Dirt Or Roses

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



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


You Are All Amazing!!




daddy kisses karliEverything 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.


JHD Progression

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.

damn disease2
Who wants to watch this yet alone be there when its happening when you don’t have to. I’m 25.

Feeling Alone

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