Well, I thought I would share a little about who I am and what I feel. I have spoken to some people regarding my personal life of a challenge I recently had and was told that I should share that story. So recently, I have been thinking why not?
My name is Joseph Muia and I live in Stephens City VA. If you never heard of it, it is just South of Winchester VA. I am married to my precious wife Stacey who was born in Uniontown PA. Yes she is a die-hard Steelers fan as well. We have a son name Anthony who is the best thing that ever happened to us.
How did I become a Steelers fan? I remember watching football with my dad when I was seven years old and my father turn the television station and Pittsburgh Steelers happened to be on the other channel. I said “Dad who is that?” He stated, “The Pittsburgh Steelers, they are a great team.” I had no idea what being great was, but I knew I love their colors. When my father turned the station back to the Redskins I remember saying to myself, I rather watch the other team because they were looking pretty cool. My dad every so often would switch back to that channel and I got to view them more and more. The more I saw them play the more I fell in love. I was twelve or thirteen when my Uncle Phil got me a TV as a Christmas present. That was when I was able to view them every Sunday until Baltimore Ravens came to Maryland. God I hate those Ravens!
So my passion is deep for the Steelers but I honestly I can’t say that I am the most die-hard fan out there. I have viewed profiles after profiles and the things I have seen and read truly made me smile and happy to be part of the Steelers fan base. As well, be connected with good people every day talking about the love we have for the team and players.
So now the story I have shared with others that they wanted me to talk about. In July 2010, I was sitting at work and I started to receive twitching and shooting pains through my whole body. I didn’t want to tell my wife for she would want me to go to the emergency room. So I kept quiet. My brother-in-law and his family came to visit. They were leaving the next morning to travel to North Carolina. That evening my brother-in-law challenged me for a basketball game. I am not the best player but I can hold my own against him. I started to shoot air balls and couldn’t run the court against him. He beat me three games in a row. On the way back home, I mentioned I was tired and felt sick. Of course just beating me on the basketball court my brother-in-law thought it was just an excuse of why I lost to him.
The next morning I could barely move. I said goodbye to my brother-in-law and his family as they left early in the morning and tried to go back to sleep. After two hour or so I told my wife who decided to take me to the emergency room. The doctors at Winchester Hospital stated it was a 24 hour virus that is affecting the muscles. The next day I felt ten times worse and couldn’t lift my leg higher than 6 inches off the floor. At one moment my left leg was paralyze and couldn’t move it.
After 48 hours and I just seem to be getting worse. I called my primary doctor on Monday morning who fit me in right way. The doctor totally thought something wasn’t right and told me to go see a Neurologist doctor. Right way they fit me to visit with the doctor to see what is truly wrong with me. Well, test had to be run but my new doctor who I never met was pushing that it was a rare disease called Paraneoplastic. After running twenty one different tests and taking time to get the results back it was confirmed, I had Paraneoplastic.
Telling me a word I never ever heard before did not mean anything to me. It was when the doctor started to tell me what it is, when I started to know that I was in a world of trouble. To sum it up Paraneoplastic is a disease that comes when cancer is present in your body. Your body has cells that fight off infections and when it senses something is wrong, they attack that cancer cell. However, with Parneoplastic the tumor cell is so small that your body fights against itself. So your body is attacking your muscles tissues which could total disable you. The life span with this disease is two to five years. Most people don’t make it that long and the side effects are very bad. They are so bad that it can make you bedridden, wheel chair bound, or walker bound. You can have slur speech, memory loss, vision problems, and sensory loss in limbs.
So here I was told by the doctor that I have two to five years to live and will most likely not able to do the things I love to do anymore. The thing called bucket list before you die might not be something I am able to do since my body is fighting itself. So now the second opinion would come from Mayo Clinic from Rochester Minnesota. Again, it was proven that I have Paraneoplastic.
So, now the phone calls of where I should go and who should be my doctor. We called a local doctor who stated he didn’t want me. That he has never heard of this condition and wanted me to get the best cancer doctor. So lucky for me was I was able to get fitted in John Hopkins. With that the name of my doctor was revealed to me. It would be one of the best doctors in the Nation. I thought how lucky can I be?
When I met the doctor he was shock how good I looked. Yet when looking at the blood test he knew right away it was true. So he reached out to another best doctor in the nation and joined hands with him. This doctor happened to be living in Spain at this time teaching about the disease.
With both doctors calling the shots I would go thru tons of X-Rays, MRI’s, and Cat Scans but no luck to find the tumor. Still I had that though of two to five years in my head. Nobody would tell me otherwise. The reason they never did say anything is because they didn’t know any other way but to go off what they knew of people not making it past five years.
During this whole time, I was having the worse pain in my life. I would have up to four hundred twitches and three hundred shooting pains a day. They would hit anywhere on my body at any given time. Honestly on a scale they would hit so hard that I would rate them from a six to a nine on a pain scale. Felt like a nail driven in my side. It would feel so bad at times that I literally thought somebody was screwing a screwdriver in my neck or arms. The pain was real and you couldn’t do anything to stop them but to scream out and cry or brace for impact.
So if you are told you are given two to five years and you are having pains every single day, what makes you want to live? What makes you go to work? What drives you to greatness? For me, it was my family! It was watching my wife not give up. It was my son who was a little over a year old holding me and giving me kisses when I was in pain. To know that they needed me just as much as I needed them, it allowed me not to cry of where I was in life and let the disease win. So I decided since the disease wants to win and I wanted to win it would be a hard tough battle but in the end, I will be the champ. I just needed one thing to do though because all the time I worried more about my family instead of myself, and that was to take time out for me to cry. So I never will forget it on December 16th it hit me and I allowed myself to cry for hours. I had my pity party and that was the last one I was going to have. This disease will not beat me! I will join with Christ and we will walk hand to hand and fight it together. After all, I am not living Joseph world! I am living God’s world. So knowing that everybody at some point will have to carry their cross I finally accepted what I had and what I would do to win.
So, I got up every morning and went to my son room. I made sure he got up and fed before I drove him to daycare. I continued to work my eight hour shift at work and come home. The pains would follow me the whole day and I even cried at work. I will never forget one day we was in Wal-Mart my family and I and a pain hit me so bad that I had to grab the banana stand, and I said “DEAR GOD, O’ LORD!” There was a young girl and she looked at me so hard. The look though was more like I was a crazy person. Then I realize, I think she thought I was saying those words like praising God for the banana to be in front of my eyes.
If my son would wake up in the middle of the night, I made sure I dealt with him and not my wife. My wife would get mad because she felt I had to rest and she would do it all for our son. I know she would have done anything because she is a great wife and mother. I had a reason of why I wanted to do it all and that was to show the disease you don’t have control over me. I am not going to quit and have you eat my muscles. I will over power you! I am not going to cry and ask God “Why me?” I mean for real, why not me? What did I do that is so special that I get the gift to live the best world than you? We are all sinners and we all have to carry our cross. I even got to a point where I said “Lord, if I am carrying my cross, please let me carry all my family and friends cross as well.” I will honestly say the pain got worse for me when that happened. I guess it is true in the bible, ask and you will receive. I did ask and I got the pain and more crosses nailed to mine.
After more visits and tons of testing to try to find the tumor it was told by John Hopkins doctors that they can’t find it. That they would believe that I don’t have cancer. The tumor we were in search for was most likely a benign. So cancer would not be in my body but a tumor would be and my body will still detect something is wrong. So I would still have paraneoplastic and my body would still fight itself. So I would continue the shooting pains and twitching until the tumor is found or my body destroys it.
I don’t know the exact day but I got the worse back pains I ever had in my life. I was taken by my wife to the emergency room and they only gave me two bags of IV. They released me and at the time we happened to be in Uniontown PA to see her family. Now before this every day I would receive some kind of love by somebody. I would get a hug, phone call, prayer, by tons of people and they kept saying God would heal me. I noticed when I got back from the ER that I wasn’t having pains. I was not even having twitching anymore.
When I went back to John Hopkins and I would be visiting with a new doctor because the other two has past me on to him. They were done with me and now this new one would take charge. When I told him what happened to me in Uniontown PA the doctor stated he thought God healed me.
So, what is going on with me today? Well, I still tested positive for paraneoplastic and very rare do I have twitching or a shooting pain. John Hopkins stated I am less than 1% in the nation to have this disese without cancer. Now remember just with this disease I you could have or be bedridden, slur speech, memory lost, wheel chair bound, or walker bound. Instead, I am working a full time job. I am able to talk your ear off about Steelers and play with my son and wife in the back yard.
So thing are truly good my way and I was told by many to share this story with you. So I thought it might help somebody when times are down not to give up on their faith. With you walking with Christ and knowing that you will win, you can be a champ! If you fall down and say I am going to lose this battle than I would say you will lose. If you stand on your feet and say I have to live because I have so much to do left in this world and I love my life and I will carry this cross. You will win! Yet don’t forget though, when it is your time it is your time because again like I said before, we are not living our world. We are living his world.
Always put your best foot forward though and do your best to live the right way in life. For so many of my family and friends were watching of how I would handle the two to five years and the pain of feeling like nails driving into my skin, and what they saw was somebody never giving up and somebody continue to live their normal life just like they did before finding out they had this disease.
For the people that are wondering, I even got to play basketball against my brother-in-law who could not beat me. That is the way it should be. The times might get low for me or the Steelers but in the end we will show how much we are truly winners!