Diagnosis: MHE (multiple hereditary exostoses)
Hey Everyone, my name is Katie. Most people look at me and don’t think that anything is wrong with me. And as much as I wish that was true, I have this thing called MHE. Basically they are just boney tumors.
I found out I had MHE when I was only two years old. It’s always been hard for me to look as myself as normal, even though I try so hard to be.
People don’t realize that just because I’m not in a wheelchair, or don’t look like I’m hurting that I actually am. All my life I’ve tried to hide behind a smile and don’t let it get me down. But there are days when I don’t know how much longer I can take the pain.
People at my school have called me ‘tumor girl’ or ‘freak’ or ‘scar zone’ and I try just to laugh with them like it doesn’t bother me. I try to go to school every day even though it kills me to write and a lot of the time it kills to walk. I try to go out with my friends and act like I’m not in pain. I try to do all the things a normal 17-year-old girl would be doing. But the pain that they cause me is unbearable. I’ve asked myself why me, what did I do to deserve this? Does God really hate me this much? But the worse part about it is when people don’t believe that I’m hurting.
I’ve had doctors tell me all my pain was in my head, friends thinking that I don’t want to hang out with them, and boyfriends break up with me because they couldn’t handle it anymore. Half of me wants people to see me when I’m down and in pain, so that they could see I’m not making it up, then maybe they could actually care about what’s going on with me and help me. But the other half wants people to see me as the happy, funny, and exciting Katie. School, is the hardest part, because people can me so mean.
My whole life I’ve gotten comments about a tumor on me or a scar saying “that’s so gross” “ew what the heck Is wrong with you?” I would go to the bathroom just so I could cry and not feel embarrassed about being in pain. I would call my mom to come pick me up because I couldn’t take the pain anymore. I miss so much school and fail so many classes because I’m in so much pain. I get so far behind and no one tries to help me get caught up. In ninth grade I had this friend, at the time we were inseparable, best friends. After my surgery I had that year, I failed almost all of my classes and the one person I was counting on being there for me came up to me and say “Katie you should try harder on your grades, I would hate to be you after high school.” After that we kind of faded away, even though I still wanted to be friends with her.
I try my hardest in school, but it’s 10xs harder for me than in it for everyone else. I remember when I had my first surgery, it was in eighth grade. I was getting five tumors removed. 3 on one leg, 2 on the other leg. My doctor told me that I was going to be out for 3-5 days. So I wasn’t that nervous. Don’t get me wrong, I was still scared. But all I was thinking about is after this these tumors won’t hurt me anymore. So I went into surgery and I woke up in the worse pain I could ever image. I remember screaming for my mom, I couldn’t stop crying. All I wanted was the pain to be gone. The 3-5 days turned into two months. I couldn’t leave my house, I couldn’t walk by myself, basically I was in my own world for two months. My brothers had to carry me up and down the stairs, my mom had to wait on me hand and foot. I remember always thinking when is this going to be over. Why can’t I have a normal life? I was so stressed and so mad at myself for being what I thought was weak because that’s what I always told by other people.
My next surgery I also got five tumors removed. one on my left arm, two on my chest, one on my left leg, and one on my finger on my right hand. This one was a lot easier than my first one. But it still hurt super bad. Once again I had to miss a lot of school, and I couldn’t go out with my any of my friends. Some of my friends would come and visit me every once and a while, and they could see how bad I was hurting. I still was thinking that no one cared outside my family.
And as a teenager it’s hard, I felt that I was alone and that no one cared how much pain I was in. Once again I just wanted all the pain to go away, I wanted to have a normal high school experience. After that surgery I remember crying myself to sleep. I felt like I lost all my friends and that there was nothing I could do to change it. So I made new friends going into 10th grade and I swore to myself that this was the year I wasn’t going to have a surgery. But soon after my 16th birthday I stated growing new tumors on my ribs and chest. It felt like I was getting stabbed over and over again, and no pain medicine was working to take away the pain. I couldn’t take the pain anymore, So I went and saw my doctor and he told me it was time for yet again another surgery. I immediately started crying because I knew how bad it was going to hurt. I knew that all the friends I had just made would start asking me about my tumors and what was wrong with me. And I was right. I started getting all the comments again. “what’s wrong with you? ” “why do you have so many scars? ” “Ew what’s that from” I still was trying to just to laugh it off and not let it get me down.
When I went into that surgery, I was super scared. It already hurt to breathe so I knew it was going to kill to breathe after it. And it did. I couldn’t sit up by myself or do anything I wanted to do. To me this surgery was pointless, cause those tumors are growing back. But at the time I was happy I wasn’t going to feel like I was getting stabbed over and over again. Two days before I had this surgery my ex-boyfriend broke up with me. I asked him why and he said that he couldn’t put up with it anymore and he wanted someone who wasn’t going to be in pain all the time. Even though we only dated for a little while it still really hurt. I started thinking to myself that no one was ever going to put up with this for me and I was never going to be happy.
Once I was healed, I got a new job and I was determined that my tumors weren’t going to hold me back anymore. Now don’t get me wrong, it sucks. I work at sizzler; I love my job. My bosses are super understanding and I’ve made a lot of new friends. When I started 11th grade my life was finally turning around. My tumors still hurt me super bad but I decided that no matter how bad, I wasn’t going to get a surgery this year. But of course I wasn’t that lucky. After I crashed a motor scooter, I broke my humerus. And it hurt. I found out that I had a cyst in my arm, but it was different than my other ones. This one was full of liquid but it wasn’t cancerous, which is good but, a couple days after I broke my arm my forearm started hurting, it was the most intense pain I’ve ever felt. So we gave it a couple of days and then we decided to go see my doctor. However, I got a new doctor because my old one was diagnosed with cancer, so I wasn’t as comfortable with this guy. Dr Jones X-rayed my forearm and thought that my tumor in my forearm had broken off of my bone, so of course I had to have another surgery. I asked my doctor if he could remove a tumor on my shoulder blade so I wouldn’t have to come back in for another surgery. He said yes but he warned me it would take longer to recover. But the tumor on my shoulder had been hurting me for a while and I knew I would have to get it out sooner or later. So I went into surgery and I got three tumors removed, which I thought would be nothing compared to five. However, Dr Jones told me and my mom that the tumors on my shoulder blade were under my muscles and he had to tear my muscle apart and scrape the tumor off of my bone. He said that surgery only was worse than getting five tumors removed. And I still had a broken arm and my forearm had the tumor removed. The pain this surgery caused me was horrible. It was by far the worse surgery I’ve ever had. I had this surgery two months ago and I’m still recovering, I haven’t been to school the whole quarter and I’m so far behind. I think that next year I’m going to be going to online school, because I’ve missed so many days, failed so many classes, and I don’t know if I can take another year of all the jerks.
For this surgery, I couldn’t even write because my right hand was completely broken. It still hurts to move my fingers, I can barely move my arm up and down, and my back still kills. So me doing any school work is impossible, especially with the pain medicine I was on. So my mom and my sister have to do all the writing and I felt horrible. I felt useless. I couldn’t sit up or sit down by myself, I couldn’t shower by myself, I couldn’t even put on my own clothes. My mom and my sister had to pretty much take care of me like I was a newborn. But hopefully the pain will be gone and this surgery was worth all the pain.
If it wasn’t for my mom, my sister Megan, and my best friend Kayleigh I couldn’t have done this. They have helped so much and I often feel like they are the only people who have ever cared about me, and all the pain I go through. They have always been there for me, even if they don’t know it. I would do anything in the world to make sure no one else goes through this, or anything like it. I want everyone to know that if you’re going through something similar, or you feel like you can’t do it anymore that I’m here for you. I Care about the pain you are going through. Even if I don’t know you, I would love to help in any way I can. Even if you just need someone to talk to. I will be your friend, and do everything in my power to make sure you are being helped. It might be scary to ask for help, you might feel like no one cares, or that there’s nothing Any one can do, or that people won’t believe you’re in pain. But I will, I promise. I Care about you. Thank you.