My thyroid is making me bad more i feel on fire n then ice bucket n always need a fan on my head.. i need to focus on what works to keep body calm enough like ipad with alexa reading me books.. i cant even document in my calendars book n planner they’re not digital so Ipad is updated I don’t know why God’s plan involves me not being able to shower myself anymore to still being able to use computer and ipad iand when i get up etc i have all these seizurey jerky movements and thanks to who invented this word fill in thing so I don’t have to type all these words id rather be living life more like play with pups and my nieces but I can’t understand conversations only online but not in person or phone etc i can only process through fb chat not even video chatting i keep forgetting stuff and remembering randomly and when i need a word it takes so hard to find it my body s like holding me hostage painfully until I’m free of it
I don’t know whats jhd or viral or anything really it just all hurts so bad, the doctor says if I can’t take the meds because im allergic and too sickto travel my teeth issues and limited life span compared to normal will be end game. I’m thankful for his honesty. It’s not shocking living every day knowing you’re dying so it wasn’t much more of an acceptance he got. Probably excepted more.. but when she many in your family already passed and with strong faith it’s not so scary of a leap.. but other times it’s soo scary and sad and then relief.. It’s God’s Will and being with everyone again will be amazing and then when others die we’ll all get to be together.
I’ve read old books through my alexa voice kindle I brave new ones vbut am not used to wanting to only reread others like when i watch tv and stick to cartoons and others im used to i have a schedule lights have been hurting more nausea movements I can’t keep a normal conversation offline and it’s getting harder online it’s easier to comment and post diff things then converse anymore cant handle noises like even background noise its like an erased head or a crayon scribbled one i can’t I’ve been so weak my body is reallly slow inside and out I even frow up what I can’t digest so it’s all spaced out even writing this seemed impossible but i did it thank you God and Jesus there’s times when I have more ability and strength but then i just remember when i was able it’s all just so confusing and complex
I’ve been on antibiotics I’m allergic to allof them so it didn’t go well even with allergic meds for my teeth infections n now i need more for a uti and i cant i cant its too much but it could spread through my body if it doesn’t work it’s all still spreading and if it comes to it I’ll choose to die instead of the hectic trials of keeping me alive with such more in the point it already hurts soo bad all the time from the jhd, I’m scared to lose my family and. Everything i have comforted here but i cry anyways for who I’m missing before I’m even passed away.. I know it won’t be missing them this bad In Heaven it’s just so reality lately, it’s so panic to live like your dying it’s so hard so just living as regular as possible well for me and. Trying to have more time with ones I usually don’t give so much to lately
Hoping I feel good on Christmas antibiotics start tomorrow for 10 days but I’ve been allergy to all antibiotics bad so Benadryls we’ll see what happens for my mouth infections i told him about pain vs pain and this is the best we can do to comfort wise I can’t handle more then that we’ll see how this goes its scary and sad but I’m just scared of more pain people don’t really get that he says tthe temperatures ive had over 2 weeks could be bacteria and it could get to hurt my heart valve but I can’t do surgery i just can’t it’s pain vs pain 🦋
Officially allergic to this one too, lots of Benadryl shitty oxegyn temperature super sick and dizzy no funOfficially allergic to this one too, lots of Benadryl shitty oxegyn temperature super sick and dizzy no fun
Update going off the antibiotics too allergy and makes mee too sick, so dizzy i fell bbackwards from it
I’ve watched Karli go through so much and never did I think I’d be able to relate to her later. She took the love faith hope everything when she died and it took so long to figure out how to get some back. Karli and Daddy took parts of us even in our 💕 and I miss and love them soo much and hope and pray to see them soon. Everything is turning into blank space as time goes by because they’re all leaving and dying too.. the point is juvenile Huntington’s disease is your own personal hell.. and I never thought I would understand the pain of it being so bad you want to scream and you cry even when you try to not let it break you symptom by symptom but there’s just so much limit. You screamed in stores in your stroller and i hear and see the things that make me want to crawl out of there too, and the dystonia and hard to breathe and I know I’m not 13 and I know I don’t have or want feeding tube just comfort and dying at home.. but i can relate to way too much now and it scares me that these symptoms are going to keep happening and I know God and Jesus are my rock and you said it yourself through your life how much Faith you had and you were so brave because I can’t always hold it. It’s scary , relief sometimes because i can be with yous sooner and thats scary too. The frustration of not being able to get it fixed or helped and the relief I know i pray I’ll be with yous abd Sabrael and Ellie and Sully and Grandma and Grandpa and soo many more.. i can relate to the frustration of trying to get understanding and losing it and being treated like a person and not a disease while still trying to fix it.. the loss of what you loved to do and pain of watching others do it.. the wanting to try it again and failing.. we’re not the same I know jhd wise and person wise but I understand more and more and Faith is the only thing you can truly hold onto that won’t leave or fail or ruin or anything because you said it to Keep Jesus in your heart ❤️ and you were so excited to go be on his lap.. just taking it moment by moment and thanks to you it’s easier then it would be without you I can’t even imagine it..
At any moment everything can change time keeps moving forward.. my Grandma died yesterday.. i love and miss her she loved family she had a big family then went to every event she could she was supposed to never die, grief is too much everything seems to be that way she’s with gpa and karli and her son jack who died as a baby and she got to die at home where family grew up with her husband she loved Christmas the most i think to gather all the family around.. and her sassy tounge that she stuck out 😇💕
I knew in school i was being watched and listened to and special things put in place but being in my iep i knew so it was great to know but not so great knowing what was happening and being watched and the special things comforting but completely exposed like when you see people talking about how to deal with things and being the one who’s sick you can tell when you’re being specialized like talk to them like this etc and it’s like I’m not a disease but I’m sick with one and people use it to advantage and people use it for manipulating and others just to hurt sorry it’s been so hard to write as much it takes an hour just to decide if i want a candy and if I should reach for it or for when it’s soo delayed bad
We’ve been having bad weather that attacks me through my body which seizures and shakes and jerks and hurts so bad and mom says i have night ones too.. the lightning was like an eeg horrible mean.
There’s a horrible Empty i feel, how do you grief right anyways.. i see where Sabrael would hed chasing the mice away in my room.. i see ellie laying with Mom while her kids ben n dottie play and i see Karli and Daddy in so many places everything is so empty I just push it away in my mind is that even sane i guess nothing really is and I’m really not sane to begin with and healthy is a word not used anymore i even feel empty for the friends i had helping me.. i just wanna scream angry and sad and frustrated and sick of it all so hard it’s all so hard and im soo sick of empty and hurting from jhd and allergic and ashthma and thyroid and food balance and medicine i love God and Jesus i am so very much blessed even when it seems i cant see all of it and i talk and feel because I think it’s because I’m human and he died for us to be saved anyways, I don’t ever mean anything against Faith I’ll die at God’s Will and God Winks are amazing and i can still feel so
Empty and Helpless and everything I’m just screaming and crying and am here. One day i pray I’ll find out why and be with everyone and God and Jesus and suffer no more. Amen Alleluia I can’t wait and i can wait at the same time because it seems dying is confusing like that.
Showing the Honesty and Truth in Juvenile Huntington’s Disease is very hard considering everyone who doesn’t want it shown, or to see it. They only put Adult HD and Nothing about the jhdkids. Huntington’s Disease and Juvenile Huntington’s Disease are VERY Different. For Years Of My Life My Journey Has Strived To Show This.. As First Seen Probably For Alot In The Real Huntington’s Disease Video https://www.youtube.com/watch?v=Dhj2gRvWn3w
the first of many I made, including ones of myself sicker in a seperate account jhdvlogger and Mom’s made one’s also jym092000.. and of course into jhdkids curejhd, i’ve met many many many amazing families and stories and kids and added to jhdkids.com and jhdkids fb and that’s when I ran into Justin and Autumn’s Story With Londen (Wife & Mother) It started as her story In videos etc she posted earlier Like In This Youtube One https://youtu.be/gDH_gbxBjcQ
Then Their Story Started Going Farther and Telling The Truth The Whole Way.. Now Autumn Is Shown All Over With Her Mom Telling Them The Truth Behind Everything and Education So Many People!! It’s Incredible, They’re Truly Heroic.. They Just Won The JHD Youth Award At Convention (Virtually) Which I’ll Share The Link Of Here From Their TikTok
I have to admit, being so sick I was and can be very worried about the future for juvenile huntington’s disease awareness. I’m writing this right now, because I want you to know before I’m too sick to write this down that I’m very thankful and blessed and that we all should be to have them blow everything up with the Honesty Of Juvenile Huntington’s Disease VS The truth people keep trying to keep.. It’s A Cruel Disease a Personal Hel* and These Kids Deserve Their Own Help!! And I Truly Believe Autumn Londen and Justin’s Story and Awareness Can Keep The Future Bright, Because I Can’t Anymore Like That.. So Find Them!! Her TikTok Name is @londen_for_real and All The Families Who Have Lost Someone Or Still Are Do Have Support Networks Like Kinser For Meaghan etc and Things Set Up Even Up To HDYO Is Amazing.. So Please Watch What You’re Using You’re Fundraising and Efforts For Because It’s All So Complex Be Careful.. I hope i can meet you one day Autumn, Keep Smiling Even When You’re Going Down Ok <3..
Here’s Their TikTok https://www.tiktok.com/@londen_for_real
And Their Youtube https://www.youtube.com/channel/UCSbaIqsR8LYWc4xo00LsKBg
Here’s her Facebook Support Page https://www.facebook.com/autumnsadamantadvocacy/