1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love
i miss meghan and shane and judy and carissa and cory aidan karissa meghan o donnell crista princess karli belle talking to them seeing them made it worth it not as unreal as everything seems in the community now true realism i miss them soo much if time could pause..
by Lizzie Scott Is an amazing book and true story about a foster carer not wanting to take in disabled children but forced to take in a baby girl shaken in rage by her father and mother unable to care for her.. she fits for her disabilities does everything she needs hospital stays tube feedings they fall in love with her they get everything set up to keep her and she dies in her arms at 2 years old.. letting the mother know her daughter died in her arms and not an abusive fathers. It’s a beautiful story of how she opens her heart and tells everyone to not be afraid to take in terminally ill children God had an amazing plan for that little girl ❤
Love This
A price is what you pay.. Like writing this while lying on the floor seizures because i need to, a price I’ll probably get sicker The price..
Going for a rest by the lake unattended almost death but now limitations
Even thinking about contacting old friends leads to high anxiety fear physical illness then the anxiety and ocd of them writing back if they even intend to
Going to the doctors price one the lights give my body illusion of extreme flu nauseous due to photosensitivity even with off or dimmed, same with lights at home only certain ones price two waking up that early causes extreme nausea price 3 pick and choose because you’ll probably get something worse because shitty immune systems
Staying in a hotel i can’t sleep extremely anxious also and physically ill
Keep in mind I’m in constant pain so juvenile huntingtons disease is literally your own personal hell
Traveling involves travel sickness many seizures pain everywhere nauseous dizzy not worth it not even two hours
All these things you can’t see
Sitting up for too long my body alignment is off i get extremely stomach and back sick and need a heated bed preferably mine
Rock picking the balanceing and pain it all brings like walks etc it will come on later all of the pain sounds lights
Large groups parties can’t even do Christmas as we used to at gmas for a long time now, think of noises heightened meshing and lights turned into strobe lights and the inability to even understand what people are saying
Conversations mostly not online I can’t handle my mind has a ridge that causes pain even trying to understand sometimes easiest things
Playing piano legos puzzles sign language i knew it all now too complex even knowing people I don’t know 3/4 s anymore
You choose
Do I want to eat this to later have heart teeth stomach pain even just coolaid
The mentality of trying to calm down alone is as you already know important especially in this situation
Walking stores park visiting it leads to sleep schedule mess up even worse than it already is yes major pain involved
Now remember these seizures full or very distressing movement events leading into all different position aweful breathing often can’t breathe painful stiffness nails digging in skin and still progressive
Having jhd, losing everything and eventually everyone even if they just decided to leave while you have no choice but to stare at death because they don’t have to right now easier to remember then help for most why waste their time
Are you waiting to try to sleep a way you won’t regret or do you just not care as long as you get sleep
Using your body it still dislocates twists up it feels like if your hand id open and it closes it it oddly feels better it creates a type of pain like extremely uncomfortable aweful with it open i pay the price of closing them maybe I’ll be stuck faster but I can’t handle the pain or lack of sleep
Often just being on electronics even just a phone makes you physically ill
It can do whatever the hell it wants to even bringing you into almost death to life situations karli did it a lot
One of the hardest is acception understanding not judging not running away and doctors and research learning about Jhd how to help learning the information and passing it on and trust in all of this it’s extremely important
This is only part of what is but I can’t articulate more right now thank God for autofill
Noone is the same but the prices they pay are unique don’t underestimate this disease in children you shouldn’t have to watch a child die and the parent who gave it to them and the others with it just even watching it you pain a high price but they’re worth it so cure them and get them more help please
Please Share As Far As You Can I Know I Have Been Blessed To Be By So Many
This is a great video but there are kids with juvenile huntington’s disease younger then even teens and it’s more often then you think it could be misdiagnosed as just hd, there’s even a little boy who sadly passed away at only 4 years old. I love what he says but please don’t forget these kids and the website even still only has a small part of the kids
jhdkids.com
6 years
http://www.blogtalkradio.com/help4hd/2011/08/08/help-4-jhd-premier-with
7 years
and no jhdkids is now an only for the kids no research involved like there used to be when created now its just purely for the jhdkids remembering reading understanding learning etc
jhd seems to take away abilities and give them back but at one point when they get to the point of staying and progressing and not going away.. i used to get weak soo bad and then better but then i stopped getting better from it, i used to have full memory thinking, now very short term memory cant remember so much its sad and cant think as much so bad it hurts.. it took away my ability to think any higher then what it wants and it physically hurts trying to go past the limits, something people probably don’t want to admit when they’re dying from this.. i grew up to 25 but never truly grew to 25 mentally always stayed more diagnosis age, now i’m going lower and lower, it’s sort of like benjamin button but without the ability to be so much higher then all of this like he was.. i dont know how long i’ll be able to process this much and well, i guess we’ll see when i go from writing paragraphs to abc blocks and yes it is very sad i never truly expected to go down from me to even more child to child range of thinking and now.. will i still be me, will i be more me, will i be less me, will i still be the same to people it seems i’m able to think better through writing on here then regularly even layering blankets or anything could are making me physically ill from trying to process them so i put on the simpsons i just simplify i have to i’d prefer cartoons and toys anyways i dont think i’ve ever grown out of it because never have i truly been ’25’ or out of my teens and less it seems
jhd knows you like it exists and hurts you where it hurts the most, and makes it almost impossible to get the help you need, it seems almost planned that way.. for example it changes your immune system so you get sick and the disease makes it worse then normal but i’m allergic to antibiotics and only one kind of tylenol helps and it lasts forever.. you require er visits and hospital doctor stuff but your photosensitive so the lights make you feel like you have the flu no matter how much nausea medicine they give your throwing up almost the entire time from nausea.. jhd to begin with is hard to figure out how to help, it doesn’t help that it knows how to keep you from things that actually help, like making sure the seizing is safe enough in different forms to not be bad past 5 minutes so it can last sooo long and trap you and you can’t call for help and you can feel all of it, silent torture just like how my bodys been hurting soo bad non stop lately and it could easily be the disease so it wont go away ugh
Jaceys JHD Journey~ My Story 