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!
@tinywhisper11 @darkerplaces
I'm back for the next 4 days.
im gonna start this post the same way i started the thread. Hi, i'm avy. I am 17. I have been in pain for almost 4 years. but they know whats wrong with me.
you read that right. I have a diagnosis! so i went to genetics a while back and they guy was like nothing is coming back concusive so im gonna do a heck of a lot more testing. I have an EXTREMELY rare genetic condition. it has only been a valid diagnosis since 2011. what makes it rare is neither my mother , nor my father, are carriers. most people with this genetic disorder, just get slight deafness. very rarely do they get neuromuscular symptoms. like i have. there isnt a cure. not a support group either. it isnt an easy fix, but honest, its me why would there be an easy fix. but its why my legs are the way they are. i dont have cancer. I dont have cmt. i do have a srugery plan. we are readdressing in 22 days. 22 days and i find out when surgery is. im fighting like heck. i am extremely tired tho. i am also more likely than not going to end up deaf in my life. but im learning asl.
also, theres a databse for this condition, im not on it yet, and i cant share the link i dont think becauseyk health conditions. but there was a girl in belgium, with my exact symptoms. she passed away when she was 20.
but i still have a long good life ahead of me. i know what this is, i can work on this.
maybe we can cure it
love u all sm <3
@AvyIsKing I'm so sorry sweetie 🙁 but at least you know what it is 💗 I really hope surgery hurrys up for you, and you get the right meds to help with pain 💖 you know the doctors said I wont live past 40 its a bit of a shock when your told stuff like that, but I plan to live forever 😁 and so far my plan is going well😁 your gonna live forever too💖 we are gonna be those miracles💖 never give up on hope ok?💖
it's great to hear from you 💖 I really miss you💖 how's college? And home life being going?? No more roller blading incidents I hope🙂💖 hugs you tightly 💖 I love you girl 💖
@Tinywhisper11 oh and thank you so much for tagging me 💖💖
@Tinywhisper11
ugh i really miss you too ❤️❤️ ive been good, college is good, im smart! Yeah we will live forever!!!!!! My home os okay. Been weird since my grandmw died. Im almost out of here. How has lola been?
Also jeffy says hi!!!
@AvyIsKing good to see you popping by, good luck school!
@AvyIsKing jeffy is still alive💖💖 I was afraid to ask💖💖 gives him some virtual watermelon🍉 and of course your smart, you've always been so very very clever💖💖💖 sorry about your nan😥 I'm doing ok 😁 I have 3 little guinea pigs they are about a year and a half old now 💖 they are so precious💖😁💖 otherwise just enjoying the warm'ish mornings outside💖 so how many cute boys are there in college??
@Tinywhisper11
awww guinea pigs!!! Yeah jeffy is great and i got two mice, slim shady (the black one) and goob (the brown one)
im only taking college online rn. Im still finishing highschool and this semester was crazy. My grandma paszed and then i got really sick and almost passed too! But double pneumonia cant kick me, nothing can 💪💪💪💪💪💪💪💪 i took my final today, and i got a 100!! Full marks! Law school isnt gonna know what hit it.
So there aren't any cute boys in college but i may or may not have a boyfriend 🤭🤭🤭 hes the first since the old one i used to yap about in this thread. This guy is amazing. I sprained my ankle the other day and he said if he wss there hed carry me!!!
Give ur guinea pigs a hug from me! Heck give urself one too!
@AvyIsKing you got a 100 💖 that's amazing🎈🎈 I'm so proud of you 💗 your not just gonna take law school and kick it's butt, but your gonna do the same with the world 💖 your such a beautiful strong person I've always admired you 💗 and those mice are adorable😁 I want a fish just so I can make him swim shady 😎😂 your boyfriend sounds like a real nice guy💖💖 hugs you tightly 💖
@Tinywhisper11
lola ur messages never fail to put a smile on my face. I love u so much. U truly are one of the most amazing people ive had the pleasure of knowing. Swim shady 😂😂
i wanna be like u when i grow up
i must log out of my account now, ill be back one day ❤️
@AvyIsKing look after yourself 💖 and know you are loved here 💖 I'll see you soon 💗
wow im making a random update because im finally online again!!!!
guess who finally had surgery! it was terrifying but im recovering! it was almost 4 weeks ago. casts are itchy. im having some random unknown complications so i have an urgent drs app tmr :(
oh and also surgery again on monday.
its crazy that after almost 4 years we finally have a diagnosis
** finally are moving forward in the process
@AvyIsKing hiiiii sweetie 💖 I missed ya💖 yaaay! For surgery, but oh no for complications and more surgery🙁 but at least finally soon it will all be over💖💖 hugggssss you tightly 💖 how's everything else going in life???
@Tinywhisper11
i miss you so much too! im gonna try and be online a lot more. things are going good, im hapy in a good relationship rn. things are going really good, almost too good if ya know what i mean
OH really good news, jeffy might have another 6 years in him
@AvyIsKing 😂😂😂😂 how old exactly is Jeffy now?? I'm glad life is ok, and that your happy💖💖💖 gives you a giant tiny hug 💗
@Tinywhisper11
how have u been?
Jeffy is almost ten! Hes 9 and a half!
@AvyIsKing wow jeffy must be the longest living bunny ever💖💖 that just shows what a great mum you are 💖 I've been ok'ish, battling through some mental challenges but getting there 💖
@Tinywhisper11 oh it's Monday night here, I hope your operation went well 💖💖 hugs you gently 💖 can't wait to hear that your ok💖
@Tinywhisper11
imsorry youve been battling mental challenges, those are the worst. sending healing hugs if okay
im actually doing really good, considering. im not in too much pain, just hanging out today
@AvyIsKing this time last year you were in so much pain😥 so this is great news 💖 I'm so happy things are starting to get better for you 💖 I just noticed your pfp😂😂 don't kick the baby😂😂
@Tinywhisper11
I really was, things are going really well for me, ill probably post a huge life update thing on wendsay!!
oh my gosh u know south park??? i love it so much!!!
@AvyIsKing yaaay! Can't wait to hear your life update💖💖 don't forget to tell us everything about your boyfriend😁 I still can't watch tv properly, but my carers show me funny clips from movies and tv shows,southpark is veryyyyy funny💖😁 I love cartman soo much😁💖
@Tinywhisper11
I will!!! I actually have a new boyfriend 😭 weve been dating like a month hes so cute!
I also love cartman so much!!! Hes so funny
@AvyIsKing great to see you. sorry to hear that you have had some progress. Good luck on the next stage.
i used a wheelchair for the first time today
it was crazy for me. i thought i wouldve been anxious, or awkward or felt wrong. instead i felt free
we went to the zoo and we were there for 2 hours. before, walking around for 2 hours wouldve been it for me, the day wouldve been over, and i wouldnt have been able to enjoy myself because i was in so much pain.
instead? i got to roll around the entire zoo, see everything, and have fun! it was probably the best pain free experince i have ever witnessed. i wasnt tired after, i was able to keep up with my family. i got to come home and keep doing stuff. it was amazing
@AvyIsKing I am so proud of you! What an enlightening day for you. The good thing is that now you can think about other trips, ways to customise chairs and make them even more comfy and fun!
What is your next trip going to be?
@MistyMagic
im going to a huge convention in october, im so excited :P i love taking fun trips
todays post is a lil mix of happy and sad, gonna go ahead and throw a TW on it for mentions of surgical sites, blood, vomit, and mentions of a bad ex, and potential abuse warnings, sh mentioned kind of but skirted aroun
first happy: i got my cast off today!!! im in a walking boot for the next two weeks, with no walking and then after that i can start walking on it!!! im so excited. today at the doctor my mom noticed that she can no longer see the other side of the room through my foot, which is insane! my foot looks normal! it is SOOOOO crusty because yk dead skin that needs to come off doesnt come off whatever it looks gross. might post some links of my surgerical process (links so its veiw at own disgretion) if i can get them and make sure they are properly edited
now the weird: as many of u know im a huge horror fan! i live for horror movies! i was even in a horror movie tee shirt today. yet when i saw my incision i got so nauseous and dizzy i had to lay down! then leaving the office i got dizzy again and they made me drink water and use a wheelchair. now ur probably like "well duh avy this is in real life" i literally saw my grandmas head wound the day after brain surgery. im not unfamiliar with surgerical sites i just get bothered. its proably because im scared of my own blood. i was in the shower today, because i have to wash my foot and i got the worlds most overwhelming flashback. i worked through it and then my mom had to like clean and rebandage my foot and i had a meltdown. i was crying and stimming and kept pulling away and i couldnt communicate what i wanted to say. it was horrible. i dont like seeing my incision and also when its being touched its really uncomfortable i dont like the sensation and all that kept playing in my head was what my ex said to me. he used to encourage bad behavior on my part, and to do it on camera, because he "liked the color" meaning the color of my bl00d. it was... a scary time and my bl00d still scares me
on good news my boyfriend sent me a really nice text today so i felt good
also my leg is SOOOO skinny after surgery! i can almost wrap my hand around it. i call my leg skinny bob rn
@AvyIsKing great to hear you are on the mend. 
hey hey
kind of crazy update-
i ended up with a crazy infection in my foot :/ we were worried. i was out of town and couldnt see my dr, but i got on antibiotics right away! (this was last week)
and well this is how this week went
monday: got the clear from my doctor, the infection was gone and i could start walking on it
tuesday: walked a tiny bit, took my last antibiotic
wednesday: ended up in urgnet care with a rapidly spreading rash, and a fever- found out im allergic to the antibiotics!
thursday: rash spread more, it was evil
friday: rash was clearer! went to band! i walked around the entire store without my crutches i was so proud of myself! then that night when trying to get into bed, i fell onto my leg really hard. I ended up reopening my main incision quite a bit (the scabs have split and it feels all raw) and we thought i tore my achilles tendon because i heard a pop and i was in such severe pain i couldnt breathe.
saturday (today): still hurts like crazy, incision burns. but i guess im doing better?
@AvyIsKingHi Avy, thank you for sharing your story. That sounds like such a painful and exhausting journey, especially having to deal with it for so long. It’s completely okay to feel frustrated and discouraged — anyone would in your place. I hope this space gives you some comfort and support while you go through all of this.
@Priyapjw1
it definitely has, and i know im less active now then i was at the start but all the support ive received here has been so valuable during all of this ❤️❤️
Thw moment you have all been waiting for has arrived
i am WALKING!
Without a limp! (well mostly) for the first time in yearsssss
i start pt on Tuesday
set a goal for myself, this time next year imma run a 5k
@AvyIsKing so proud of you Avy 💙
miss you
@LoveMyMoonflowers
miss u too, ilysm
@AvyIsKing love u too avy 💙 💙 good to see you
@AvyIsKing Yay that's amazing congratulations!!!!
Hey i hope you get over its so sad to hear but yk i believe you will be all better one day and have a good day keep smiling💕
