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 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
@AvyIsKing oooo! Teach them dodge ball, and how to build a raft ❤😁 have fun ❤ I love you ❤
so
okay just
today i went to the dr to discuss my surgical plan. that's not what happened. first they sent in a freaking resident who looked at me said ur fine, maybe arthritis, and he rambled some more but at that point i had just shut down and my mom was like uhm heck no, get her real dr in here.
so my real dr came in and was like oh yeah im totally doing surgery but FIRST u gotta get another test done first to make sure it isn't a certain condition. they think it totally might be this condition which is neurological which means i cant be a surgeon and might never be able to work. i feel so useless.
i gotta see a brain dr and get a crap ton of bloodwork. basically they told me to wait.
im almost at 3 years im so tired
@AvyIsKing 😥 that really sucks, sorry sweetie. Haven't they done enough tests yet😮 so if it turns out to be that condition/illness do you know what that will mean? Will it attack any other parts of your body?? It's a very sad situation. I understand how frustrating this all is. But try not to looose hope, hugs you tightly ❤❤
@AvyIsKing hey sweetie, are you doing ok??? Remember I'm here for you, and I love you ❤
Heyyyy
Yeah I'm ok. Just been handling a lot and mentally I'm in a bad bad place rn. But basically if it is the condition thing they think, yeah it will affect other parts, and it's probably already spread to my hands. The Dr's haven't called yet. I'm just tired aha
@AvyIsKing gives you a giant tiny hug ❤❤ keep fighting through, your doing amazingly well. You can do this ❤
@AvyIsKing
hey mop <3 i hope it's ok to tag you here. Tbh I've not been around here much lately… i don't come on most days like i used to. On the days i do come i just lurk in forums a lot and don't say much in rooms.
But i do think of the people here and they pop into my thoughts 💙 And i've been thinking of you lately and realised you haven't really posted in this space for a long while. Which is ok of course, no pressure to do that. but it worried me a little… i know you have a lot of things going on in your life and life can be *** and difficult and unfair. Your one of the bravest strongest people i've ever known mop. although i know we haven't talked in a long time, i still think about you and i've been alittle worried lately. I just wanted you to know someone is thinking of you and hoping your doing okay. Me sending hugs to if okay 💙 I’m so proud of you for coming this far, even if your just surviving, i’m proud of you and i’m sending the biggest hugs and loads of love to you. I miss you so much and i hope we can talk again soon. Love you mop 💙 i miss you.
- Funni / Ni
@AvyIsKing hi hope your not hanging around here on cups anymore, is because you've made a full recovery, mentally and physically ❤ I hope your out in the world, and I pray your happy ❤ I love you ❤
@AvyIsKing hey mop, coming back here to drop a note. I'm thinking of you and i miss you. Not gonna lie, a little worried too. I hope your taking care of yourself. ❤️ Love you. *sends hugs if okay*
- Ni
