Jaceys JHD Journey~ My Story

*start on the bottom* wonderland style

and if this doesn’t help i have made a grumpy cat page jaceysjhdjourney.com/grumpy-cat/ very much needed

Happiest- guilty it’s sara bareilles but i love watching it the timing its so cool

Happier

Sadly True

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.

 

Amazing Heroine

Lacey Sturm has made a huge impact on my life along with Jamie from TWLOHA and Amy Lee

I guess i could post what i think i might be able to do still but would take extra added to get to do it basically a bucket list that might or might not get fulfilled i’ve done a lot in my life still though but these would be dreams..

Please don’t try to fulfill these a lot are very personal and i want to try to do them if you want you can ask me if you can help

• I want to take my niece to the tundra lodge and take her to build a bear and build a bear with her like karli did for me and go to chuck e cheese with her for lasting memories especially for her too
• I would love to have a fundraiser here with Virginia it obviously couldn’t be huge because of where we are but it’s my wish that we could do one together and the money could go straight to jhdkids needs none of this other confusing stuff no offense
• I would love to make a jhdkids video of all the kids with videos of them like the others instead of like mine
• I would love to get a picture from a jhdkid
• I would love someone to unblock my roku channel so i can watch the simpsons again lmao ok not as serious but needed
• I would love to help Lilli pick out her dog, and if not a dog then a fish at least
• I wish everyone would celebrate my mom’s birthday with us by sending her even a card
• I wish these seizures would go away and i wouldn’t need a wishes list
• I wish all of these kids would get better too!! and I wish all their dreams come true

i’ve gotten to do so many amazing things and wishes in my lifetime, 25 years so far, my mom already promised i could die at home and even though the idea of me being the

 

pictures at the service everyone wearing pajamas for me, my bedroom being empty my
family and furry kids and friends unable to speak to me again. At one point it freaks you out until the point where your adjusted enough to decide, what do i want as a last wish? i want it to be memorable i want it to be just right enough that i want it that bad and i want my family to be part of it, i’ve had a make a wish which led me to making videos and jhdkids and getting to help them through the grace of god and even if i don’t die right off, using what i can do what would i do? i have one gold chip from my life that i’ve earned by dying when i’m supposed to. How will I Use It?

I wish i could meet every jhdkid but i know i will someday, i wish i could take my niece to an epic indoor water park but i can’t travel that far, i wish i could travel to places and people i love and want to see but i can’t. I have to figure out what am i able to do can it happen.

I’m 25, almost died from juvenile huntington’s disease several times in my life so far, while my family watches that we remember watching my little princess karli belle pass away at only 13, and watch my daddy go from family man to deadly scary and he died in a nursing home 2 months after karli except he had adult huntington’s disease,

It is not ok that we lose the baby and father of the family 2 months apart, its not fair that my older sister is watching me go through this as she is positive for juvenile huntington’s disease, and getting symptoms worse while im dying and we lost our family, its not fair my mom becomes my 24/7 caregiver servant, it’s not okay, and living feeling the symptoms watching my little sister and dad progress and die, and then get sicker and sicker and watch my older sister get sicker too this is not okay, nothing in this insinuates its okay nothing!! and it’s not fair my niece from my healthy sister has to watch us this happen to her aunties never getting to have met her auntie karli, not okay and even if you don’t think of it the same as we do but your furry kids see it and try to help too and it hurts them too the losses hurt them so much and it hurts thinking about any of this because it shouldn’t exist its something that shouldn’t happen it’s a family torn apart by a monster that won’t stop until my mom loses her husband and 3 children, karli me and erica, karisas not at risk so neither is my niece and lillis dad isnt either all this pain ontop of the pain you physically and mentally get from the disease and the acts it makes us preform that a 25 year old would never regularly have happen to them, i do wonder if i wasn’t sick would i be a full functioning adult? it would all be so much more okay then this

i wish i could do those things, i think about what if my family was all together and healthy almost everyday, and i do worry about all the people i lose in my life.. alot of what people don’t understand about jhd is how much it takes you away, i used to be compassionate and love hugs and now im the complete opposite they physically hurt because of my sensory disorder, and i can’t see around my mind for the completely compassionate part anymore either, thoughts even aren’t mine anymore i ignore them. One of the most confusing things in jhd is the thought of ages, they freeze at a certain age, you can say age of onset or diagnosis or anything but it doesnt change that even though your growing and can do more stuff doesnt mean your mind is the same way, i’m more of a child then an adult. Mom says shes raising two teenagers because me and erica are both sick and stuck at ages. You might not understand it but i prefer shirley temple and cartoon movies and childrens books more then things i cant understand as easily. You can think of us at any age we are but you can’t see inside of us. That says it for the whole jhd population.