Jaceys JHD Journey~ My Story

Jhd sux

Weak sick bed more rail seizures stuck in diff positions weird sleep cant go on fb mom jhsdkid updates hard to breath frow up frusterated ty auto fill virus Jhd weather idk movements weird twisting def of jhd atm hopefully improve lots drama up n down floor too ironic collapse unable work body it does wat wants miss u all love lots would write more but on ipad cant look at comp too sick only on my website poster rite now ugh damn disease damn sick ills all of em now try sleep gain wif pups pretty birdy n fish 2left the pink. Ones n hoover so three very blessed n my fam even whn its broken hope for better nite all

I got my mini max today!! Sooo excited!!

Lissa Carter Etheridge Gave Him To Me!! The Money That’s Raised Goes To JHD.. Here’s Her Facebook Link Just Click On It

Lissa’s Facebook

Today I have been working on my New Year’s resolution! My resolution is to promote Huntington Disease awareness and Juvenile huntingtons disease awareness. I am looking for people who would like to help by adopting a hound or turtle and posting pictures or yours in interesting places. The idea came from Hounds 4 Huntington. Each Sybil the hound or Max the turtle will have a tag with links in where to find information about this horrible disease.

Please Put Your Email Or A Page Link To Adopting Max’s Below Lissa If You See This, Thank You Lots!!!!

My dreams apparently read my thoughts of things I didn’t even think was such a big issue..

I was forced into the military off to go to a war in a boat there were huge waves in the boat threatened lives each time I have no idea who all the people i was with were there was a boat going farther than us and we were taking our time making stops food and water limited sort of like slavery every time one of my fur kids appeared they took them and put them somewhere unsafe it hurt so much the farther we got the worse the weather and threat of death

Its easy to understand dying is way harder then you can see.. Jhd has me as a slave when I die i lose my kids progression makes the weather worse and I could die at any time and there’s kids dying faster than me

Im not used to my heart physically hurting its been days now sweating eyes tearing sudden extreme leg pain today it was feeling like passing out its confusing but if I do have a heart attack at least it’ll be at home in bed where i want it thats why im not allowed to go to the hospital apparently because I chose a dnr and to die comfortabley at home there’s a lot of people i wish would talk to me in understanding but life isn’t a science or ideal for anyone with my luck this will stay another symptom and add on to the hours of seizures i cant even ask for help during I can’t control them

So much scary stuff in life and an entire year in front of us, not knowing whats going to happen, this is what i try to focus on when i get stuck in hospitals all this other stuff my mom has to hold me still because my arms don’t stay still the whole time. Imagine clenching your fist as tight as possible imagine that everywhere and putting an iv in it. Karli such a sweet brave girl, my Dad so sweet inside we couldn’t see straight off but he was in there.. and everyone who’s starting or whos been going through it all too. I picture Karli with her build a bear bunny faith she got while she was in the hospital. She held on to that bunny and another one named hope. They even gave faith a feeding tube with Karli! I picture the photo of me holding on to mom as tight as i can because they’re insterting ivs, i was in the er once and they had to do it like 12 times because i was in dystonic movement seizure stuff i needed extra meds for, that’s when you think our god is an awesome god he reigns from heaven above with wisdom power and love our god is an awesome god… Yes this is all very scary and sad and often wayy to lonely. I’m not sure why I have to go through this God must have a heck of a plan. God’s Will. My favorite video of this song.

It seems like looking into an empty timeline of what could happen and will happen etc.. it’s scary. Lilli’s mom agreed we could take Lilli for the night and she’s so energetic creative imaginative she makes it not as scary and sad as it could be, we even went to the birthday party isle and got party favors she’s good at picking things out. I’m going to make a new years resolution, get the juvenile huntingtons disease information as far as possible and help the jhdkids as much as possible. I’m already working on valentines which will take me until february to label decorate address i already found the perfect ones, this time i’m limited to the US though. Sadly not as many kids either. I still have a valentine i was going to send out right before Bre’don died for him, so i just keep it. I don’t need help i’ve got everything i need. Also i want to keep improvising to work with what my hands are doing my heads not saying my confusion a lot that might make my jhdkids goal harder but i can try right

When able to dream I usually have 2 types of dreams, where my little sister karli who passed away from jhd at 13 or my dad died from hd are dying or theres someone after only them which seems self describable but the other type is killing myself over and over theres many meanings to this theres: To dream that you commit suicide represents self-imposed failure. It may also represent a desire to escape from a waking life situation. You may also have intense guilt, regret, or feelings of hopelessness in some area of your life. You may feel like surrendering to your problems or giving up fighting. Feelings about self-defeat, dropping out, or giving up. and theres: People who have these “suicidal” thoughts and feelings are experiencing the inner prompting that it is now time to CHOOSE A NEW WAY OF BEING IN THE WORLD, (and if they couldn’t actually accomplish this transformation, they wouldn’t even remember these “dreams” in the first place!) Mistaken literalism is the greatest tragedy when it comes to suicidal thoughts and feelings – by all means, “kill yourself”, but do not harm your body! I don’t believe in the big change getting rid of addiction theory but the desire to escape from a waking life situation makes sense. I like the idea of dying inside more then outside you can die once outside but you can die as many times as you want inside, and it makes a lot of sense of what i’ve been doing.

Being rescued in dreams is interpreted to: being rescued Feeling that you need help or need to be rescued—physically, mentally or emotionally Receiving good will or support from others—perhaps because this has happened recently, or you wish it would The idea of letting others rescue you or clean up your messes too often The idea that you could benefit by being more open to help from others Consider who is rescuing whom, and the possible parallels with your feelings about your real life right now.  It makes sense that the people that are there for me in a good way recently would be saving me.

There’s also codependent is when your rescued to a vehicle in a codependent relationship Crisis or emergency. A source of help. Someone or something coming to the rescue, or a person whom you feel tends to rescue others, or who you feel is codependent. This makes sense as in so many relationships i can’t leave but make me feel one sided.

https://psychcentral.com/lib/symptoms-of-codependency/

The Lord let me make a jhdkids video for Christmas with our jhdkid angels i’m so excited that i got to put my all into it because im so not used to being able to do anything so i figured out a wreath represents the thorn crown they put on jesus’ head but i had to look up the tree part:

A Christmas tree is a decorated tree, usually an evergreen conifer such as spruce, pine, or fir or an artificial tree of similar appearance, associated with the celebration of Christmas. … An angel or star might be placed at the top of the tree to represent the Angel Gabriel or the Star of Bethlehem from the Nativity.

I love knowing Christmas is from Christ a baby born to us to save us all instead of a guy in a red suit

Princess Karli Belle Daddy Sully i miss everyone sooo much and love them and remember them even if it hurts really bad little things remind me often but i imagine it and remember it like i can almost touch it until it disapears

I think i’ve finished the 1000 piece puzzle due to inability to sleep, i couldnt sleep until 8am no matter how much i tried and then i stayed awake all day and im still awake, think the jhd is hitting me more in the insomnia area no matter the meds that dont help

Please just give them back give us a turn or at least take me too now.