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 gives you a giant festive tiny hug ❤squeezes you tightly ❤ it's very sad how one issue can effect so many more areas of our body. Sympathises with your pain. And with feeling isolated during all this ❤ huggs you again ❤ I pray you will be ok ❤
@Tinywhisper11
Thank you ❤❤ it's really hard sometimes. It isn't as bad as it could be.
I'm supposed to have surgery after I get a test done and I might end up getting my one hip replaced and it's just really really scary
@AvyIsKing I know it's scary sweetie ❤ I'm sorry you have to go through this. But it's amazing what doctors can do theese days, and if it helps with the pain then that's a good thing right? Your gonna be ok ❤ it's ok to be scared, and I'm right here for you, every step of the way ❤❤ hugs you tightly ❤
@Tinywhisper11
Hugs tightly
I have a dr appointment Monday to see if my inserts made it worse 🥺 I don't trust doctors what so ever and right now the only option on the table is breaking alot of my bones and using screws.
Part of me has given up with all of this
@AvyIsKing how come you don't trust doctors sweetie? And yeah! The thought of them doing that must be terrifying, God bless you ❤ but believe me, it may be hard to trust someone, but they know what their doing. Your gonna be ok ❤❤
@Tinywhisper11
they never believe me when i say how bad the pain is. They never trust me 😥 they are mean doctors. Never really talk to me about what I want or need or how I feel
@AvyIsKing hiiii :3
So today I went to go lay wreaths on veterans Graves and it was really embarrassing because I couldn't stand for the whole ceremony. My legs couldn't handle it and my mom still made me stand to show respect. I was so embarrassed because thete were war veterans right near me staring as I'm struggling to stand. They gave everything and I've just existed.
It's also really hard to drive. I'm trying to get my permit but it's really hard to drive it's just painful and my foot will tremor and twitch and I'll loose control of my driving foot and I can't switch to my good foot. It hurts 🥺
I just wish I could be Nirmal
@AvyIsKing awww honey it's really hard, I understand that ❤ and Your so young it's a lot for you deal with and have to go through😞 do you use a wheelchair? Cause of you do we can have races♿♿😁 I know those war heroes have gone through unspeakable things. But so are you right now, so don't think bad of yourself. And next time tell your mum, if she wants you to stand, then she is gonna have to pick you up ❤ what scares you the most right now? Remember it's ok to be scared ❤❤
@Tinywhisper11
i actually dont currently use a chair but we can still race! I will totally tell my mum that 😂
and what scares me most is the possibility of never fixing this. Its just getting worse. Not sure how much longer I will be able to walk
@AvyIsKing oh they do sound mean doctors😥 I understand your pain levels. I start out the day in a bearable kind of pain, but end the day wanting to cry from pain. People don't seem to realise how mentally and physically draining constant pain is. Hugs you gently ❤ I know it's hard and the uncertainty of what is gonna happen to you is a whole nother level of pain, but for now let's try and think that it will get better, that will be in less pain, after the operation, or whatever treatment they decide on ok. I really hope you will be alright, I'll keep you in my prayers ❤ for now rest when you need to, and be kind to yourself🤗 gives you a giant festive tiny hug ❤❤ I'm right here for you ❤ always
@Tinywhisper11
I really hope so. My boyfriend has hope but thats mostly because i hide how bad it is. And you are right about the exhaustion. Ive been in pain my entire life but this is non-stop and its really draining.
Im hoping they can fix it. Ive looked into the operation and the recovery time is a minimum of a year 😬You are in my prayers as always. Hugggssssss you are the best lola buddy❤️❤️❤️❤️❤️
@AvyIsKing you are incredibly brave and strong. And I believe they will make the right choice for you, and the pain may not completely disapear but it will get much better ❤ it's tuesday here, did you have the test done?? And please don't look things up on the internet they always tell you the worst of what can happen. so don't pay attention to it😁 I know you hide how bad it is to your mum and boyfriend, but you don't have to stay strong here, you can cry and vent here as much as you like. Get it all out of your system ❤❤ gives you a giant festive tiny hug ❤❤ I'm right here for you ❤always
@tinywhisper11
Lola you are the absolute best, I can't even explain it. I didn't have the test done yet, and they still haven't called even though they were a month ago ): I feel forgotten. Today I have an appointment to see my orthotic (I didn't spell that right) lady. I don't want to go. It just causes unnecessary pain and nothing she has done has helped me in the slightest. It's just frustrating because no one seems to care at all about helping me, even though im at my wits end. Maybe that's because i don't talk at doctors appointments but i try.
And thank you for helping me make this a safe space. It really means a lot. I don't really talk about any of this a lot because I hate being pitied. Like yesterday i was at the mall with my boyfriend and i wanted to sit down because my foot really really hurt so we did but then he just kept checking in on me and making sure i was ok. I felt embarrassed.
I love you <3 <3 hugsssss
so i got really bad news at the dr today.
my condition has gotten worse, meaning its only going to continue to get worse for the rest of my life. My doctor looked at my hands and the way i stand and shes worried its not just my feet, that its a condition in itself, something that should've been fixed awhile ago.
I've been ordered to stay off my feet as much as possible.
i was hoping for good news. i wanted to be able to run again. i wanted my life back. its not supposed to get worse its supposed to get better. it was supposed to get better.
i stretch every *** day, i do everything im supposed to do, and its not *** getting better.
i give up.
I feel pointless and helpless
@AvyIsKing hey! That's just one doctors opinion. It's not time to give up yet ok? Do if they think something else is causing it. Are they gonna do tests and treat you for that first? You will get your life back ❤❤ you will be able to walk comfortably again, everything will be ok ❤ I know it doesn't seem to hopeful that any thing will get better. But it will, the doctors will find away, even if their meanies🙂 gives you a giant festive tiny hug ❤❤ try and have a relaxing Xmas, and stay of your feet. Perhaps for now use the wheelchair. I know that's not a solution you want to hear, but maybe just use it when your out and about, until you hear what treatment plans they are going to do. A wheelchair is not a sign of pity, or giving up. You will get better ❤❤ squeezes you tightly ❤
@Tinywhisper11
i really dont know what the plan is. I know that the plan is to have that one test done whenever they call, and i guess we go from there. im getting new inserts even though i got new ones in august. we don't have a chair but im just gonna lay in bed a lot.
i really don't know if im ever going to walk comfortably and that idea is scary. i want to be a surgeon myself and if i cant stand then i cant.
squeezeeeeee
thank you lola 🥺
Someone just told me all of my problems would be fixed if I just went to church. I admit I have lost my faith but that's because to keep myself safe I only allow myself to believe in things I have proof of. My grandma is a church going woman and she has gone for years and yet she still suffers. So much. It hurts me.
I've tried everything and I'm open to prayers but I literally just got told that my issues are because I'm a heathen and because I don't follow a certain religion. I'm just trying my best to walk right now 🥺
I guess it's worth a shot
@AvyIsKing religion shouldn't be pushed on anyone. That person had no right to say that to you😞 your very young, and at your age it's very normal to explore beliefs and make your own mind up. I'm sorry to hear about your grandma😢 and with everything going on right now with your health, you have every right to question everything about this world/life. And hey no walking, that's an order... Unless you need to go to toilet. Do you have a tv in your bedroom and things you can do while in bed?? Not with your boyfriend though😂😂 the best thing for you right now is to relax in bed, until they can work out a plan for treatment and tests. I know it's scary, very very scary. but you will get through this, everything will be ok ❤ and I'm right here with you, every step of the way ❤❤ hugs you tightly ❤
@Tinywhisper11
I don't have a TV but I have a laptop I watch shows on, and I'm excited just to take time to rest these next few weeks. It is scary but I also need to remember I'm not alone ❤️ even though this is isolating, I have so many people. I love you tiny 🥺🥺❤️❤️
@AvyIsKing I love you too sweetie ❤❤ laptop is better than a tv, it does more and you can move around and get comfy watching it ❤you do have people around you, so no you are not alone. But I also know the pain of feeling like a burden and not wanting to share with your loved ones certain things about yourself, that's why I'm here ❤ you can talk to me, I'm here for you ❤ yes a break from school, and that added stress. Do you celebrate xmas? Do your mum and boyfriend but presents? Cause you deserve 3 million presents. Oh and tell your boyfriend doctor tiny said he needs to pamper you and give you lots of neck massarges😁
@Tinywhisper11
Yes I celebrate Christmas! It's one of my favorite holidays, because I love buying gifts. I bought my boyfriend and I matching t-shirts 🥺 because I'm adorable. I know you love Christmas. And you are right, I hate burdening people.
And I'm definitely telling him that, but he already spoils me 😅 the thing is, when you are attention and affection starved as a child you get *clingy* and I'm just very very clingy.
Thank you for supporting me somuch, it really really means alot ❤❤❤❤,
@AvyIsKing you are adorable ❤❤❤gives you a giant festive tiny hug ❤❤ have a merry Christmas sweetie ❤
So I don't self diagnose but I got really really worried about these genetic diseases and so I was describing my symptoms to an ai bot
I was sure this was a bad idea.
I found something that matches every other symptom I have, including my feet. Even if it's not what I have I feel comforted by this idea. I get nerve weakness in my hands and legs and they just give out sometimes for no reason. I was worried it was nerve damage because of my past that just waited to show up til I was in adolescence. Let me share what I found, again not a diagnosis, I just feel comforted because even if it is something crazy I'm not alone.
And honestly because I spiral and panic TW brain tumors run in my family and I get chronic migraines as well as these odd symptoms so I was just worried
Even if it isn't real Idk spiralxis calmed
Because of ai 😭😭 *paranoia goes brrr*
@AvyIsKing see now this is exactly why I said not to look up symptoms on the internet!!! It always tells you the worst, and makes you believe it. But dont panic, the internet is never right when it comes to diagnosis. Gives you a giant calming festive tiny hug ❤squeezes you tightly ❤
@Tinywhisper11
hugs ans squeezes . i Know I just desire *answers* that I don't have ):
@AvyIsKing yeah I understand, it's so easy to do. And when pain and fear consumes, you just need to know answers. Bless you ❤❤ hugs you tightly ❤
Today has been a really bad pain day. On a good day pain is about a 5-6. The past few days it's been about a 4 when I wake up and a 7cwhen I go to bed, minus the few little "attacks" I get through out the day where it will be searing and brain melting, about a 9, for about 2minutes, then calm down.
Since it's my sister's birthday I've been on my feet alot, helping arrange a scavenger hunt and doing party things and also because it's cold, pain has been a 9 since about 9 this morning. I avoided taking pain killers for as long as possible, but I'm about to leave the house, so I used my high strength pain cream and took 2Tylenol. I hate using pain killers, they make me feel like I'm weak and I dunno I just hate them. I'll use my pain cream if I'm going out or Tylenol for long days but I like never double use them both.
Hopefully I'll come home and sleep through it. I have a feeling it's going to be a long painful night.
You can't see it on my face how much I'm hurting because I'm so used to it. If you loom really closely, according to boyfriend, my eyes look on the verge of tears and my eyebrows get scrunched when it hurts really bad and my limp changes. I try to hide my pain as much as possible. But apparently I look like someone stole my bunny 🥺 not my jeffy boy.
If someone stole jeffy id stab them, not be sad 😅😅😅😅
Anyway wish me luck in my endeavors
@AvyIsKing good luck sweetie ❤ and yep the face is always a pain giveaway. How is jeffy? My bunny had been ill the past month or two. But he's not having seizures anymore, so I think he's gonna be ok ❤ I'm sure after that warning noone will steal jeffy😂😂😂😂😂 I hope your sister had a nice birthday ❤ although perhaps next time you should be in charge of sitting on the side, shouting orders at everyone. You can be the organiser and director of the party😁 how is your pain now? Did you manage to get any sleep??
@Tinywhisper11
Jeffery is sleeping. Im glad gizmo is on the mend ❤️❤️ sending prayers.
Pain is still high and I haven't slept yet but I'm finally in bed.
And hopefully by next year ill have this all fixed aha fingers crossed
@AvyIsKing can you cross your fingers for me too ❤ mine don't cross.I only got two fingers and thumbs on each hand left. But I got my most important finger😁 yep! My middle fingers😁😁😁 I actually type with my middle finger, so I'm secretly flipping you all off as I type 😁😁😁😂😂😂😂😂 goodnight jeffy ❤ gizmo is playing in his digging box. Try and relax now, hopefully you can sleep soon. Shoos! Away the pain, shoo! Pain shoo!. I hope that worked ❤❤ don't be afraid to take another pain killer ok? Goodnight sweetheart ❤ tucks you into bed, gives you a kiss on the forehead. Checks for monsters under the bed. Nope no monsters, just a few zombie frogs😁 you will be ok ❤❤❤
@Tinywhisper11
awww lola you are so sweet 🥺 i did take more painkillers and now I talk to boyfriend until I pass out. And i type with my middle fingers as well! No sure why but we can flip everyone off together🥺
@AvyIsKing yes let's flip everyone off together ❤ my precious little elf ❤ did you sleep ok? I just read and replied to your last post. You've always been so kind and supportive of me. And I love you ❤ how are you feeling today?
@tinywhisper11
I slept great! I was on my feet alot the past two days so I'm in a bit of pain but my mom let my dog sleep with me so I feelhappy! How are yoy doing?
@AvyIsKing are your parents abusive towards you? I'm sorry I know I should mind my own business, but I had to ask😢
yaaay doggy cuddles ❤ does doggy and jeffy get on well? Try rest your feet toay. I'm ok😁 a bit lonely. And when I'm alone to long I think, thinking is not good for my brain. But I'm ok just gonna stay in bed and drink tea all day ❤ Xmas eve tommorow, does you and your family have any xmas eve plans??? Don't forget to wear your batman Xmas pjs😁
@Tinywhisper11
My parents are :/ it's more emotional and mental then anything. Mom doesn't get violent with me anymore. And of course I'm wearing my batman pjs! Jeffy and my dogs get along really really well! Except I'm not home so I didn't have jeffy last night ): Christmas eve my brother (ew) my cousin (a little less ew) and my dad are coming to my grandma's so we will have a full house :0 and we are gonna eat a fancy dinner. I migjt get my brother to wake up early and watch the tree like him and my sister used to do when we were little. I dunno. What are your plans?
@AvyIsKing well have lots of fun and avoid the eww people ❤ aww you all used to sit and watch the xmas tree🤗 that's a cute memory ❤ it's still raining and windy out😞 but I'm gonna go sit outside anyway, I want to just go be with my son for a while ❤ be safe ok? And eat lottttsssss ❤ merry Christmas sweetie ❤
@Tinywhisper11
I will if you do ❤❤ merry Christmas! Today we made lasagna so my foot hurts cause I was in my feet all day ): buttttt tomorrow will be fun !
@AvyIsKing 😞 poor little feet, hugs you better ❤❤ you know I've never tried lasagne. It looks nice though. I'll be safe, I'll put my breaks in so I don't blow away😁 I got Turkey sandwiches for xmas day ❤ and I'm sure I'll eat some chocolate too ❤❤
@tinywhisper11
yessss chocolate is the bestest!! Lasagna is amazing hehe I also made custard and cupcakes!
@AvyIsKing cupcakes😍 I want some. But no custard😝