Jaceys JHD Journey~ My Story

when you fall and youve done it a million times you twist and jerk and hurt and anything and everything but you get stepped over, by humanity, by awareness, by traitors that use jhd as a cover for getting adult care, by friends i thought i had, by betrayal, and you feel like everyone just throws another handful of dirt on top of you while your struggling to breath because your drowning while everyone trying to help you who cares reaches out and throws roses

Begging for help as you have to strain through everything and it twistss new symptoms worstening of others taking everything leaving, the floor that never goes away and the dirt that people keep throwing. It’s like the bury me alive music video but also very different.

The support of the community is amazing in all i do they’re there and accepting and open. I love them all.

From Answering My JHD Info Survey So I Can Be A Researcher

https://goo.gl/forms/Irjr3FGtHf4Ee2n52

To Donating To The Fundraiser Me and Virginia Are Doing For Kids With JHD, Completely Separate Of JHDKIDS   https://www.gofundme.com/helpkidswithjhd

To Putting A JHDKIDS Template On Their Profile Photo For Support Like This One
https://www.isupportcause.com/campaign/juvenile-huntingtons-disease/4jwyf

You Are All Amazing!!

 

Everything hurts and i can’t even pinpoint where anymore mentally and physically it just all constantly hurts and the added seizures etc..  I keep hoping karli and daddy appear again and its not working they’re not anywhere i look and i cant hear them anymore and i remember being diagnosed and hiding in karlis room from daddy and finding out karli was sick and her concerts how i couldnt even handle them i always ended up too upset to get through them.. i used to walk to the nursing home to see my dad. He was verying on whether he wanted company on certain days we’d all show up and he’d not be up for it, most the time he welcomed it though, what i would do to just be able to have them back, without the disease. It all hurts along with everything else damn disease pain some would say getting diagnosed is the worst part, it’s not even close.

 

Leaving this computer i used to use all the time bc of my hands relying on my cell, there’s a lot of amazing people that don’t give up on you like my previous post and visits from katie.. but there’s also the people you try to rely on and they say not to talk to them or that i hurt them too much or they can’t handle me, i’m glad for the honesty but it hurts being stuck in the body that jhd has taken over that noone wants to watch or straight out hear about from the person going through it, it’s ridiculous i get it but i dont want it to be real because even though i’m getting worse hurting its better for them for me to be as far away from them as possible. I guess they only take doses, with optimistic people with jhd like my little sister. I wish i didn’t hurt people but i also wish they would put the fear away and be there no matter how many times they’ve said it they’d be here.

probably everybody, these videos should help, Thank you to Lauren for helping me through so much of my life to get to just keep breathing is the basic goal ❤ so if you’re talking to her don’t forget how blessed you are :p and to my niece for loving this music so i find these videos don’t worry there’s only, 8 but they’re the best yet

There’s moments in life that you want to share with everyone, you want to take a picture and video but you miss it, these memories are more real then anything else could be. My pretty birdy flash who thinks hes soo fast impressing us and named himself in that way and he takes bows and you clap your hands for him, there’s my puppies with matching pink and blue collars sleeping verticle on my bead. There’s the bad moments when all you wish for is someone who could be there to help you, to see how bad it really is even when you know god jesus and angels are there, because you can’t record or take pictures of my hands curling up and having to press one key at a time or falling on the floor from seizing and for days you cant stop. Or even amazing blessing memories like friends family our fur and feather and scaled kids. My puzzle wall ive done so many moms goal is to fill the wall. My wish to help the kids but knowing i but them in good hands i fixed up what was bothering me to in jhdkids and handed it to my mom and amazing friends who i trust completely so i could leave facebook and the computer mainly behind. My alexa reads me kindle books while i do puzzles i already have a ton of, and during seizures my dotti presses the help button and sabrael goes crazy barking. I can only make ways of how good it is to pass it on gracefully and how amazing and blessed i am to know the kids and help them and their families!! definetely a God given blessing. Only me and god and jesus can see everything through my eyes so when i really want to share the pain the blessings the information through videos and collages etc even though i know i have done it and now i can be fully sick the way its twisting me up and tightening me and shaking and i couldn’t explain it enough for you to fully see how cruel this disease is, because you can’t see what i can. When you’re listening to music and think everyone should hear several songs they’re not there to listen to them all like you’re doing. It might frusterate you from them all not understanding and you educate as much as possible but they can’t see the way you do, feel the way you feel. Like the blessing that for this few minutes i’m able to type this. Otherwise it’s just my cell as best i can old fashioned so i can work it easier. Here’s some pictures i did manage to get on i especially love the one with dotti and Cory. Until Next Time I’m Able To Type Love, -Jacey-

 

Is how my thumbs now are the whole side of my hands swelled got red my whole hands got purple spots spreading and my thumbs turned in wrong like my knees but its weirder with hands it hurts and burns all the way down the side of both arms right hurts worst concerned if they’re still like this whats next

I’ve been lost with all of this mom got me alexa for Christmas but we made sure it worked and i kept her the light worked but im sensitive to different lights so changed those back but i set up a smart outlet turns things off and on but its just like a voice switch power through or not through.. Turns my tv off but not back on though i need to say it so i can get power through to use remote so its ok if my hands go im using autofill lol mom posts the kids and i was changing kids ages but am partly through oh well it plays my music library i can ask her anything she reads my kindle books shes even webmd and Wikipedia it makes this hand and body issues of no use easier and if i cant say it mom or erica can say it alexa play taylor swift or whats weather or news or remind me too etc highly recommend especially for disability 

cagcagcagcag how many counts does it take to lose friends family my old life my old me understanding being too afraid to face me how many cags does it take to grieve so much in one lifetime that is only 25 now, how many cags does it take to be rejected to be judged to be unable to care for yourself to fall on the floor even in the shower like a rag doll to wake up from seizing how many does it take to keep me in bed so long how many cags take away childrens freedom to smile and laugh and go anywhere but the hospital for more tests until they see that the test they run has many cagcagcagcags counting them as they go along, you could type them in a straight line for a long time almost like the amount of time you’re allowed to live, the amount of time you want to live, the amount of pain your going to suffer from isnt even close to those 3 letters yet they rule lives and they define more then they are they dont represent what symptoms you get or how long they’ll live or whether its hd or jhd the symptom age does where they freeze and grow but stay at that one age maybe even younger.. there is a huge difference between hd and jhd even in the brain but we all suffer from cagcagcagcag grieving loss no understanding people leaving getting sicker last birthdays and christmas etc.. how many does it take to make a child die at even 4 years old