My little disability space [TW]
Hi! My name is Avy. I'm 15 years old. Basically I am going to use this space to rant about pain, the affects of my disability, and weird little things about it no one notices.
Let me explain my story a little bit:
So in 2021 I was playing soccer and I got stepped on, and then stepped on again early 2022. I went to my doctor and she sent me to an orthopedic doctor. That was when the surgeon said he was surprised I hadn't been to see him sooner. Because of my injury I ended up with severe tendinitis and arthritis in my foot. I was sent to physical therapy. Through months of intense physical therapy 4 times a week and going to the surgeon every 3 weeks, he figured this out. I have naturally high arches, it runs in my family. But for some reason the tendons in my foot stopped growing when I was about 7. Which explains why my feet have always hurt. As I'm getting older and taller it's getting worse and one day the tendons in my feet will snap. I also have tri-pod foot (that's what he called it) from my heels being misaligned. Basically only 3 really small points on my feet ever touch the ground. Not even my toes 😨. I've gone through 2 pairs of inserts, I do physical therapy every dang day, and nothings working. Basically now my only option is surgery. Since I've been limping for 2 years my knee has been affected and so has my hips. This whole process has been really isolating and discouraging. I kind of just want it over.
Anyway lots of weird things happen so I'll share them here!
@AvyIsKing 😥 it's just heartbreaking😥 I do not! Understand your mum in any way. Being physically disabled, being ill is not your fault, never your fault. Your mental health however is all your mums fault😞 I hope the not being bothered to take you to the doctor thing is an empty threat, cause she has to step up and realise how much pain and suffering you are in. And she needs to start being a real mum.😟 are the stretches something the doctor have you to do? Cause they need to be gentle stretches, and humming a tune! I mean what's wrong with that. It's just ridiculous, you know what helps you, so she should let you be 😞 nightmares are terrifying I know that I've also been afraid to go to bed the past few night s, jeffy is there protecting you, and I'm always hugging you in my heart ❤ only a little while longer before the operation, then all your physical pain will be gone at least ❤ and pretty soon you will be old enough to tell your mum to shove it! I know it's all so much for you at the moment, but your gonna get through this, and I'm right here every step of the way ❤ I love you hugs you tightly ❤❤ it's all gonna be ok ❤ I promise ❤
@Tinywhisper11
thanks <3 my mom is bonkers. i have an appointment in 15 minutes and i have 3 lessons of school i need to do before im allowed to leave. <3 the stretches are gentle but painful. but everything is painful. i ended up just crying to my mum last night because im just tired. and im carrying so much stress around. like what if i fail my solo? what if i fail high school? what if the test says nothing and they don't do the operation? what if the operation doesn't help? what if my mom doesn't let me leave? im going to my friends for a bit today, then ill be home alone, going to try and take a nap. i love you so much lola <3
@AvyIsKing your not gonna fail your solo, Because when you make your music it comes from your heart, and you have a big heart ❤ your way to clever to fail highschool ❤ your mum can't stop you from growing up, and choosing your own path ❤ your knee moves out of place, your foot is not shaped right (with your arches) frequent swelling, bruising and they know your in pain, so sweetie don't worry the doctors will help you, you'll have the operation. And it's definitely gonna make you feel 100x better ❤❤ you got a lot on your mind it would be to much for anyone to deal with, but especially at your age😥 have fun at your friends house ❤ and yes take a nap, and relax, home alone sounds nice ❤❤ last night did your mum, hug you and comfort you??
@Tinywhisper11
my mom didnt, she didnt care she just listened. i haven't slept in 3 days, im utterly exhausted. my physical therapist mentioned yesterday that maybe instead of the operation ill just be in physical therapy for the rest of my life. that's not something i want at all. im sick of nursing my wounds, i want to heal. my legs are messed up and its getting worse and i pinched a nerve in my arm by not even doing anything and my mom says i slept on it weird but i don't trust her. me and my friend just relaxed for a while i almost fell asleep but i cuddled her puppy. today is a long day, and im going skating, maybe ill sleep tonight
@AvyIsKing ohhh! I really really hope you slept. It's not gonna be a easy choice with out some one fighting your corner😞 if I was there I would be ringing the doctors to complain weekly about the pain your in, and any new injuries. But you don't have anyone to do that.😟 I wish I knew how to make you better. Living with pain is just so hard. I don't even know what to say, I'm so sorry sweetie 😥 I hope you have fun at your concert today ❤ I bet your gonna be the star of the show ❤ I can hear you playing your solo in my head. I'm still so honoured your doing that for me ❤ I love you so much ❤
@Tinywhisper11
i love you too <3 and my physical therapist actually seems to care and shes helping, even though shes absolutely evil when it comes to the stretches. she very slowly was able to move my foot bones to get them into a somewhat right place yesterday and it felt so good i almost cried. she put a bunch of tape on it to help it stay that way. today is the first day in a very very long time i have absolutely no foot pain waking up. morning is the hardest. i did go skating and i skated for 2 and a half hours D: but it felt good to just do something normal. im trying to think of a way to get you to hear me or see me play (: i love you so much. and i do have someone fighting for me, she just lives wherever you live <3
So I had a really bad pain day yesterday but I nailed my solo and my director told me I sounded professional and he didn't make me stand up because of my foot and knee situation and I'm really sad that I won't see a lot of my friends for a long time but I'm also really really proud of myself
@AvyIsKing yaaaay! Well done ❤❤ you are very talented, so proud of you ❤ and so honoured to know you ❤❤ no more band for a while??? How are you feeling??
@Tinywhisper11
THanks ❤❤ I have graduation rehearsal on Friday /try outs for new kids, and then the next Saturday I'm playing a graduation then I'm done til August sadly
@AvyIsKing good luck with your graduation ❤❤ that sounds fun ❤❤ and August isn't far away, plus you get to enjoy the summer sun a bit ❤❤ how are you feeling? Do you think the stretches and exercises are helping?
@Tinywhisper11
had a terrible pain night and im sore today. I had a formal dance last night and my mom ruined the entire night for me and made me cry and told me i ruin everything and sometimes she wished i wasnt such a burden. I didnt do anything wrong ): i didnt do much dancing, i just dont care anymore
@AvyIsKing 😞 aww sweetie I'm so sorry😞 don't listen to the wicked witch, your a blessing not a burden, and everyone else can see that, except her😟 I hope you get to relax today ❤ have a day just for you ❤❤ I hope your pain as eased a bit ❤gives you a gentle hug ❤ I love you so much ❤
@AvyIsKing oh! Well that's good. Maybe she isn't a wicked witch after all😕 that's strange, but good ❤ how are you feeling?
@Tinywhisper11
tired aha, busy week coming up. (: i start therapy on Friday
@AvyIsKing physical therapy? Let's pray that helps you ❤❤
@Tinywhisper11
Actually she's a psychologist who is gonna try and help me mentally (:
Also isn't it late over thereeee sleep if you can
@AvyIsKing oh yay ❤❤ that's awsome ❤ my psychologist is really nice ❤❤ and remember you don't have to talk or tell your mum, anything that is said during therapy ❤ praying it goes well for you ❤
@Tinywhisper11
i hope this one is nicer! Yeah i dont want my mum to know anything
i love you soooo much and i will reply when i wake up ❤️❤️ its late here
@AvyIsKing goodnight angel ❤ sweet dreams ❤
No no no no no
no no like i just cant
all i can think right now is no
I've been waiting for this test since OCTOBER
its finally tuesday
it was here
this was supposed to help
i was supposed to feel better
i was supposed to get better
this was supposed to help
i just got a letter
4 days before the test
insurance isn't going to cover it
i cant afford it
***
like just ***
its medically unnecessary
idek what to do
@AvyIsKing wait what??? I don't really understand about insurance or medical stuff where you have to pay, in UK it's fre e. So what's happening?
@Tinywhisper11
The government basically said my test isn't necessary and jt won't do anything and basically they won't cover me having it done. Meaning we have to pay.
It's really expensive
I can take my insurance company to court but it will cost so much money and time.
Basically I'm screwed and my mom called the hospital and since they are a research hospital they get a lot of donations and funding they can pay for most of it. If that doesn't work I'm probably not getting the test
Update
We don't have to pay and I'm still getting the test.
The hospital is a donation run children's hospital and basically we will never see a bill. Since insurance won't cover it, I'm just not getting charged at qll.
I'm so lucky, genuinely
@AvyIsKing Ohhh thats really good news!!! <3<3<3<3 :)
@AvyIsKing oh thank you God ❤❤ now relax and take it easy today if you can, yesterday must have been so scary and upsetting for you. But good things always happen to good people. Gives you a very happy, relieved giant tiny hug ❤ everything's back on track, it's all gonna be ok ❤❤
@AvyIsKing awww sweetie that sounds like a lot of fun, I know you don't have band now, but know you have this youth club ❤❤ yaaaay! Hopefully this will be a fun distraction for you ❤ is it just once a werk?
@Tinywhisper11 is it just once a week*? And healthiest how have you been?
@Tinywhisper11
it is! but i cant go the next 2 weeks, im going to visit my grandma this week and next week i have a meeting.
and idk how i am health wise. im hurting. i guess? i go see my dr this morning. mentally im a mess and its physically affecting me right now i guess
@AvyIsKing ❤ have a nice time with your grandma ❤❤ poor you😥 hugs you tightly ❤ I know cold weather affects pain levels, but is the heat making it any worse for you??
The heat is just unbearable at times. It's cause of this huge tight brace, that wraps tightly covering my stomach and all my back, it's so hot
@Tinywhisper11
the heat is worse for me because im allergic to water, and therefore sweat! it got like 90 degrees in my room last night and i woke up barely able to see and i threw up a lot and then had to sleep on the couch, not fun
but yeah my pain isn't doing well, but also im not taking care of myself. had a very bad week sadly. and i have to see my brother Friday, not sure if u know who he is or not. i kinda just wanna cry. the book i was reading was very triggering and also just taught me stuff i didn't wanna know. i finished it though
i cant straighten my leg without immense pain and idk whats wrong. i think im just failing at this point
how are you doing
my sister had her ingrown toenail removed yesterday and everyone is talking about taking care of her and saying how brave and strong she is and shes such a trooper and my grandma saw me limping and was like grow up. everyone is revolving around my sister and it sucks. shes making a huge deal over a mild medical thing, shes telling people she had surgery. its really disheartening because i don't get to do that. i just sit here barely existing.
i haven't taken my inhaler yet today and breathing is really hard
@AvyIsKing 😥 I'm so sorry sweetie, I wish it was different for you at home😞 I would just have to sit with you cuddling you all day and night. Doing everything for you, like you were the queen. That's the way you should be treated ❤ I hope you took your inhaler after writing this. Does weather effect asthma?? Cause I been really bad with asthma lately too. Your allergic to water😂😂😂 it could only happen to you😂😂😂 I'm not laughing😂😂 honest.
with all your illnesses and disabilities, and well me just me! If reincarnation was a thing, I bet in our last lives we were someone like hitler, and are now being punished😂😂
gives you a giant tiny hug ❤❤ I hope you'll be ok ❤ and your brother! He did bad things right? It's very sad you don't have the option not to go see him😥 I want to protect you so much, I wish I could. I love you ❤
@Tinywhisper11
if anyone is getting taken care of, its me taking care of you (: i will be 18 in 666 days... hmmm not such a lucky number ): but each number is divisible by 3, and if you add them together you get 18 which is 9 times 2, which makes me very very happy. i don't know if weather affects asthma, im not sure xD. i have what's called coughing-variant asthma so instead of wheezing i just cough like 40 times a day, and i get really bad coughing fits where i cant catch my breath.
you go right ahead and laugh at me ok? please, i find it incredibly humorous as well. im a mess. and i really hope i wasn't hitler! i had family living over there during that time im pretty sure! maybe i was a cannibal... not much has changed. i know its not true but i like to sit here and just imagine that God created these struggles for me to test me, to show me how much is possible, so that when im an adult i can be happy and free and taken care of. i know that's not true, because both my mental issues and health issues will live with me for the rest of my life. but maybe ill get to the point where instead of waking up screaming and shaking and noticing im all by myself, maybe ill have someone to hold me. imagining the future kees me alive.
why are my dogs running around like psychos? xD they are being insane and its so early in the morning
yeah my brother is... a really really bad person and he did really bad things to me and i just don't like him. he reminds me every time i see him that i am a useless piece of junk and life would be easier if i d!ed. lots of fun fun fun stuff. i love you too <3 just so much <3
@AvyIsKing I'm with you there the future is gonna be great, and people like us will have a life worth living, a happy life. Where we can be free ❤ always hold on to the hope of 'one-day '. You your like Cinderella a really bad start, not loved it appreciated, but in 666 days, your life will begin, your a true Disney princess, and they always win, and live happily ever after ❤❤ hugs you tightly ❤I love you ❤
@Tinywhisper11
I woke up this morning with a feeling i haven't had in a while. i have hope. i find out about surgery in 19 days. i start therapy in a little over a week. im almost done with school for the year, i got one subject left. and if im a disney princess, so are you (: i love you too, hugssss
@AvyIsKing yesss! It's all starting to go the way it should for you ❤ I'm so happy to here your hope is back ❤❤hugs you tightly ❤
@Tinywhisper11
huge huge hugs (the gif sender isn't working on my end so I cant send you one ): )
i get to be home alone for a while today which im really excited for, just some time to relax, and not have to take care of anyone before my brother gets here
@AvyIsKing you won't be alone with your brother will you??
@Tinywhisper11
i ended up being alone with him for a while. our trip went ok i guess. he's genuinely really concerned for my health because apparently its not normal to see your heart beating in your neck to the extent i do sometimes. he was a real jerk tho and screamed at me a lot and told me some nasty things but he also told me im smart so i dunno
@AvyIsKing I'm glad he's concerned about your health. And you are very very intelligent. However don't listen to him, he's a bad guy. How's things going between you and your mum? And how have you been feeling lately??
@Tinywhisper11
i had a really bad day friday, pain wise. like my mom almost called the dr even tho im 600 miles away. the past few days had been better, i actually went running both days again. today is a not so great day, both mentally and physically. i think the lack of sleep is catching up to me. my mom is still insane and shes driving me nuts and im so tired of everything
@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
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
