Jaceys JHD Journey~ My Story

I’m trying to breath, i’m jacey, i have juvenile huntington’s disease,

i’m getting ot i’m getting pt

improved by a lot new wheelchair for even when i have seizures it lifts and tilts, or will, working on hoyer lift sling, hand braces that make it so i fall i dont break my wrist, a special helmet knee pads

me breathing confused and turning is so confusing in my mind where is this or that or what do i do the stress of what i need to get done still soo tired and weak the pups are doing great with the therapists and lilli loves them when she’s here

just freeze everything it’s karli’s birthday remembory on monday.. pause toss it all out and focus on what i want to focus on, that’s a good idea, breath just breath i’ve made it so far already still, survival breathing jacey jhd progressing do what you want don’t complicate it so much have to do’s, when you can noone can decide it but you, i’m progressing i’m here progressing why can’t i get that i make the decisions but do i process what’s happening to me, is that why i feel like crying more often not just in sept. because i can’t change it?

am i awake or am i asleep how alive am i really

 

it seems i turn one way and theres a weird medicine turn again pt then theres ot you haven’t met yet and all this scheduled around what you can handle that’s where you turn and hit the wall hard because i feel sooo sick all the time turn to try to sleep hit the wall turn to try to feel better awake at bed time sleeping most the day and hit another brick wall because you’re missing out on everything by sleeping smack you have to slowly test your weight before you walk to know if you’ll feel good enough to take a step can i watch tv ipad can i get up should the bed be on hot or cold then falling down c’mon then looking at special kind of figurines but really 5 dollars for a figure that i absolutely love but why because it’s just a small painting of the world, i guess thats why i love them so much, i can’t see that world i’m too sick and allergic to almost everything smack

I was told i’ve gotta chose comfortably or quality of life, i’ve chosen comfortability. They say chose what you want to save, I chose my hands. I’ve learned a hospital bed with tray table, activities you like around you, coloring games legos, favorite movies on the tv, music, heated mattress pad and heated blanket bell and webcam and blue button for when i need to call someone for seizure purposes etc, right next to the bathroom, and the hard part is whatever happens happens you can’t explain a lot of it but it just happens because like jhd it just happened that you got the jackpot.. fidgets, find its, read books to em, play games with them i find guess who is easier because its faster and portable, dry erase board, notebook, ipad, pictures, sign language for communication.. we live in a small area so there’s not a lot of variety, i myself fire my own therapists and doctors lol they pushed me wayy too hard at physical therapy and we later found out that if i use opposite sides of my body at once it creates seizures. What can they drink, eat, what certain meds help and what don’t remember what meds you’ve tried because they might bring it up again, think out of the box pain relievers ibuprofine youd think, the one that works is the generic family dollar pain reliever, sleeping issues try sleep meds didn’t work had placebo affect? try benadryl dramamine etc pajamas if you’re covered in your bed who cares, although i prefer housedress and i have to feel everything to know if i can handle it or not if i can’t but i use it anyways i have huge movement event seizures from sensory disorder cover walls doors personalize the space i use a calender and a watch, but most the time if someone wants me to write the date i ask them what it is first lol special things and memories go in spots i can look at them and see them table tray for over me when i’m super odd stomach sick a certain kind i especially need it to do anything but watch tv, i love my beautiful one of a kind butterlies people sent me to decorate my room with i asked people to send them amazing outcome im very blessed even when it doesnt feel like it i really am

It helps to have companions i have fish and 2 kids (my puppy dogs)

If we’re all miracles and God made everything, Jesus died so all the sins can leave us and we can be forgiven.. that every second your alive is another reason for God to keep you alive and that’s important.. if i know all of that there’s still,
the painful need of someone to rescue me from this
how do i tell myself that noone is coming until God decides it’s my turn to win the battle? How do i make the hurting of having to survive, a pain seperate of jhd yet the same, by grieving having it i feel helpless because no matter what it’s still there

What I learned today is that we’re all miracles we all play our own part if we didn’t find each other we would be lost and feeling alone and even now when we come together as a community you may still feel lonely and I’m sorry you’re in pain anywhere and words can’t fix it, like being trapped in a cage.. but to love each other and share our story with open honesty and don’t be afraid to ask questions your story is unique and it touches others but that’s all how we connect we all need each other and we are all in need.. creativity can come out of struggles, making a difference.. you matter like the story of God looking for that one missing sheep out of them all and loving it so much, you are very loved even if you don’t feel it sometimes just loving people telling them they’re worth it how brave everyone is and that you’ve come so far already, you get so afraid of the future you forget what you’ve already done 

God knows what’s in your heart!!

Love,

-Jacey-

so my lack of REM sleep gives me Nercolepsy with Cataplexy The most severe attacks result a complete loss of tone in all voluntary muscles, leading to physical collapse during which individuals are unable to move, speak, or keep their eyes open. But even during the most severe episodes, people remain fully conscious

lately i’ve been collapsing unable to move any of my muscles or anything feeling dead weight on the floor unable to open eyes or anything but feel like i’m in a sleeping fatigue and it can happen randomly great, thanks life

it also is probably why i cant fully wake up when i wake up, i get stuck in my body first and need medicine

you get comfortable in the way you have it and when it comes to it the major words come out and you can’t help it because you’re feeling in the disease assumptions about what you can’t see it hurts its complicated

Life seems like waterfall of symptoms flowing down into the rest of the water and once it gets so full the dam opens and it all floods out leaving you to be deep in juvenile huntington’s disease stuck on the floor unable to move too weak too stiff and trust me extremely extreme amounts of pain 

Breath air up again after i wake up use of legs gone temporary but still so weak and chronic stiff and progressive I feel the dam starting to burst it’s scary but more a reason to get my most important things done 

I wanna walk into my little sisters room and to see her in her bed with sully and visit the nursing home to see my dad and bring him candy and his favorite food id take this

I dream of a life with no jhd we can grow up and live lives and talk to each other and see each others kids my sisters healthy grandchildren my family grown and in touch bickering like sisters can not afraid to lose anyone sometimes i just dream of my daddy picking me up when i fall no more fears when someone goes to the hospital and you stay awake scared and hurting waiting for them to come back through the door and that’ll probably be me in the hospital now ericas showing more symptoms I don’t want her to hurt and be sick too

Karli Daddy and Karlis baby dog Sully went through a door but not this one one day I might go through the door too everyone left here hurting too I don’t want them to hurt when time comes and I don’t want anyone to regret anything

I cried at Karlis graduations concerts I love her so much I couldn’t help it, i even remember skipping one of them to play in gym not a good memory

Please just let me walk in her room and everything be there including her and daddy sitting by her visiting i never thought there was as much pain in the world as losing someone

so many friends passing away think one day i could be online theyd all be fine and alive and talk to me again i miss and love them i miss and love yous all!!