker paper drawing books, i gave away the coloring books and most the crayons, from the keyboard which i completely dont remember i forgot it it hurt so bad i stopped playing it, put everything away, im on a laptop and it hurts and its hard just using it and gracefully before my dystonia takes my hands and legs, and its hard to do jhdkids updates so mom does for me, i dont even put their new ages up because i can’t keep up. so the laptop is going and im moving to watch more movies on the tv, im now on ipad, so many lights and noises etc that im going from nintendo 2ds to gameboy color. learning sign language right now id forget it asap. i can’t even remember the alphabet i went from l to n and it was a success. bad seizures do that. i couldnt even halloween because i was sick and if you have something you get something else on top of that, and then you go to the doctors and catch something else!! i’m sooooo sick of this disease!!

the ironic part is she died in 2010 with my daddy too, i’m 25 and i’m dying from the same thing my little sister died from when she was 13 years old, and my older sister has it too, i’m sicker but i don’t want her to get sick too i miss you and love you karli and daddy ❤ so many parts of life right now i could use yous here

Electric vertigo squares shocks(the doctor informed us are auras for real seizures) go through my head controlling my body hurts sooo bad getting closer together i fall on floor and it keeps worsening and seizures all kinds and spasms and dystonia panic breathing patterns differing so many trying to get the feeling better but it hurts so bad we don’t know what it is im calmed enough on my bed one spot my head still vertigo im shattered if this is going to be chronic I’m screwed I don’t even have a neurologist I just want to be carried out of here by God and Jesus and carried home where it can’t touch me anymore Is it from weather changes its so extremely ridiculous it keeps happening i’ve almost died.

my strength is in these kids

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?

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

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