Moments Of Difference

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-

 

Twisted

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 

Repeatedly

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

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Life Screams

when all we wanted was love we got caught up and burned, but there’s a light in your eyes.. you cant stop me from falling apart because my self destruction is all your fault how could how could you hate me when all i ever wanted to be was you.. to be left out what its like to be your own best friend on the outside looking in im tired of staying at home.. that every one i knew was waiting to run.. you chewed me up and spit me out like i was poison in your mouth.. maybe you should tie me up so i dont go where you dont want me.. i wonder what its like to know that ive made the rain if i was someone else would this all fall apart when will the real world just stop happening.. wishing my wrists were bleeding from all the pain.. i told you everything you know my feelings it never crossed my mind that there would be a time that we would say goodbye what a big surprise these feelings i cant take no more this emptiness its getting harder to pretend and im not coming back around again remember when it was together til the end now im alone again where do i begin.. i wont justify the way i live my life because im the one living it feeling it tasting it.. darken everything around me calm the clouds and listen closely im lost without you call your name everyday when im feeling helpless for all we know this void will grow end this all before it gets me.. here comes fresh fire so infatuated by the darkness and so surrounded by the light but still i want whats pure and want whats right mirror mirror on the wall will there be glory if i fall.. you dont care if its wrong or it ifs right.. theres no use in crying all my tears wont drown my pain free me free me from your sorrow i cant grieve you again you bury me alive everybodys gotta breathe somehow all i did was love you now i cant let you fool me.. my body is a cage that keeps me from seeing the ones i love.. you know it breaks my heart it breaks my heart.. he sings his fear and his hope and his rage im going to take my bow im leave my cage on the ground welcome to the machine it may extinguish your pain.. if you loved me you would be here with me you want me come find me make up your mind.. your times up now thats enough now truth calls you out i hear your claims.. you wouldve never known you cant be too careful anymore.. i dont want to be left behind distance was a friend of mine catching breath in a web of lies i’ve spent most of my life learning how to react i wont be told whats supposed to be right.. you will remember remember me for centuries.. even angels fall

Different Worlds

jacey and ericai live in a world mainly adapted for juvenile huntington’s disease and family friends pets and life is completely different then the world others live in. i admit it impairs my abilities greatly and it probably is why i hurt people so easily. i don’t work, i don’t do anything that i can’t so im basically bed bound and almost completely home and get sick very easily if i go out. you go in with seizures and come out with the flu on top of it. if people don’t have a connection of living in that type of world and knowing what kids with jhd can do or can’t from experience it’s very hard to teach anyone, and you can’t change. people can go do things like friends and work and stuff i dont understand. im dealing with a torture inside of me that affects everything and keeps getting worse and does not work on a schedule, we don’t make schedules like most people, maybe for the doctors. even change throws everything off i need to know consistent and thats not how other worlds work i expect people to be awake because i cant sleep until really early when theyre going to work. and i’m talking people plural. basically everyone outside of my world. i go through seizures nerve pain falling legs giving out being sick all the time its always something and i’m watched because anything could happen at any time. especially with this antibiotic that is literally bringing me through stages of jhd. it’s scary and since going into another world to get help with my world it helps me but hurts them. i get pissed that people can go to sleep normally like that and i have to stay awake sick in pain, i get pissed people can just leave. i can’t just leave. i dont understand words most do, like rude, considerate, respect, change, lazy, selfish, sick, difference. i can’t handle it. i need to know what happens and i dont know why. when i’m told or implied im selfish, again this does imply to what everyone else does, im used to falling and needing things and when you feel like your not alone and your going through hell and they say they’ll be there for you, the consistency the promise the need to know whats happening, the ocd including not having patience. people think i can change but i cant i cant all of a sudden change, if i could im pretty sure i’d be in a better position. when you start feeling alone abandoned because you only know your world, you feel shitty and selfish and worthless etc.. when people tell you worse then that and you believe it and it’s literally like verbal abuse i dont live in that world either. its taken away everything in my life including friends i think i deserve for having to go through this. instead it’s going to torture me with the pain of losing friends grieving my family my friends many who are still alive. i grieve the entire world. because it is not available to me. and no matter how much you try, you’ll just end up frustrated because i cant leave. in the other world people can sleep and eat and go to work get a home have kids go to movies drive a million things kids with jhd can’t do. i’m not grown all the way because i’m in a simple world of very complex disease issues. you think a job is hard, try finding a neurologist that understands anything. try having such severe seizures that you feel everything you cant breath and then you breath heavy and your jerking and contorting and you just fell off something probably very tall. you think i need help i need out but i cant talk. you go to a doctor for help and no matter how many you come out crying for all the expectations and hopes. when i tried the cbd i was told if i got able to travel from it i could go live a dream, i could do so much, i was excited until it didnt work for me. it hurts. life hurts. your world hurts. my world hurts. yous shatter me with pieces of glass that you smash on the ground because i trust i open up i get what i cant handle and i break and the pain doesnt go away and even if they get it managed its progressive so it just will keep going. you may want to go to a party or something else or graduate my goal is to breath and survive one breath at a time to stay alive while your insides spasm inside you including your lungs. when you think what you want about me, remember that you can understand more then i can. it’s easy to paint people as not caring when they can go do things you can’t. its really hard to accept that thats the way it has to be.

 

 

 

Shards

After seeing and feeling what this antibiotic can do i’m literally scared and i have 10 days of it to get rid of the infection and without it it’d be one of the meds that would kill me straight off, i’m scared to take it i don’t want to it hurts like glass shards in me and everything feels weird and i feel like i cant breathe and seizures rise and everything’s worse and i literally fear for my life fear but welcome also, but if i’m going to die does it have to be this painful please lord allow me to pass away peacefully and not have to feel all of this pain amen. The medicine could go any way at any moment, but so could the disease. Getting through this a breath at a time. If the extreme head pain doesnt stop they’ll have to do more tests.