Who am I?

I am called Avi, I have struggled over half of my life bouncing from diagnosis to diagnosis. I have landed with BHJS or HJS. A joint syndrome that has torn my life apart. 

It all started when I was younger in elemantary school, with my right knee locking in place. It was weird it hurt and I couldn't move it. It quickly snapped back into place and I thought nothing of it. It happened another time a few weeks later, like the first time it quickly released. I mentioned it to my mother who seemed slightly concerned and told me to tell her if it happened again. The third time was a time I wont forget. I thought it was the worst pain I had ever felt. I was with a close friend's house who I hadn't seen for a while as she had already switched to the middle school, and I was still in the elementary years. I had been sitting on the floor with her playing with our polly pocket dolls, when I went to get up and my knee locked again. This time instead of clicking back to normal It was stuck. At the time It was the worst pain I had felt in my entire life. I held my tears back and quickly urged her to get her mother to call my own. I struggled to do anything. My leg felt frozen in its place mind numbing pain surged from my knee. What felt like hours was probably only ten minuted before my mother arrived. Carring me out of the basement and back home, never to return to my friends house. As soon as she placed me into the car and out of sight from my friend, I began to sob and wail in pain. I hated to cry infront of others but being a mere 5th grader I couldn't hold back any more. Once home my mother drew me a bath in hopes to soothe the pain while she called a doctor. After about ten to fifteen minutes in the bath I heard a loud pop, and I could move my leg again. The pain quickly returned but eventually soothed out after the bath and then some ice. It barely swelled up but was sore to walk on for the next few days. After that it locked probably upwards of 10 - 15 more times. Locking so fast that I didn't have time to react and unlocked just as fast leaving me with a leg that didn't support me once it reached ground. Then after that it stopped.

I switched from elemantary school to middle. IT was a huge shift in my life, I lost a lot of friends, and was going to a new place. I was an energitic and interesting kid. I was different. I had wild idea's, I thought of many things most people don't even begin to think about until they are way into their adulthood. In middle school we switched classes and had a lot more walking to do, plus a more extrenuous gym class. Halfway through my first semester my right knee started to hurt so bad it was hard to walk. Soon my left leg hurt too. My parents quickly noticed the limp and slower paced walking and decided I needed help. Brought me into the doctor. Who sent me to a foot person because my arches collasped and that had to be what was causing the pain. I had beautiful arched but they collasped as soon as weight was applied. I was given some arched that were spendy and sent on my way. Sure enough they helped. For a time, then they got worn down and replaced and seemed to help. I found that heels raised my foot enough that my arched would not collaspe and resorted to wearing a low heel instead and worked on holding my ankles up with muscle. 

I joined swimming in my seventh grade year to get into a sport that wouldn't hurt my legs and owuld be the least impactful sport. I not only loved it but I was an amazing swimmer.

I thought my life was good and I was pain free. Although that didn't last and soom my legs hurt again even with the inserts being used all the time. I was placed into PT for the first time, after they found out one of my muscles in my upper leg was not being used, and instead I used all the little muscles around it to do its job, and that i needed stronger muscles around my knee caps because thats what was causeing the pain. I went through PT for its course. Each day growing in pain but fighting through it because It was going to help, it would just take time. After months of PT I gained as much muscle as I could, but the pain was only worsening. I finished the course and scheduled more doctor appointments. 

I was given a knee brace to try and help the pain by keeping my knee cap in place because with how much my knee caps moved it had to be the root of my pain. Later that summer, I double sprained my ankle. Nothing major at the time.

From there my life went down hill. I became more depressed and had huge social anxiety. I was also dealing with this pain no one seemed to understand or believe along with struggling to find my own identity. It was my sophomore year I started cutting. To anyone who has, i am so sorry. It was addicting to me. I didn't do it to end a life or to punish myself. The first cut was curiousity. That I feared and quickly put an end to it, at least I thought, a few months later after I big fight I somehow found myself with the blade to my skin, my head hurt, I felt sick and everything else just ached. I cut again. Thats when it became an addiction. It wasn't the pain I longed for, but the lack of it. With each sharp sting and slice my legs were less of an issue. As a swimmer I qualified for state that year, but I also had limite my self only to the front crawl as the other strokes hurt too much to do. I quit after that season.

On one of the last good days that year a close friend of mine, noticed the cuts. Well everyone had noticed but had fallen for the same old lie. Its my cat, I fell. Everyone just went okay and lived with my lie, but She didn't She saw the ones I hadn't meant for anyone to see the ones that couldn't be explained. It was that night that I fell in love and made a promise to the love of my life to never bring harm to myself on purpose again. I would have lied my way through it but she was different, She made the promise that if I couldn't harm myself she couldn't harm herself, and If I did it again, she would bring a blade to her skin aswell. I have kept that promise for three years now. However about a month later my parent found out and I was sent to a place called Amberwing. A place I would go instead of school for a month and recieve treatment for my anxiety and depression and build skills to help manage. It was at this place that I realized I was falling in love with the girl who saved my life in a way, and my legs started to feel better. I confessed my feelings to her and we started dating soon after. I struggled with coming out to my parents who didn't quite accept me for who I am and I would struggle with it for the next few years. Summer came and went and she graduated and I went back to highschool. Ready for what life had for me. 

My legs had another idea, they worsened past the point I ever thought I could handle. It hurt to walk I could barely move my feet a full tile length away from each other. I was late to all my classes just because I could barely walk let alone climb the stair. I moved onto crutched for months. They told me there wa snothing they could do at the moment and told me to cycle through the pain killers. Ibprophen, alieve, asprin. Everything, every three to four hours. I spend half of my classes with tears rolling down my cheeks, after the second day people stopped asking, they stopped looking at me. Teachers avoided where I sat. My friends thought I was a fake. I felt so alone. It hurt to stand It hurt to sit it hurt to live. I managed barely through the rest of the year. Towards the end I had a trip to New York with my band class. After the first day and close to 30 miles on crutched from following a crappy tour guide on 2 hours of sleep and barely any food. I made the desicion to steal a wheel chair from the hotel. I did return it after the few days we were in new york before we left for home. That summer, I was sent down to the cities, to a bigger hospital to be check out for Rhumatoid arthritis. 

It was there I got the diagnosis I should have been given when I was 2. My knees bent backwards, when I stand. My parents had always known and noticed to some degree that my legs were a little wonky but the doctor never thought it was anything serious. I had given up the hope of ever walking again in my life. After that diagnosis I was given two strong braces and sent on my way. Everything seemed better. I maybe spend only five weeks of my senior year total on crutches. Using them when I knew I would and always wearing the braces. 

I thought life was getting better. I am now in college, I have cut out almost everything that involves straining my joints out of my life. I only do stairs when I can. I can't jump anymore, I certainly can not run. I miss it. I miss it all. I want to run and jump and play and have a grand time. My legs have gotten worse and Im in more pain. I have new knee braces and ankle ones two and an occasional wrist brace. I wouldn't wish it on anyone. I know I am lucky that I can still walk, but at what cost. I wish I couldn't sometimes because then maybe I would accept the fact I cant run and be playful with the other young adults my age. I want to play with my nieces and nephews but I cant.

I feel trapped in my own body. I have no one who understands what its like to watch your friend do the simplist things that you cant. I wish I could. I am constantly counting the steps looking for a differnet passage and thinking about how much energy I have and how I can take the shortest path because those five steps do mean a lot. I do have amazing friends but I don't know how to deal with this pain, when I hurt so much I can't even do the small and simple exersises I should and want to be doing.