Journal

April 26, 2015 11:15pm,

mom says i’m nearing the end of middle stage means beginning of end stages, she says i get closer everyday, it’s scary thinking that being this weak because of jhd god helps so much though its amazing, i gave up so much through my life and being too weak to be on here more is unfortunate but i’ve been sick for a blessed long time some don’t get i take this on graciously as i can i even set up roku with all my fave movies over 350 lol love yous

So Cute!!


April 22, 2015 2:46pm, Tons of seizures last night during my sleep, i have an amazing best friend!! She’s an angel and she’s always there and truly amazing!! I got to fly and go through different places and see the positivity they have made compared to the negativity we have made in this world I hope I get to go there again someday

April 12, 2015 11:08pm, idk why im so sick i have virus sores still i’m waiting for my monthly time i had seizure during the night it’s been storming guess it’s just luck that i have severe headaches and earaches

April 2, 2015 10:07 pm, went to the store without dottie today, it felt like everyone was staring i got so nervous and it makes my movements worse, thank you lord for dottie and sabrael and everyone and everything….

i’ve been extremely depressed lately and pure pschycotic at moments.. more flu symptoms again too

April 1, 2015 12:10 am, i feel like hitting my head against the wall over and over, it feels like it has restless leg syndrom except my head.. the speech app works great on the device jonathan sent me.. it gives me flash backs of when karli used to tell us about her, except now it’s me writing it in to use

March 29, 2015 12:27 am, the flu has died down a lot and i haven’t gone to the bathroom in officially this is my 5th day it just doesn’t feel like i have to go..

i don’t understand, i dont get why the death of me would be the life of them does that make sense, i mean im not sure how long until god takes me but really, it’s gonna be what makes them wake up too late and that makes me worried about them, i think i’m really good at scaring them when they shouldn’t be i don’t mean to they shouldn’t be scared of me

March 25, 2015 6;09 pm , sick again ..my watch works now mom fixed the battery, if only i could figure out how to get the alarm to stop going off lol what i love about jhd, you get the worst of diseases and disorders you don’t have, just symptoms of them, you get the worst of virus and everything else, when you don’t have the virus etc.. i’m soo sick again, are you counting, i am.. 3 in the past 2 days i’ve been this sick to my stomach with flu like symptoms for 10 days now

How are dogs service dogs, when I was little I was so desperate for a dog I would cry when I couldn’t keep one for the day, my uncle had lab puppies and I needed to keep one for the day so bad i just kept crying lab puppies and me (2)

March 25, 2015 5:45 am here i am sick  again extreme pain just like yesterday morning, i can you use arms to eat again now though!! it started with trying soup and went on.. so it lasted a few days but now i can use it again!!

March 21, 2015 2:23 pm flu again throwing up last night with cold chills, arm still doesnt know how to eat, i remember i was in school i passed out hit my head on a desk and turned blue.. they didn’t call an ambulance.. but when i had the dystonia in my legs and arms(not even close to as bad as it is now) they were thinking of calling one.. i don’t turn blue from not eating it was my heart

March 17, 2015 2:19 am feels like i have the flu a lot, i’m so sick of being sick the pain gets so hard to handle. I’m Alive. Breathing Air. I sat in a store wondering what to buy and what i wanted to buy was something to make me feel better, but there wasn’t anything to do that. I’m Sick. The seizure i had awhile ago that made me post ictal apparently the confusion i felt is reoccuring because my brains trying to heal but it can only heal to a certain degree, and it’s very slow healing. So it permanently scarred me, which is scary, permanent, iriversable things are scary. I got to talk to an amazing person today who could actually teach me something, us something, and that’s incredible considering how much we’ve been through. I sewed more of Dottie’s harness to fit her so much my fingers bled, worth it though. The kids scrapbook is here so I don’t have to go online to see them. I’m using Erica’s alarm button for now, mine is hidden in my stuff somewhere it fell off the necklace part of it, what happens when you wear something too long. Things break. I’ve been going over shouldn’t should’ve couldn’t all these words that are past.. i truly believe everything that’s meant to be will be and that’s happened is meant to happen.  That God winks with your fave song coming on, the one thing you’ve been looking for shows up, amazing things. Erica’s dvd player opened by itself, even when it’s turned off. Jan’s really nice, she promised she’d never give up on the jhdkids, that’s something really important. I can’t eat from a dish only by hand.. i had a confusion spell and now my brain knows how but my arm and hand on my right side don’t know how to. Fingerfoods now. Hopefully it’ll be better soon. Mom feeds my fish for me which is sad because i can’t even feed my fish, i do love watching them though. God and Jesus have given me the ability to help people in my life, i’m very blessed. I’m not as happy and cheerful and a lot of people whoo are sick and were sick, but i’m still alive and that’s amazing.

February 6, 2015 9:35 pm i get stuck in my body and can’t get out and it’s like knocking on a door that won’t open, sending the signals to open my hands that stay closed, makes me nauseated trying to send signals like that.. i have a uti and i’m allergic to the antibiotic so i’m on a ton of benadryl.. i’ve been eating mostly soup but erica makes food and cupcakes, and mom should be making a acake tonighttttt the only kind i can eat.. i download the kindle app, it’s like turning on a keyboard or trying flashcards.. torture i miss it so much

January 28, 2015 2:52 pm still sick making the seizures worse, the theory of everything looks really good i think i’ll watch it with mom maybe.. erica made breakfast strawberry shortcake cupcakes hum.. i’m so gonna regret it later but it’s sooo worth it.. Sabrael’s still limping and for the short time his meds helped i still have hope they’ll work again, maybe they’re working and only bitty knows that and that’s why he loves taking it every morning

January 27, 215 5:48 pm I’m legitimatelly sick this time, temperature and all, mom wanted to put me in the shower but i already have the chills from being sick.. putting jhd in words is hard but i think Chris really nailed it.. one of the kids is really dying and then meaghan fractured her skull, i love these kids, i got myself into this, falling in love with them all and it’s worth it.. even if it breaks my heart every once n a while

chris rap 2

January 25, 2015 5:50 pm i got to cut 2 of Dottie’s nails so far lol i’m uploading, i’d say like a informative update of me and advice. I made the choice to stay off facebook more often and stay on here more often, i think it’ll be good. Roxi’s having bad seizures. We ordered her a new vest and patch beginning of January, i’m mad it’s not here yet.

My new video you can’t read the Make-A-Wish stuff so i’ll share it here, again as you can tell it’s really old.. My first wish was a puppy originally but they figured why wish for something you can get, bam my Sabrael Bitty Boy I’ve had him since I was diagnosed he’s like 8.. and i was symptomatic clinacally diagnosed even back at Karli’s Make-A-Wish I did a sibling mri with her and they’re like, they’re both sick with jhd!!

12 13

January 24, 2015 12:58 am, wow it’s 2015.. that’s crazy i didn’t think i’d make it to a new year.. When you get so sick with jhd stomach aches ontop of everything else, you’re in a high pain 10 level, you start to think they could live without you they’ll make it.. until you realize you have no choice but to stay and be strong.. i’m not strong i just have no choice but to breathe until God and Jesus decide it’s time for me to stop I’ve gotta admit, this community the ability to be on here the family i’m in the kids i get to see I’m Very Blessed

so i’m in even more pain because my muscles by my lungs are weakening and it’s hard to breath all the way.. i hope i can get a tank for it not to hurt anymore, but i don’t know if i trust hopeful things like that anymore after so much disapointment from medical stuff i’m probably getting enough oxegyn it just hurts anyways.. like these dam* seizures

You have to get sicker to get better

I’m going through pictures and seeing how sick i look and it amazes me that sometimes the way i felt actually shone through my body’s trying to compensate not getting rescue meds all the time by giving me extreme depressional thoughts and impulses.. *sigh*

Sabrael is officially fixed. He’s doing so good without a cone on too. I put up a digital frame i hope i can keep it in my room without side effects.

Here’s Pics from when i was bullied a long time ago

abusive 2 abusive

January 17, 2015 4:41 pm they ask you when you go on new meds if you feel like yourself.. i don’t think i’ve truly felt like myself in many years, i think it was a lucky time frame that i actually felt like ‘myself’

December 25th, 2014 6:49 am extremely sick to my stomach feel like throwing up and going to the bathroom, the new med raised my nerves and it’s 3 hours until christmas at our house so i guess 3 hours isn’t so bad

December 7th, 2014 i’m going to be so sick later, i mean waking up from a nightmare at 7am.. by body won’t take that

December 5th, 2014 they think i can control the drooling and just swallow it but i can’t they don’t understand. Winter just left today and Jax is going tomorrow to their homes. Erica’s going to be so sad, but he’s going to help someone.

You open up your heart and share with them your world and thoughts and feelings, when you get deep enough.. i stop, because i know what people do when i tell them something important to me in that way, they use it against me.

Proverbs 21:23

Whoever keeps his mouth and his tongue keeps himself out of trouble.

It’s hard to talk less, but i’m trying.. it seems to make what i say even more important leading to even more pain if it’s criticized

December 1st, 2014 drooooolllliiiinnnggg just got a new bib, this drooling hurts my teeth, and it goes on and off it’s crazy.. my upper body strength seems lessening and i’m having more psycotic episodes, and i’m losing my ability to spell

just turned September 29, 2014 what if, teachers switched classes instead of the kids.. what if, time wasn’t a donation or something to make money off of.. what if we all lived in wonderland, would you want to be called your name, or would you want to be called a wonderian, what if instead of going to the bathroom when you feel like it all the time you only went when you didn’t feel like it.. what if dogs could see black and white pictures in color, when we only see them in black and white..

most of the kids got their books today only a few left to be delivered. They’re so cute their faces lighting up love them all!! thank you God and Jesus for allowing me to do this for them, for setting it up so i can help so many people. After like 3-4 days of not walking i was able to walk again, but my knees are killer now

just turned September 24, 2014 Having seizures all the time, they usually end up trapping me into sleep or waking me up, maybe that’s why i’m so weak and unable to walk and using my wheelchair again, vet tomorrow hope i can bring my babies, i’m not quite sure if this strength is even coming back, mom hasn’t been feeling good in awhile I hope she’s okay…

found martian child downtown, such a good movie can’t believe i forgot about it

Just turned July 23, 2014 done reading the last lecture, insightful sad and i couldn’t relate to a lot of it because it was mostly his jobs and his kids and wife but there’s a lot of amazing things said like how he mourns for his family having him die more then him dying, which is true it does hurt more a lot of the time, how a hand written thank you can be a sign of respect and how things are getting so complicated that a simple question can turn into a yes, even if it seems more complicated then that, which is very true

it wasn’t quite a guide on how to die, because he was in a way different situation, or how to live like him fully because again way different illnesses too, it just sucks i’m already starting to forget what i read.

July 31, 2014 If I turn on my phone or game during a movie or when you’re talking, it’s either very important or it’s easier to understand process and hear you when i’m not under the pressure of looking at you or just to understand and follow easier, if i’m observing from a distance, it gives me space to process it, and relieves the pressure of participating in something i’m not able to.. if I say I don’t feel good enough, I don’t, but if you ask me again in a few minutes I might change my mind. I’m more honest then dishonest. I sin. I’m forgiven already. Thank you Jesus and God!! If I start attacking i’m not embaressed of it i’m more worried that you’ll be scared, and in pain. I don’t fake symptoms. I do not hurt myself anymore. I cannot stand touching paper all the time, I don’t know how people can. When I need help I ask for it. If I notice something that should be known.. i’ll make it known. A cat can get a million views, but kids with jhd aren’t recognized like they should be, or treated as well as they should be by even doctors. Life is an hourglass. If I leave, don’t be offended i’m probably sick or can’t handle it or need processing time. I may look good or okay, but I feel far from it, it’s not okay until it’s the end, and it’s not the end. I handle being sick and grieving the best I can, I think trust is something I deserve. I may not act fighting or being brave against all odds, running in fundraisers, go out with friends, etc.. but I do the best I can, but you can still give me the benefit of the doubt and still ask. Don’t assume.

July 9, 2014 eeg soon.. there’s hope in the wanting that you’re waiting for, or hope in the waiting when you’re wanting

June 20, 2014 Doctors can’t help me with seizures, apparently it’s going to take time to feel better.. friend died, so sad.. she was in a house dress with a water bottle just like me and i don’t understand how she died.. i’m just so sick of the floor attacking so much and being sick and sicker and everything, people are emailing me and i feel bad because i can’t keep emailing them back i don’t feel good.. i miss Cathy she’s at convention, i can’t travel that far. Only 2 more parents to get a hold of. It drives me insane when people say, you look good, because I feel like shit all the time. Why don’t they say that, wow you look like shit?!

June 16, 2014 Seizures, my new thing apparently, 2 seizures last night, so sick nauseating soo bad but so glad i go unconscious, but when i do, i can’t get help.. but it feels so much better. Erica’s dog Roxi had a seizure tonight too. I can’t go to convention, a lot of things are marked can’t do on my bucket list. I wish i could go, but i can’t. Dottie’s getting new polka dots she loves it.

June 6, 2014 My body is still playing the same f’in game and i’m so sick, jump out of the usual, is becoming a usual thing. I used to laugh when the doctors asked me if I felt like killing myself. The idea of it was just silly. Not so silly anymore. I’m not going to do it. Keeping faith is how I survive. I have to win this one for them. I don’t know who to rely on anymore. God and Jesus always, they listen and care every moment of every second of even after I die, I just wish they could talk back. One day. I wish I could throw this disease aside and go see the fault in our stars. Have you ever felt your body go cold?

June 2, 2014 Every month it gets closer to my birthday in October. I find myself counting the months in my head june july august september, october, so scared. I believe, in pilots, people who see something that needs them and they take off into flight with it, even if you don’t believe your flight will make it, i’ve had the pleasure of meeting some amazing ones. I believe it will and no matter what happens everything’s meant to be the way it is and happen the way it does through faith. Sully went to heaven to be with Karli. I know he’s okay because I do see him and Karli together, with a fairly tall but not that tall figure, happy playing around the figure, not sure who it is yet. The thoughts in my head that just aren’t right that i’ve been looking for a solution for might have found something close, when a different thought comes in I just think hiccup and it stops, until I have to do it again, but it’s working. Another one of my huge fears, dying without Jane Paulsen having that study. It makes life seem so unsettled. I can feel the pain coming.. I have an idea of how it goes when it does this way. It’ll probably get intense hurting tears almost throwing up from the pain. It might be intense hurting rocking heat wrap tylenol, but let’s just pray it’s sleep. You may think of it as, cruel, horrifying, torture, a lesson, test of faith, I do pray when it gets bad and they do help me as much as they can, unnecisary, or maybe dramatic, pointless, a climb in life’s journey.. whatever you think of it as.. true seizures have started more frequent Two Of My Favorite Quotes: ‘Don’t be afraid of death; be afraid of an unlived life. You don’t have to live forever, you just have to live.’ -Tuck Everlasting “You must be the change you wish to see in the world.” – Mahatma Gandhi

May 19, 2014 That’s right 3 attacks in 2 days, 2 extreme a bunch of small jerking and 1 moderately normal, the aweful 2 had me on the floor twisting contorting unable to breath my hair becomes a mop cruel but it didn’t affect my eyes luckily that part is painful. We’re fixing up the house for more wheelchair accessibility. My room is turned so my wheelchair can go into the room to the bathroom and over to the computer table and the puzzle table and into the living room and kitchen. Mom’s putting the broda chair back in the living room so that I can go in it and sit in that chair because i attack so much more. Truthfully, I’m glad she’s putting it back, the floor hurts, and I never used to be a fan of the broda chair. New method on attacks, trying sugar.. I think it’ll help.

March 27, 2014 Guys are very confusing to me. I don’t date and never want to date. When they have arguments they are way scary. I guess it’s because of my Dad being so scary. The locks on every door and safety behind the locks, the emergency phones and the flashing lights we turn on for emergencys, the throwing and hurting and yelling and fighting and fu and the finger and everything, is so scary.. it must be ptsd, but guys are very odd to me.

March 18, 2014 Frozen comes in today!! my love, introducing new kids and making pages and updating them putting them on collages child of the week, if i was healthy i’d probably be in college or having fun with friends, i think God meant for me to love this and want to do this

March 17, 2014 So get this, I have a uti and am on antibiotics very small incriments allergy reasons, but I also have a virus on top of it! and seizures and attacks, that’s how it works it hits you with what it can you almost always are truly sick with something. I found my ring!! Well actually they showed it to me, dottie took a bracelet so I took it and put it elsewhere from her, and ellie rolled a bone and it headed off the bed and the ring fell off or out, i checked my covers a lot so it must’ve been secret, thank you Lord for the ring!!

March 15, 2014 Watching lifetime movie today with Mom. The fear of a serial killer.. is it the hidden identity, the pain they’ll put you through, the suddenness of your death.. or the fear you’ll feel the whole time. Truthfully i’d fear the unleft resolutions from the suddenty and the pain. We know God and Jesus are there for us always.. so why do we still get so afraid? I guess it’s just the human condition.

March 11, 2014 I’m not a plague, I just want to ditch it I don’t want to be with it, I’m in too deep with this disease, it hurts everyday and night, it hurts so bad to fight, but I fight everyday, because God wants it this way, it’s not my time to judge it and I won’t become it. I’m not a plague, I just want to drop this pain, walk away like it doesn’t exist and i’m free of this disease and it’ll all be ok then. I’m trapped in this cage, a body that doesn’t agree with my thoughts and my fears and continues to force me to change, worse and scarier almost everyday. It’s not ok and I don’t want to live it. It’s hard to face the truth of this pain that it’ll keep getting worse til’ i’m stuck in my box on the shelf and i’ll be free of this pain. I can make it through this even if I don’t want to die this way. I’m excited to be free of this pain, but what about my family it still won’t be ok. I’ll be free and they’ll be hurt, it’s scary to think of myself not here. I know on that day, it’ll feel like a loss, but I ran the course and i’ll finally be done with this pain and the disease never won, that means we did. hoping to make it to the clinic today have a uti i think and am allergic to antibiotics pray for me god bless you

March 4, 2014 I don’t believe in the words shouldnt have and could’ve, I truly believe that everything’s meant for a reason and everythings happening the way it’s meant to, what’s meant to be will be and what’s meant happen was and will. There was someone talking about their baby and they looked to little and were in pure black and there were easter egg kits and I could barely look at them because of Karli loving Easter so much, and I was mourning being sick and my family getting sick and wore black clothes and it just doesn’t feel fair. I think i’d be a great mother. If this didn’t make you progress more and make your child have the odds of getting Juvenile Huntington’s Disease through genetics to have a baby I’d love to be a mom but I can’t. I know it’s God’s Will and I trust in that as much as I can right now, sometimes I fall but that’s normal, ok I fall a lot more then sometimes but God and Jesus are always there with an Angel that comforts me too. People might think of this stuff as how can I believe that or it’s just hallucinating.. It’s as real as can be for me and Karli taught us that. They’re the good in this. I’m so blessed to have God and Jesus and the Angels, and without them I’d be so lost and without their words, I know I neglect the words but I’m so blessed to be blessed by those words.

February 27, 2014 It comes up behind you and hits you just when you’re getting used to the way things first were with the symptoms, it gets worse.. what you had you might get again, and whatever lasts odds are is staying.. and every virus every cold there’s always something there and it drags on for months and then you catch something else. Jhd is your own personal inner torture chamber.

February 14, 2014 Completely out there.. It’s so weird seeing people that are actually happy like literally no cares in the world and to think I used to hang out with them seems even more out there.

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