Jaceys JHD Journey~ My Story

Life is full of expectations, hopes that rise you up, but they don’t rise you up they also shatter you. They can be good and bad. I prefer to try to stay away from them so there’s no risks, i’m starting to work on it, again. There’s so much in life you can blame for everything and it’s all going to come down to life being unfair. But I still Expect you to try to help because you are someone and you can see something wrong and watch it forever or you can do something about it.

The muscle spasms have been hitting me hard lately especially when i have bout of breathing inwards instead of outwards and you can literally see the spasms in my stomach  it hurts so bad and then i choke and breath and choke and eventually it just sort of snaps off to me its a concern basically because its newly progressed like everything else that keeps getting worse even when you dont think it can yet i’m still here.

this is how my mornings starting, my 15th seizure another bead to add

i am drenched in my own sweat from siezing so bad so long and yes im typing this now im so frusterateddd im sick of this i should be getting iv fluids

that then triggered me into feel aweful about everything but i did get to visit Skyphiarella

i couldnt move my body this morning completely locked and real seizures and then just my left side was locked stuck wouldnt open for a long time but there was someone to support me all day i very much appreciate it and its much needed lol

i really miss Virginia she’s had a huge impact on my life and right now i’m on seizure 9 in 3 days and i dreamt she visited and i wish it was real you can help us:

https://www.gofundme.com/help-virginia-and-jacey-reunite

The name is kind of ironic, i get to stay home from it and that is completely unfair seeing as everyone around me is going to it. It would be just the jhd but it’s also a virus amping up symptoms so i’d be on the ground seizing most the time, that is how fair life is. Karli used to love the fairs, the giant blow up slide shed go on over and over the ponies the cars you drive the petting zoo part she loved it. I’m sure she doesn’t miss it where she is now of course, and i guess i don’t just miss it, i just want to be there there’s a difference right? like circus’ and 4th of July stuff a lot of Christmas things even family Christmas at a chosen place where everyone meets and the etc.. it’s kind of even odder seeing my niece do this stuff too, i can’t tell how i feel about it i love my niece like crazy and i miss my sister like crazy too

karli going down the slide over and over

JHD makes you very dehydrated and add on the seizure muscle jerking spasming activity makes it worse and makes you sick so if i get any more dehydrated I have to go in and get an IV, which isn’t all bad it makes you feel better by a lot. I lost like 7 pounds moderately fast, we accounted for the jacket and the boots that i wore last time it came down to 7 lol.. i have a virus also leaving me with a temp 100 and amps up the jhd symptoms so bad that my anxiety is through the roof at a full 8 pain level so i’ve been trying to sleep it off with benadryl, hero really helped and so did the words of a great friend.

Don’t forget to help the chimps that help us!!