Moving

My seizures and movements are so bad that i can’t even tell when im going to fall over i just collapse, it woke me up today the movements driving me insane, good thing i have a helmet but they’ve been in all different types full blown and close together nothing e r ish because its neurological but even the spasms in my ribs are full blown through making me even breathe backwards, and i’ve been choking so easy they call it lazy tounge if it’s fatigued i eat and before i chew food it falls down too soon

Living The Impossible

im sick of living through what i cant because of medical help living the impossible too much it hurts i can’t even take antibiotics im allergic imagine having the flu and being unable to sit still and why is it i have a terminal disease and throw up when under hospital lights too long!!

May Awareness Month

Huntington’s Awareness Month
My oldest sister Karisa, My Mom, My older sister Erica, Me (Jacey), littlest sister Princess Karli Belle, and Daddy (Karl)

My oldest sister isn’t at risk, my littlest sister passed away at age 13, my daddy 2 months after, i was diagnosed with jhd and then my older sister got diagnosed too, my mom is a full time caregiver i’m now 24 my older sister 26
i love all the jhdkids jhdkids.com

family picture (4).jpg

My Life

feels like my childhood was surviving my dad, locking ourselves in rooms from him being so scary, listening to fighting and arguing scared he’d hurt mom, unable to leave because of the situation, i know he was truly my daddy inside he wasn’t like this inside him, being scared of losing karli and daddy, worrying, saying goodbye to karli over and over different times, waiting up for her to come home from the er, and then getting sick, dealing with that, erica getting sick, daddy going into a nursing home, losing karli and daddy, trying to figure out how to live life without them, trying not to rely on people so much, going to events for support and then everything goes back when you go home, trying to attack the symptoms and understand them enough to control them at all, trying to find a good doctor, get sicker and sicker and sicker feeling all of it sooo sickk all the time, watching erica get sick, watching my mom go from mom to caregiver to maid to 24/7 carer, things i never thought i’d have happen, but through it all being able to help jhdkids still!! This disease controls my life. But GOD Controls Even More Then This Disease!! Alleluia

-Jacey-

and this is the non descriptive version

karli and mom (43)

Trapped

muscle seizures are extra fun if you forgot or didn’t think you’d be getting out of bed to need it, so your on the floor hitting your head instead this is you know those tall chairs they have instead of regular ones, we have those and i wasnt wearing my helmet and seizure and fell off the side of the chair onto the puppies (who are safe) banging my head hard against the wall several times thankfully not hitting my head first, these are the sick seizures uncontrollable feeling them but not being able to scream or anything its cruel this disease twists everything the worst is when you walk out of the doctors crying because they said they can’t help you, except now it’s considered a normal thing for me to have these theres worse.. now add the stomach flu.. a cold.. teeth issues.. real seizures.. extreme stomach pain that comes with jhd, then you have to shower which causes seizures and extreme fatigue so basically mom has to shower me it’s just so ridiculous.

Sick Of It

sick of this disease it takes and takes and takes and takes i can’t even eat pizza or soda my antacid doesnt take it all away so gatorade is a small timing but good way of hydrating i dont feel i can drink enough ice cream is out for the moment hot chocolate is what im using my med in now and what to eat with it hm… what the hel* can i eat anymore!! stop messing with me these wires this pain these rules you create to destroy me my God is bigger then you but this succkkksss