It’s been so hard handling the losses like an emptiness all around you and in you.. comfort in God and Jesus, pain of not having everyone here for Christmas. I came home from a trip through Walmart rare but great. Saddened by the baby that died from juvenile huntington’s disease, Elizabeth was 7 years old!!!! 7!!!! Beautiful Angel But So Many Prayers To Her Family It’s So Much I Don’t Know Whether To Be Angry About It Sad but i’ve been Both. 7 years old.

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waking up

woke up went to the bathroom fall on the floor muscle seizure throw in lung stomach chest spasms then out of muscle seizure into just the shitty breathing trying to even itself out and then full out reg seizure that lasts over 20 min i was on the floor for over 40 minutes if this isn’t hell idk what is karli and daddy and sabrael arent here i’m going through this and still know i have more to look forward to plus abandonment of people who used to legit care and decided i wasnt worth it now im in bed hurting soo bad mentally and physically something i can’t wrap my head around i’ve been trying for over a year and it hurts even when i try to ignore it, how can you be so important and then not matter at all, how can you believe in all this stuff for them to shatter you anyways i don’t know how to try to figure it out myself anymore. I wish they cared about me as much as i love them. I don’t even know how to have friends anymore.


Mind keeps getting wiped from all this shi* it’s throwing at me good thing my Mom Jane’s here to remind me what I forget and keep me in bed or on the floor or couch etc( i do walk when i can though) so i don’t fall as much, otherwise i’d be even more crazy lol seizures hurt more when you find your more hurt later not that everything else doesn’t anyways.. makes me mad sad holding onto faith and walking the steps Jesus guides me on the path ahead of me i couldn’t do it otherwise this is scary as heck even though i’m pretty sure it’s a test on everyone it looks odd but feels different then it looks it’s confusing and cruel. I’m finding knowing others exist that did get through this comforting, sad though that they’re sick. Like 2 seizures a day lately weak or strong or in between it varies, one of the scariest is not knowing when it’ll actually kill me. Years, months, days.. so dam* confusing all of it ‘rare’ ugh

New Levels

More seizures stomach pain dizziness dystonia weak shakiness hurts to look at electronics inability to stay out bed for long legs giving out all over again, and still managing to partially fall out of bed that has rails and stuffed animals, talent.. not used to this new level of issues..


The Edge

it’s all just one too many over the edge i just want out so bad and everythings, i can’t i have to get to dying in God’s will but this is past cruel I HATE THIS


It’s the yoop so we were always armed in heavy halloween outfits, it used to be fun when we were kids, we had vans a lot so when Karli got too sick i’d take two bags and show them she was in the van, it was somewhat stricter back then or maybe its where we went? to be honest i didn’t feel comfortable doing it, but it’s improvision for her, i didn’t know until i got sick how rational it really was and how it wasn’t that big of a deal. 

There’s a lot of kids out together different outfits, and all i want is a little girl, to be healthy enough to do all of that with her. There’s a lot of dreams i have at different points of life mainly because i can’t do them when i dream it. It should be a family, not a stupid disease. 

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