Jaceys JHD Journey~ My Story

Happy Birthday Daddy i wish you and Karli could come celebrate them, I’m trying to do right so i can meet yous again one day even sully please lord i pray i miss them so much birthdays 4 days apart passed away2 months apart im so blessed to be part of your family

My jhd makes me mean and im afraid I’ll hurt people anymore than i already have like family and close friends I don’t want people hurt mentally because of me i feel like poison going through my body spreading through those i care about and I can’t be free without being free of the jhd



My old blog from 2010 and added it to this one, going through messages of friends that influenced me in different ways throughout my life. That’s one of the hard things in life you just want them all to sit still. but life changes..

i wish i were dead, i admit it i can be the worst person in the world for thinking that for admitting that but would it be that aweful for this pain to not be felt this disease pain the pain of holidays of situations of life.. would it be that bad to not have another virus on top of the virus i have had for awhile now that i cant use antibiotics for for the chronic pain and everything the doctors cant fix im selfish im pathetic im sick im invisibe im in extreme pain and i wish it away doesn’t mean i can do anything but wish so i wish it

its not fair how do i handle this when the neighbor is playing the dog music as loud as they can and i came right up to the fence and told her i have seizure disorder and she goes we have heart attacks its an old couple i dont know what to do this is also a huge quality of life issue

even my family runs in different directions i thought today could be a great day about karlis life and erica makes a cake and takes off with her boyfriend when she promised me today yesterday so i leave and we go out with lilli bless her and come home and that damn neighbors

Please Lord help me get through these days especially the ones with such special value like my father and sisters birthdays and angelversaries holidays everyday i cant do this on my own and please lead me away from temptations love jacey

That song reminds me of karli

I feel like i’m sliding down a hill towards my fate, my sisters fate in front of my eyes and i cant escape. I try to take it as graceful and least painful as possible by switching to what i can do compared to what i could. I’m really trying i really am. I’m scared shitless, but i’m also relieved that i don’t feel like i’m waiting for something that finally comes. I’m scared to die, and i’m relieved to die when i do die. I’m ready to die but i’m also not ready to die. I dont know how i’m going to handle the change of being completely reliant for all physical matters completely. I have support, but it doesn’t keep me from feeling like it’s an inevitable fate flashing before my eyes. I’m scared that someone will come and take advantage of my situation and i wont be there to help and fix it. That one day i’m going to try to talk on the phone and i wont be able to. I know God and Jesus saved me several times not just on the cross for us. and I really hope that when they say through life and death they mean that they’ll be there the whole time. When you’re on gravel in the driveway fallen down completely into a seizure in the rain because of the lightening of the sky completely unable to move you know this is now more then it was. A lot of people are scared to talk about the end of jhd, but the rest of us are forced to confront it. I’m going to the part where i wont be able to throw a bone for my puppys and i wont be able to pet them all up. I will try though. I’m afraid for my niece, that her auntie will be too sick, i partly have been a lot shes been banned from my room and i feel so bad because i love her so much and i just want to watch movies without getting sick or having seizures, with her, and awhile ago it would’ve been easy to do, but a lot of things are like that now. I have to do this, if not for me my family my friends then for God’s Will i have to make it through this see it out until God says its my time.

A very hard decision the beginning of this i just wanted to focus on my hands, and i did as much as possible and these kids i wanted to help until i couldn’t anymore.. it looks good but i actually can’t type the write way the write just im having contractions so bad my hands are going and it’s just like bam it hit me that fast this losing my hands thing.. i’m to focus on my ipad and what i can i’m going to leave this up to mom we’ll team it i’ll tell her when kids events are i’ll show her how to do things more via her computer and she can share updates you can talk to her Jane Mervar but i can’t keep using my hands and typing on here anymore, i can try typing on my website jaceysjhdjourney.com through the ipad as best i can i love you all thank you for your support i know it might be confusing for you my computer is going for repairs anyways, but i have my reason you just have to trust that

I love all of these children and their families and all of the children and families i haven’t even met still struggling in this, please know your not alone and that juvenile huntington’s disease is real and be careful who you trust in this matter because these kids deserve the best and they are angels on earth and noone should use that for anything but to help them im not trying to scare you ❤

https://jhdkids.com/

It seems like i’ve progressed a level, i dont ever know when my body mainly left side will stay contracted the seizures that make me thrash and fall and stiffen have gotten bad and longer and more often im on number 16 i think in a week and 2ish days, i’ve learned to type right handed, i wake up too early and fall asleep between 4-7am and most the time need the help of benadryl but no matter when i wake up i still have seizures and more often stuck in my body and was having real actual seizures, choking more often, reflux, dizzy, unable to handle situations bc of fatigue, the muscle spasms that make me breathe in instead of out, everything is just getting worse and i dont even know what im going to die from, i could choke i could get aspirations i cant take antibiotics it could be a seizure etc im not getting a feeding tube so i could starve long shot on that one but i’ve been losing weight fast 7 pounds in a month and its been hard to eat because i’ve been so sick all the time my stomach just seems to be so insane as does my throat with what i eat i dont know how long it’ll take im so overdue but the good news is lilli said once im grown up like she is the doctor will let me eat popcorn again!! she even gestured with the hands started low and then higher and higher and higher so is soo cute

when my legs n arms n hands n feet hurt a lot chronic it usually means the tendons are shortening ive been unable to move my left side on and off worse lately

We Need This To End

http://www.a21.org/

http://www.laceysturm.com/media

Is found in so many places people and pets painful or joyful past or present many present themselves