Jaceys JHD Journey~ My Story

I kno its not on purpose but when kids in music videos sing about being torn apart to the smallest piece and surviving its like they dont know what hell this is seizures waking up on floors noises changing everything cruel its like a world full of death because thats how bad ive been sick like death i curl up but then my system gets mad and hold in air n makes me even more sick and hot and cold and tired but too movements to sleep even after meds but the meds Just need the right timing n its so confusing gravity hates me my brain hates me more all the pqinf nerves scream in my body some n i cant stop frowing up bc my systems too slow to digest it all n my inhaler kind is gonna be changed bc the world just changes n they think its better i think its ridiculous if it works leave it

I love all the jhdkids and editing fun with videos n pictures and knowing new ones it’s all so sad though because even though i need to know the ages it still is all going to be filled out with ages every single child will die from this without help it’s great to remember them though too It’s why I didn’t keep adding ages because i just kept updating the ages bc they died so fast prayers for them all

From a book i read.. “I thought I had been prepared for Robyn’s death–as much as you could be, I had accepted that she was going to die several weeks ago, but now I realised, I could never have been prepared for it. How can you prepare for something so awful? The human brain simply can’t comprehend that level of terror until it happens and then it hits you like a tidal wave and wipes you out. Grief is a funny thing. Nobody tells you about the awful crying that physically hurts; it comes from deep within your stomach and hurts your whole body–‘keening’ was the old Irish word for it and I could see why it was called that–sometimes it came out of my mouth and I sounded like a wailing banshee. All the love you still have to give now has nowhere to go and so it pools at the corners of your eyes and sits like a brick upon your chest until you can’t breathe. Nobody tells you how every cell, every synapse aches, right down into your very core. And nobody had warned me about the tiredness. The weeks of sleepless nights and living on adrenaline suddenly hit me like a tsunami and I was exhausted. I was so tired, my bones hurt, but still I couldn’t sleep. I couldn’t face waking up again to realise she was gone.” I had lost a child, but somehow the human body kept going and the days were going past and I don’t know how they did, but time marched on. People still went to work, the post still arrived through the letterbox, bananas turned spotted brown in the fruit bowl, and everything kept going on and nothing stopped to grieve

— The Last Days of Us: An unputdownable, emotional Irish family drama for 2021 by Caroline Finnerty

Bella’s really sic cancer n hip dysplagia she hurts so bad and is getting so small by the hour. It’s so hard being unable to help her. I love her so much and don’t wanna lose her too.

My thyroid is making me bad more i feel on fire n then ice bucket n always need a fan on my head.. i need to focus on what works to keep body calm enough like ipad with alexa reading me books.. i cant even document in my calendars book n planner they’re not digital so Ipad is updated I don’t know why God’s plan involves me not being able to shower myself anymore to still being able to use computer and ipad iand when i get up etc i have all these seizurey jerky movements and thanks to who invented this word fill in thing so I don’t have to type all these words id rather be living life more like play with pups and my nieces but I can’t understand conversations only online but not in person or phone etc i can only process through fb chat not even video chatting i keep forgetting stuff and remembering randomly and when i need a word it takes so hard to find it my body s like holding me hostage painfully until I’m free of it

I don’t know whats jhd or viral or anything really it just all hurts so bad, the doctor says if I can’t take the meds because im allergic and too sickto travel my teeth issues and limited life span compared to normal will be end game. I’m thankful for his honesty. It’s not shocking living every day knowing you’re dying so it wasn’t much more of an acceptance he got. Probably excepted more.. but when she many in your family already passed and with strong faith it’s not so scary of a leap.. but other times it’s soo scary and sad and then relief.. It’s God’s Will and being with everyone again will be amazing and then when others die we’ll all get to be together.

I’ve read old books through my alexa voice kindle I brave new ones vbut am not used to wanting to only reread others like when i watch tv and stick to cartoons and others im used to i have a schedule lights have been hurting more nausea movements I can’t keep a normal conversation offline and it’s getting harder online it’s easier to comment and post diff things then converse anymore cant handle noises like even background noise its like an erased head or a crayon scribbled one i can’t I’ve been so weak my body is reallly slow inside and out I even frow up what I can’t digest so it’s all spaced out even writing this seemed impossible but i did it thank you God and Jesus there’s times when I have more ability and strength but then i just remember when i was able it’s all just so confusing and complex

I’ve been on antibiotics I’m allergic to allof them so it didn’t go well even with allergic meds for my teeth infections n now i need more for a uti and i cant i cant its too much but it could spread through my body if it doesn’t work it’s all still spreading and if it comes to it I’ll choose to die instead of the hectic trials of keeping me alive with such more in the point it already hurts soo bad all the time from the jhd, I’m scared to lose my family and. Everything i have comforted here but i cry anyways for who I’m missing before I’m even passed away.. I know it won’t be missing them this bad In Heaven it’s just so reality lately, it’s so panic to live like your dying it’s so hard so just living as regular as possible well for me and. Trying to have more time with ones I usually don’t give so much to lately

Hoping I feel good on Christmas antibiotics start tomorrow for 10 days but I’ve been allergy to all antibiotics bad so Benadryls we’ll see what happens for my mouth infections i told him about pain vs pain and this is the best we can do to comfort wise I can’t handle more then that we’ll see how this goes its scary and sad but I’m just scared of more pain people don’t really get that he says tthe temperatures ive had over 2 weeks could be bacteria and it could get to hurt my heart valve but I can’t do surgery i just can’t it’s pain vs pain 🦋

Officially allergic to this one too, lots of Benadryl shitty oxegyn temperature super sick and dizzy no funOfficially allergic to this one too, lots of Benadryl shitty oxegyn temperature super sick and dizzy no fun

Update going off the antibiotics too allergy and makes mee too sick, so dizzy i fell bbackwards from it

I’ve watched Karli go through so much and never did I think I’d be able to relate to her later. She took the love faith hope everything when she died and it took so long to figure out how to get some back. Karli and Daddy took parts of us even in our 💕 and I miss and love them soo much and hope and pray to see them soon. Everything is turning into blank space as time goes by because they’re all leaving and dying too.. the point is juvenile Huntington’s disease is your own personal hell.. and I never thought I would understand the pain of it being so bad you want to scream and you cry even when you try to not let it break you symptom by symptom but there’s just so much limit. You screamed in stores in your stroller and i hear and see the things that make me want to crawl out of there too, and the dystonia and hard to breathe and I know I’m not 13 and I know I don’t have or want feeding tube just comfort and dying at home.. but i can relate to way too much now and it scares me that these symptoms are going to keep happening and I know God and Jesus are my rock and you said it yourself through your life how much Faith you had and you were so brave because I can’t always hold it. It’s scary , relief sometimes because i can be with yous sooner and thats scary too. The frustration of not being able to get it fixed or helped and the relief I know i pray I’ll be with yous abd Sabrael and Ellie and Sully and Grandma and Grandpa and soo many more.. i can relate to the frustration of trying to get understanding and losing it and being treated like a person and not a disease while still trying to fix it.. the loss of what you loved to do and pain of watching others do it.. the wanting to try it again and failing.. we’re not the same I know jhd wise and person wise but I understand more and more and Faith is the only thing you can truly hold onto that won’t leave or fail or ruin or anything because you said it to Keep Jesus in your heart ❤️ and you were so excited to go be on his lap.. just taking it moment by moment and thanks to you it’s easier then it would be without you I can’t even imagine it..

https://youtu.be/ur-sO14YnLA

At any moment everything can change time keeps moving forward.. my Grandma died yesterday.. i love and miss her she loved family she had a big family then went to every event she could she was supposed to never die, grief is too much everything seems to be that way she’s with gpa and karli and her son jack who died as a baby and she got to die at home where family grew up with her husband she loved Christmas the most i think to gather all the family around.. and her sassy tounge that she stuck out 😇💕