My little disability space [TW]

@AvyIsKing that was very brave of you to go running ❤ what I love about you, is despite all the pain, despite everything that's going on in your life, you still try your best to keep going, to keep living your life and having fun ❤I'm sorry Friday was such a bad day😥 and yeah, not sleeping properly mixed in with physical and mental pain, is just draining, it'll make you feel 10x worse😥 wraps you up in a cosy blanket and cuddles you up ❤ I hope you get a good night sleep, tonight. I love you ❤

@Tinywhisper11

the past few days have sadly not been kind to me, not in the slightest. i went on another walk, i walked 4 blocks, which is about 1 and a half miles. i was feeling okay, sore but ok. i wanted to push myself. that night when i was hanging out with my sister, my knee cracked and instantly it was this terrible searing pain. i almost started crying it was so bad, and i don't cry. my mom told me to get up and i said but my knee hurts really bad and she said she didn't care and to get up. so i did. and then yesterday i was in the car and if i tried to straighten my leg my sister would yell at me, that i was taking up her space, and by the end it hurt so so bad, i could barely think straight. i just wanted to cry. my knee was almost grey looking. my mom said just to tell my physical therapist. she also accused me of faking all of this. for attention. i wouldn't fake this. i got yelled at for being slow to load and unload the car, but i had searing pain. it doesn't matter apparently. im so beyond done and tired of all of this. i just wanna be done. i have camp next week and it was supposed to be my safe space and my sister invited my ex bfs younger sister who i love, but now i gotta deal with him probably. that's gonna hurt really bad. i keep having these terrible flashbacks to something my mom did to me as a kid, and im just so done. i just want this all to be over. im just tired ***. 

@AvyIsKing 😥😥 awww honey I'm so sorry😥😥 why don't your family care😞 it makes me so mad, that the people who should be looking after you, is doing the opposite. I hope your mum never as to deal with the pain your in, although for one day if she could feel your pain, maybe she would wake up😢 well sweetie, your a better person than that woman could ever be. And one day she will feel remorse when she realises what she had, and what she lost. You are beautiful, amaxing, so very clever and incredibly strong, and anyone who can't see that in you straight away, well they are blind and not worth of you. I love you ❤ I hope things will change and get better for you soon, hugs you tightly ❤❤

@Tinywhisper11

me too, i really really hope so. huge huge hugs <3 i know ill never get back what I've lost but maybe if i can just find new people. i wrote a letter to my mom last night, asking her why. just why. im also not allowed home alone until i start therapy and do things to earn back her trust. funny thing is i don't want her trust. im just keeping my head down, keeping everything in and locked away. my physical therapist is genuinely very worried for me now, i couldn't straighten my leg yesterday, like i was trying and i just couldn't. apparently that's bad. my mom 'forgot' to give me my pain meds last night, after we got in a huge fight because i told her that i wanted to go to college in ohio with my best friend, apparently that offended her? she knows i wanna go there, its a good school too, I've looked into it. i also told her im scared of her withholding my diploma so i cant graduate and she laughed at me. idk 

im sorry 

@AvyIsKing the letter that was very brave of you ❤ well done ❤ the doctors are gonna have a start moving their butts and give you the operation. I hope you get to go to Ohio with your friend, that would do you good. Away from her! Is all you need. You have the brains to go far in life, you have the personality and social skills to make good friends easily. And your mum well oneday when your rich, successful, with a happy life. Your mum will be left regretting each and every moment she decided not to be a good mum. You must be in so much physical pain and mental. It's such a sad situation, I'm sorry all this is happening to you. Gives you a huge hug ❤ your in my prayers like always. I love you ❤

@Tinywhisper11 

hugs <3 i love you too. really struggling lately, june is a hard month for me, mentally. i have therapy tmr, like mental therapy xD. idk whether to be happy im getting help or mad i have to wake up before the sun. my mom might regret it i don't know. i hope she does. i saw my old boyfriend Saturday, the one i told u about a lot. he ignored me, pretended i didn't exist. i wish i could do that. just decide one moment i don't exist anymore and ignore myself. that would be nice. i keep reading books about SA survivors and people with disabillities and i wish i could be like them. i wish i was strong, i wish i had a voice to speak out and tell people. speak for better rights, try and make a change. i cant even bring myself to tell anyone verbally. i cant say it out loud. i feel weak. 

@AvyIsKing 😥your not weak, your no different to survivors who seem brave. We all struggle honey. When your free to move away and not be under the influence of your family so much. Then you will start having the courage to speak about it more ❤ I want to help others to, but there is only so much I can say here, and this is the only place I have to get the word out and try to help😥 it's really disheartening. So both you and me Will get out chance to speak up one day ❤ you know what if he was acting like you didn't exsist then screw him, he left you because he's to immature, and he proved that today. Therapy tomorrow is definitely a good thing🙂 your gonna do great, I bet she's really nice. All you have to be is you, I know it can be scary, but just be you ❤ and make sure you set seven different alarm clocks😁 good luck tommorow ❤❤

@Tinywhisper11

I struggle but the idea of saying it aloud is too much. i feel like a liar. like how do i expect people to believe me when i don't believe myself 

even with my pain. how do i know im not over reacting? im just really struggling right now and i don't know what to do. my therapist is so nice but my mom was there the whole time and i just didn't know how to ask her for help. 

@AvyIsKing ohh! Your mum went in with you😞 i don't know how it's gonna work with your mum in with you. Have you asked to go in alone?

I know your struggling sweetie, but it will get better for you, you will be ok. Gives you a giant tiny hug ❤❤ I love you ❤

@Tinywhisper11

next week ill go alone, this was just the first time, just basically letting me get to know her. it was really nice. 

@AvyIsKing oh ok that's good ❤ I'm glad shes really nice ❤

it is so funny to me, because i am scared. i am laughing at myself but also sick to my stomach. I've wanted surgery for so long. so so long. i find out next Wednesday what the plan is. so why am i so scared? im scared of it going wrong, im scared of the pain, im scared of the entire process, im scared of everything 

@AvyIsKing it's ok to be scared, infact it's very normal.  Operations are always pretty scary. The wait, the build up, the fear of what might happen or what's going to happen. It's a very stressful, nerve wracking time. But I know in a year's time you'll be running and skating and doing all the things you been wanting to do for a long time without any pain at all ❤ I know it's scary sweetie, but the quicker it's done with the better it will be ❤ your gonna be ok, everything is gonna turn out ok. Gives you a giant comforting hug. I'm here for you every step of the way ❤❤

@Tinywhisper11

huge hugs <3 thank u. it means so much to me. just so many possibilites

@AvyIsKing try not to be scared, you have many people who love you here ❤ and I will always be here for you ❤

@Tinywhisper11

thank u, and im tryin

new random update 

so yeah, not doing to good. like just not doing good rn. like im just not.

went to my dr. im hypoglycemic. maybe diabetic. my glucometer arrives tmr. i have to start checking my blood sugar when i feel like crap. 

because that's what i needed rn. 

im just so over this 

@AvyIsKing 😥😥😥 humans should be like robots, just swap broken parts with new parts, it would be so much easier🙂❤ sorry I haven't checked in on you, I've haven't been on here for a few days. And I know your trying sweetie, you try incredibly hard every day ❤ so if you have low blood sugar, does that mean when you feel like poop! You gotta eat sugary sweets and chocolate?? Hugs you tightly ❤ I love you, never give up ok? 

It's okay, it's good to take time for yourself and frankly I've been so busy 😭😭😭 and I'm actually supposed to not eat sugar like at all ): I love you too

Right now I'm mad at my Dr. I had that test. Got the results today. Here's a blerbSo they are recommending surgery. They recommend they cut 1 of my tendons, and lengthen 2 others. It would be an outpatient procedure if Shriners did it, go in one day. I probably wouldn't even be asleep. Then I'd have to go back a few weeks later and they'd completely put me under and stretch it out. I'd be able to walk on the cast I'll be in. Then they'd reevaluate and see if I need to have my bones broken and whats going on with my knee. I'm lowkey kinda frustrated with them because they said this test would tell me bones or no bones and it literally Told us exactly what the Dr said like Last summer. Which is frustrating. And obviously I'm scared outta my tiny mind.

So I'm looking at 2-6 surgeries. I'm scared. I'm upset. I'm not comprehending what this means very well. I told my mom I was frustrated because i was thinking 1 MAYBE 2 surgeries. And she yelled at me 🥲. I will know the actual plan on the 2nd when I see my surgeon.

@AvyIsKing hugs you tightly, I know surgery is scary😞 and so many in a short period is gonna be terrifying. I'm not surprised it's to much for you to take in right now😥 I'm so sorry sweetie. But please don't be scared at the end of all this your gonna be like a new Avy, no pain, no more suffering ❤ I think we both know your mum isn't gonna understand, it's really heartbreaking😥 the first surgery, they will numb the pain, you won't feel a thing ok? Just whatever you do don't look at what the doctors are doing. It is frustrating that this could of been fine a year ago. But they took their time just to make sure they get this right, to make you all better ❤ hugs you again, keeps you close to my heart (as always) I love you Avy, everything is gonna be ok ❤

Hugs, I love you too ❤❤ it's just for some reason so terrifying to me. I wanna know everything but I don't at the same time. My brain is a mess and I just need I don't even know. I wish my mom would hold me and just let me cry at this point. But that's not how it goes. I need to grow up a bit. I'm being dramatic about this whole process yk?

They wanna test me for a bunch of things and check my genetics and all that and it's a lot. Just a lot. I gotta be brave tho and put on a brave face and pretend I'm not gonna cry

@AvyIsKing your not an adult, and even if you were you'd still be allowed to cry and panic and be terrified, I wish I could give you a real hug right now. You know I'd just find out what you need to know without going into it all to much. Well that's what I would do, but I guess for some it might be more comforting to know everything. Have you told your therapist about the doctor results? Hopefully she can give you the emotional support you need right now. But remember you are human you are allowed to feel, allowed to be upset. But I have a very strong feeling everything will work out ok ❤hugs you tightly 

I'm actually seeing my therapist this afternoon so I'm very glad for that. I genuinely wish I could just fall apart but I can't. I'm not allowed. Like everytime I try to I get yelled at. ): I love you so much

@AvyIsKing good luck with your therapist appointment ❤ you know with your therapist, that's one place were you are allowed to fall apart, and cry it all out. I'm sorry about your home situation😥 I wish things were better for you. A place you can be yourself, a place were you feel safe and are happy. Oneday you will have all that and so much more, always hold on to the hope of 'one-day ' ❤ but first let's get you running around again🙂 it will all get better, it really will. Hugs you tightly ❤ I love you

I didn't cry but my therapist said I needed too. It was a call so I was home on my bed. We talked about some past trauma tho and it was really nice.

@AvyIsKing aww I'm so glad you have a nice therapist ❤ talking can really help, and talking about trauma is amazing, your doing so well. I'm really proud of you, not just for therapy but I'm proud of you overall. I really do think your amazing ❤ and yep! Crying is good for you, but maybe not in your house😕 just becareful, I love you q

I hear you. And feel for you. I have high arches too it has always been a issue, but maybe this will make you feel better. I have worked in medical specifically back and neck for 25 plus years. Very intune with my body, so I started having low back issues yrs ago from a squatting mishap with my spotter. Anyway I can deal with that. I got into a car accident in 2020, and then my head bashed in Feb 2022, and had a subdermal hematoma and post concussion syndrome. Now also I have RA and osteoarthritis am taking care of it, but then I fall off a hammock in June. WENT to hospital everything checked out broken ribs I can deal with that. So 4 months go by no pain well just the normal, and then 1 day my back started hurting so bad I couldn't take it, and it went on until December went to neurologist. Mri cervical c5 56 67 bone on bone degenerative disc disease, low back 2 bulged disc's 4 5 6 si T1, but then there is a hip issue that they see on CT so go to orthopedic long story short. I have since December been diagnosed with Heterotopic ossification no cure irreversible and also torn labrum, and wait for it left side Cam FAI which is rare and genetic and how did I not know, and so had to file for disability. And last there's something else on left so another mri. I have been in so much pain PT helps for a day but then really hurts the next. It's so hard, but I am staying positive and I think of my grandmother and aunt who fought pain all there lives and were the strongest women in the world. ! We can talk about our ailments together but also build eachother up. Stay strong and manifest healing for your feet and your body and soul.

Oh my goshness 😭😭 your poor spine!!! Hearing your story was heartbreaking!! Mentioning your grandma reminds me of mine, she was hit by a car and also has terminal lung cancer and she still talks to me like my pain is valid! I mean last person who should be complaining about pain around her is me but she still cares!! We can totally build each other up! That's what cups is here for

@AvyIsKing hi sweetie ❤ I just wanted to let you know I'm thinking about you, and I love you ❤ hope your ok

Love you too!!! Sorry life has not been kind to me lately 😔😔

@AvyIsKing it's ok sweetie ❤ I'm here if you need me ❤

@Tinywhisper11

its just the pain and my mom and my mental health all not getting along and making life a big ol pain in the butt. how are u doing??

@AvyIsKing I'm surviving ❤ gives you a giant tiny hug ❤❤

Nobody warned me 

Nobody told me this would happen 

Nobody walked up to 7 year old and said 

Be grateful,

Soon little one, you will watch your life fall apart 

It will start as an ache 

An ache in your foot 

You go to the doctor and they say 

It's tendinitis, it will go away. 

3 months later it will still hurt. 

And it's worse. 

It's no longer an ache

, a stabbing pain more.

So they say tell you 

Use these shoe inserts, 

It will get better. 

Little one you are barely a teenager, 

You should enjoy the time you can run,

Go through the pain, through the ache 

Because it spreads. 

The pain will get worse. 

Barely bearable anymore. 

You start to struggle to walk 

And all of a sudden it just isn't your foot

It's your knee 

Your hip 

Your back 

It hurts so bad you don't know what to do. 

Then, little one, when you are about to drive 

They will throw words at you 

Surgery 

Tibial rotation 

Genetic testing 

2-6 procedures 

Possible Charcot Marie Tooth disease 

Autoimmune condition

Chronic 

For life.

Little one as you are picking your college path, 

You will find out if this is forever 

Your hand will stop working 

Your left hand will drop things 

Feel achy 

The achy, 

The same ache that ruined your leg. 

You won't be scared. 

Just sad. 

Because no one warned the little girl 

The one who wanted to be a surgeon

Save the world 

Write music 

Run a marathon 

Walk down the Isle 

That those things may not be possible. 

No one warned her to go on that run 

Because she won't be able to run forever.

To draw the drawings 

Because her hand may fail 

To hug your friends because

Maybe you can't forever. 

I wish I would've appreciated the times before everything fell apart. Before the pain became too great to exist. But I guess I'm just a dumb kid

@AvyIsKing I'm crying as I read that😥 little one, I want you to know, that tests in our lives are there to be overcome, what is now will not be forever. My little one, your gonna get better, you will do so many wonderful things, and pain will become a distant memory. My little one please don't loose hope, for you are destined to do great things. And my little one please know you are loved and cared about ❤ I care, I love you, hugs my little one tightly ❤

Hugs you so tightly ❤❤ my arm hurts and idk what's wrong, it's so achy. I'm just sad. I hope I get better but maybe I can learn to deal with this. I was just sad to think that things are not going well. Like I had dreams and goals that I've held on to for so long and now I have to let them go I think. I love you so much, seriously. You are so amazing

@AvyIsKing don't give up sweetie 😥 I know it doesn't sound so great at the moment, and I know how crushing this all is. But it's amazing what we can achieve. Disabled or healthy there's nothing we can't do ❤ gives you a giant tiny hug

So I just read a book where a girl who has partial hearing loss goes to deaf camp and a lot of time she doesn't feel deaf enough. That's how i am. I don't feel disabled enough to consider myself disabled. I'm not regular abled, obviously. But I still have all my body parts, I can walk, kinda. I can write, with trouble. I can run kind of, but I gotta have my inhaler on me. I'm not sick enough to be disabled but I'm too sick to be normal. I wish when people glare at me in public for using handicap bathrooms or limping or waddling that they could see the struggles. The constant pain, the lack of sleep. I got called lazy by one of my grandma's friend, and out of shape. What they didn't know was i was having an asthma attack and needed my inhaler. My blood sugar drops but I'm not diabetic. My asthma doesn't make me wheeze, it makes me cough. I wish I could just fit a mold. I want some group of people to accept me. Like I don't know any disabled people irl really but if I did they'd think I'm a poser

@AvyIsKing some people have silent illnesses, some people have health issues when their young like you or old. Ignore the people who stare, ignore the people who judge. Cause they can't see past their own nose. (I'm not really sure I can give you that advice, cause I'm to scared to go out in public or to look anyone in the eyes) it's so hard when you just don't feel accepted😥 but anyone who takes the time to get to know you, to look past first judgements, their the only ones that should matter to you ❤ I don't like to say this, cause your so young it's hearybreakin g😞 but sweetie you are disabled. Hopefully not forever, but right now you are. 😥 I'm so sorry, I wish I could help you irl. But just know, we understand you here, you have many people who care about you and love you here ❤hugs you tightly ❤

Thanks ❤❤❤ yesterday was rough but today is better. Pain gets better. I'm at camp with kids this week and I love my kids and for a fun story I'm teaching sports and life skills