Jaceys JHD Journey~ My Story

I went for a walk, impressive right, and met a butterfly and a deer, the deer just ran away but the butterfly was flying around and was friendly and landed on a dandelion in front of me i could see its wings and watch it take from the flower then it flew away again, i found a lot of pretty places by the lake that you can just sit by some cliffs some paths, the sun made it sparkle and you can see across the other side

this is my favorite spot all unique all hard to find

 

I’m just really trying to survive this breath by breath each a victory, everyone looks up to me as an inspiration and I often think they just want to see that out of me and not see all of me. I get lectured about sleep schedule me not wanting a cure but i do want the cure for everyone else and how like so many people I should be more proactive do more things. Yet none of these people get that i’m doing as much as I can and I do what I can when I can. There’s nothing wrong with having a seizure in bed instead of on the floor which is what happens most the times I get up and walk across to the kitchen, other days I can go for walks to the lake. It’s very odd and I can’t change my schedule if I tried. I’m lucky I get so much sleep. These muscle seizures aren’t anything I can control and if I could they wouldn’t exist. This disease is so complicated you couldn’t straighten it out if you tried, which I wish more people would so we could get something.

but I feel like this

I went to the clinic to check for uti because it hurts sooo bad it turns out im clean of everything not even infection, this means the juvenile huntington’s disease muscle spasms dystonia whatever the hell it wants to be is causing more pain in my progression as if i didn’t have enough already

The vet says Sabrael has a slight heart murmur, i’m just getting him things to make him comfortable i’m worried he’s lived my life with me I got him when I was diagnosed, please pray for him. I really am just too paranoid maybe he doesn’t have symptoms other then the vet check and the stiff bloated chest/belly. Not even coughing. I’m worried it’ll progress but when it comes to that then we’ll handle it otherwise i’m keeping him comfortable in his old age ❤

This Artist Is Amazing

I’ve been thinking a lot about the definition of family. Who makes up a family, who can be in your family? What role does each person take. You’d think it was easy to figure out until you try to explain it all and you get lost. I know there’s a lot of sayings out there.

Ohana means family, family means nobody gets left behind or forgotten, family is where home is but what happens when family doesn’t stay in the same place? Family Is Forever because of the never ending love and understanding and special memories that flow through it.

Here’s what i’ve come up with. When I see family I see Love. Unconditional no matter what you do or say they will always be there, they say because they have to be, but the truth is they want to be. Family is a blessing big or small blood or not. I can’t have kids so my kids have feathers scales and fur. I also see those amazing jhdkids and their families having such a strong connection and Love and understanding that I know those kids even if I have never met them. I consider them Family. I can’t have kids but my life has been and is still filled with them. Your family members might be mean or seem to hate you but we all know that when it all comes down to it you look in them and you see them.

Family makes you mad moves very far away lives very close you might not know them but they exist through you and you can’t get rid of that.

With my life being so tight knit when it comes to my family because of huntington’s disease, passing away, being strong trying to keep faith hope love every breath is another victory. Doctors hospitals er visits scary happy sad alone together. Family is unconditional love that you can’t escape a trust that isn’t always said and a wanting of being with them, to them they love who you are how you are no matter what and you are you and noone else. Noone else knows you the way family can pin you.

 

I share the santa photo of my family so much because I tried forever to get a family photo and it’s the one photo I managed to get. It’s really hard to get Daddy in family photos and get everyone to sit still.

The seizing gets worse 

If you go to my jhdvlogger on YouTube you can literally see it month by month worsening this is from today 

In 48 hours i go from can’t move to can’t stop moving and back

I had to stay siff straight flat on back arms straight still next to side waiting for excruciating pain to stop enough to fall asleep before it starts again jhd stomach aches also progressive are the worst along with the flu and jhd where you can’t stop moving, sometimes its being too completely stiff or seizing or feeling every nerve in your body and they all hurt to the touch or your body doesn’t realize it’s there yet these are some of the ways you can’t move or even sometimes just a blink hurts too bad for everything I recommend benadryl or whatever increases sleep and pain meds don’t work so you get creative i can only use generic red tylenol from family dollar and as you can guess foods and drink types become very selective 

I love all of these kids and their families 

All for being a part of my life

I’ve been prepared for it for awhile now while i was able to do the certain things I’ve had to do. FYI it’s only pajamas at my service.. I had it pinned but it’s like when I was diagnosed ready but I felt nothing like ready

Everyone dies I’ve seen so much faith truly real I’m not scared because even when Daddy was dying he seen Karli. I know God and Jesus are through life and death. 

My symptoms are becoming very terrible and i could die at anytime. Right nowthese muscle spasms making me inhale makes my first fear pneumonia.. But it could still be anything before then.. Amazing friends amazing family amazing community.. I get through it.. I can admit I’m still scared but at least I made it to Gods time and it wasn’t alone 

I know I need this and want it to finally be over but and one of the hardest parts to get people to accept is when you have to look death straight in front of you. It’s still scary it hurts i wonder if i did everything if everyone knows how much I love and appreciate everything absolutely everything and my puppies know how much I love them even when they can’t see me the same way anymore 

I don’t have a clue how long this damn disease is going to give me and we don’t like to think of it but there’s no escaping I’ll finally be free and the symptoms that are so scary and getting worse.. I need to figure out how to get through what I have left because if it’s short I have things to do no matter how limited I’ve become, first step is to figure out how to stop crying and take it in

I do know I’d do it all over again if I got to be part of my family and the people I’ve met and love. As you can tell even by this website I’ve lived an amazing life with so much love in it

Love,

-Jacey-

This disease may make you have to make really hard choices, choices people don’t understand until they get there.. no matter how badly it hurts you if it helps them its worth it i’ve had to make a lot of choices in life to spare myself, i think the decision to know this disease what it does and spare someone else no matter how hard it is you need to decide, i might’ve made the wrong choice but something in me is telling me i did the right thing, i can only bless the roads they’ve set out on and pray everything turns out okay