Unchanging

This is very odd but everything in it is not normal, it is different in a way that is important for me for you to see what i say.. ever since i was little hd and jhd have been present in my life, so from person to person to thoughts behaviors symptoms beliefs ages moments everything changed me, who you see now is not even the true me because even i see and feel i am not who i am and as much as its wished i cannot be the person i am because of how changed it’s made me, I want you to know that before i was sick when i was sick during this when i did this now i look like this im still in here and even though everything changes i’m still here and i really don’t want to be known as who i was before or who i became or anything of the sort, i want to be me and noone else to you all i’m blessed i can say that and am sorry to know so many will not believe my wording as much as i can say.. all i can really do is ask you dont listen to different things you dont look at everything you just look at me for me even with the changes even with different ages i want to be seen as Jacey please i’m jacey mukka 25 years old i have this but i’m not this and i’ve been through that been im not who i was then i just am who i am from the start to the end. you can hate me or love me or blame me or ignore me, i truly believe that when you look into someone they’ll always be who they are no matter what

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Nothingness

so many seizures the last one really threw me over into the spiral of black nothingness when your so exhausted out you literally go into this dark cant see or hear or think just needing everything to be nothing and you fall alseep it doesnt seem to be a bad perk of them yet.. Lilli helped me at the lab today she watched them take blood and so we got her dora stickers she put them all the way up her arm like literally you couldnt see her entire arm she picked out this black cat downtown and once she found it you couldnt get her to let go her littleness but huge imagination is amazing she can make something out of a small piece of paper blows my mind how can our world be so full of basically made up stuff we think we have to follow yet have from the start such incredible things, i think society making us have to have an education seems a great thing in this world, but if you look at it it’s like they’re taking up most your life because it’s against the law to not go to school, doesnt that make it a prison? in both dont they reward good behavior and keep you longer if your bad

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Relief

the relief from it is a gift from God any relief basically is a huge blessing and i’m glad for that and when you find a way to make something anything in your life better for someone else it makes it worth it and i also believe that’s an ability God gave too to be able to make something better in a meaningful way

Seizures

is sick of these seizures they won’t leave me alone im constantly in pain it’s a blessing though that God lets me help these jhdkids i come on here and see their faces and fall in love all over again it’s worth it to just post one more makes life up to the point feel more worth it I can’t resist them look at their faces!!
https://www.facebook.com/curejhdkids/
and if you don’t know what jhd is or don’t know about these jhdkids, if you want their stories more pictures go to their pages on the website jhdkids.com

it’s filled with facts myths stories what you should know straight from the community i’m very blessed to know them 

Coaster Disaster

Riding a roller coaster for a long time it goes up and then downn then up and downn worse and worse you lose who you love you lose your abilities your pain levels highten and you don’t even know when you’re gong to actually die. Unpredictable but so downhill. God and Jesus are always there for you in life and death. It’s still so incredibly hard. The doctors and medicine the equipment and symptoms new and worse bad news.  When you’re wheeled into a store after this its like the shock is so hard you cant see anything that changes anything. It just keeps going.

Ouch

you know when your body parts fall asleep and it hurts, well my body has come to hurt the whole thing at the touch soo bad but wont stop yet and cant live without doing things so its suffer or lay hurting bored so consider this education, yes it hurts so bad but it exists neurological