Thursday, October 23, 2014

My battle with Juvenile Dermatomyositis

When I was 10yrs old I started to get an itchy rash around my waist line. We didn't think much of it and just put cortisone cream on it. Well a few weeks later I was in Bufflo NY with my parents for dog shows. We were walking downtown and all of a sudden my ankles and knees hurt so bad and I felt very weak and fatigued. When we returned home we went to the doctors. They doctors thought that I had lymes disease.  They started to treat me as so but it was not working and I was getting worse. Then my body started to get red purlplish color on my face, my neck, and all over my joints and hands. Then thought perhaps I had lupus but tests came back negative. With pulling all resources I ended flying to Chicago to meet a specialist named Dr Pachman. The first day I meet her and took all the tests she diagnosed me with a disease called Juvineil Dermatomyositis. When we returned back home we went to a hospital in Pennsylvania. The Dr there worked with Dr Pacham and they came up with a new treatment idea and that it had to be signed off on by my parents. The Dr told my parents that I may never walk again. My father took that doctor outside the room and roughed him up and said don't you ever tell my son that again. I kept on the new treatment in the hospital but it was still getting bad and it got to the point I couldn't even lift a fork to feed myself. When I was able to finally go home things were not any easier. Everyday I had to have a nurse come and give me my IV. I also had to do physical therapy what was the most pain ever. I was actually using cans of soup as weights to help build my arms. It was really hard and I always was upset with my parents making me do it because it hurt so bad. My friend Desmond Spady took off most of his summer to keep me company and got me to start learning to catch a football again. I will never forget what he had done for me. Then a year later I went back to school. When I arrived kids were really scared of me. The reason is because I was really fat from the side effects of Predinsone. I remember hitting the play ground and the ball was thrown to me and not one single person would try to tackle me. So next play I asked for the ball and as I ran one of the students just stopped in front and did nothing. So I slapped him in the head with the ball and said tackle me pussy! He laughed and ended up knocking me to the ground. Everyone ran over to check on me and I got up and laughed and said about time you guys start treating me normal. That same year I enrolled back into football and my second game back my best friend in the huddle said we are not running coaches play this one is for Brandt. So he called a flea flicker play and told me to just run as fast as I could and the ball was coming to me. The quarterback pitched the ball to Desmond and I ran as hard as I could. Desmond through the ball to me and I caught it and broke two tackles and ran 75yrs for a touchdown. All my teammates and coaches cleared the bench and came to celebrate with me. That was the first time since I was diagnosed that I truly felt like I was beating this disease. A week later my mother and I went to see the Dr that said I would never walk again. My mother made him come into the waiting room where there was a VCR. She popped in my game tape of my touchdown and made him watch it. She then said this is why you never tell someone they won't walk again. I loved it but I feel my mother loved shoving it in his face even more then I did. After all the confidence I received from this it drove me to get out and work harder then ever on preparing for the next football season. The following year I ended play footbal and joined the wrestling team. The wrestling was really tough on me but I ended up getting the starting spot on my team. I entered a wrestling tournament that year and placed 3rd. My last match I broke my finger and my father said come here now. He took me behind the stands and said you know pain so now just deal with it and broke it back for me. He grabbed some tape and taped them together and said now go get that win. That is actually what I did. I got back on the mat and remember what he said. I know pain so just deal with and use it. I ended pinning my opponent and when they raised my hand the tape was coming off and my finger was dangling. The coach screamed at my dad saying you told me it was ok. My dad said yes it is ok. Ok for my son but probably not for others. This is when I learned pain can make you stronger. The more you endure in your life the more you learn to deal with it and use it for power. After that amazing year I even had even greater thing happen to me. I was told by my doctor I had gone into remission. My life was back to being normal and I could do the things I loved. I spent 5yrs feeling great and playing sports until one day that dredful rash started to come back and I was feeling weak again. Sure enough my disease had came back. I went into depression when I heard it. I was now in high school and the last thing I wanted was to be in high school looking fat with rashes all over me. Luckliy we attacked fast and hard enough that I only needed a few treatments and I was back into that great word remission. Then when I turned 16 I ended up having another attack and this time I had to stay in the hospital for awhile. Luckliy it was in the summer so I was out of school and didn't have to explain anything to anyone. It was only a one month stay and I was back to remission once again. Then when I hit 23 I was once again under attack. This time was hard because it was attacking my heart and all my muscles were just eating away. This time it was about a 6 month stay in the hospital. As I always did I ended up beating it back into remission. I took up mixed martial arts after I was back to normal and was winning medals like they were giving them alway. I took mixed marital arts as my new passion. I ended up training and managing some of the biggest names in the sport. Then at the age of 33 I was once again hit with an attack. This time has been one of the hardest attacks yet. It has hit my lungs to where they were starting to collapse. Then I was told I have rheumatoid arthritis, blood clots in my lungs, and avascular nercosis and plus testicular cancer. The bone marrow in my hips and knees were not getting enough blood into bone so they started to die and collaps. This is when I was once again told I may never play sports again. This time it may be true but like my father would say you will you just have to want it enough. So I am now battling all this to make the comeback like I always have done before. 


  1. You are an inspiration to me. You will beat this!!! Sending big prayers and thoughts of hope to you:)