Tuesday, October 28, 2014
The fight continues
The alarm goes off I wake up and turn it off. I swing my legs off the side of the bed and try to stand up. I fall back onto the bed as my body said not just yet. I take a few minutes and try again. Success I have made it to my somewhat one good leg. I then take a deep breath and start to hop my way to the bathroom. After I was done I hopped back to the bedroom. I make my way to the bed and fall onto it. I laid there for about 10 minutes while I caught my breath as my body was worn out from my little 10 foot excursion. When I finally caught my breath it was time to get dressed. I get my underware and jogging pants (not that I will be jogging) on. I then go to put on my shirt. I put my arms in and as I put them up to pull down my shirt my shoulders get a sharp pain so I quickly shake the bottom of the shirt down and rest my arms. It is now 30 minutes later from when I woke up. Shoot I'm going to be late. I try to ignore the pain and start getting my socks and shoes on in a hurry. I then get into my wheelchair and make my way to my car ride. On the way I was looking forward to stoping at the Krispy Cream that's accross from my second home University of California Irivne Hosptial campus. This little piece of heaven I receive from the fresh hot warm donut and the taste of the ice coffee that washes it down is always my treat to myself for having to go to that dredful second home. As we exit I get more excited as the Krispy Cream is now getting closer. I then looked up at the digital clock on the radio and realize we only have 5 minutes to my appointment. Dang it no time to stop. I say don't worry about it I will get it after. As we pass I see the hot fresh donuts ready sign on. Ugh I was really hoping to get that right now. I get dropped off at the front of my specialist's office building. I wheel myself to the door in my wheelchair. As I get to the elevator my arms burn from the muscles it took to get me from there to the elevator. The doors open and I see the double doors with the sign that says "specialties". I push the button and roll myself in. I sign in and wait. As I look around the waiting room I see other people waiting in wheelchairs with their heads low looking lifeless. I then think to myself I wonder if I look like that. Before I could think more on this I hear my name being called. It's time, it's time to go hear either good news or bad. After a 3 hour visit I was ready to leave. The door opens and I hang my head as I'm wheeled out in my chair. The news wasn't good. The doctor said he feels I am delcling. He also said that besides my knees and hips he now feels I may have Avascular Necrosis in my shoulders as well. This news wasn't what I was expecting. As I finally make it out and back to the car I get in to head back home feeling defeated. As we leave we come up on that place that holds a little piece of heaven. Want me to stop asked Jennifer? I hung my head and said no let's just go home. My stomach felt empty but I had no urge to eat as inside I felt empty and defeated. We continued on and made it back to the house. I get out get into my chair and make it back to bed to lay down. A few hours go by and I receive a call from UCI. It was the Dr who is in charge of my drug trial I am on to help find a cure for Juvineil Dermatomyositis. She asks how I felt and I told her how I didn't feel well and what happened with my appointment with my specialist. She then says well that's the reason for my call. She says she hasn't spoke to my speiclaist yet but feels that with their testing they see a decline in me and is going to make an executive decision to end the drug trial. She said the reason they made the executive decision is because she knew I wouldn't pull myself off of it. She said "you have been an outstanding patient and such a fighter. I knew you wouldn't call it quits yourself. So I have decided to call it for you". I told her deep down I was thinking it but didn't want to fail all my JDM warriors so I didn't say anything and was just hoping it would turn around. My mother suggested it and so did my other loved ones plus others on my social media sites. So I told her that it saddened me to hear it but also felt a little relief I didn't have to tap out and that they threw in the towel for me so I didn't have to. I hung up and it all hits me. The empty pit in my stomach feels even emptier. My head hangs low and I now feel even more defeated. I'm now slumped in my chair lifeless like those I saw either in the waiting room. Depression kicks in and I fell like I have failed everyone. Deep down I know it wasn't my fault but I still felt as a disappointment. I really wanted this to be a cure so no other child ever had to deal with this disease. It felt like losing a fight that you trained harder then you ever have before and it ended with a loss. I keep all this bottled inside my head as I try to keep a positive look on my face for my daughter who just got home. We talk for a bit she told about her day and then went out to play with her friends. I hear a knock on the door and it's my friend Charles. He came over to just hang out. We hung out for a bit then decided to go over to my neighbors to check out their kitchen as my buddy Charles has a kitchen company and they loved what he did for mine. I rode my motorized wheelchair down the street and we were greated by my neighbor Julian who was outside. I introduced them and after we went to go check out the kitchen they want remolded. I started to wheel towards the doorway and realized after a few attempts that I wasn't going to be able to make it in the doorway because my chair wouldn't fit. I said don't worry I will hang out here for a fit and get fresh air. As I sit outside I'm by myself and I feel embarrassed and worthless because I couldn't make it inside because of this stupid chair I have to be in. Then the neighbors son came out and started to shoot his basketball. The ball ended up bouncing into my lap. I was about 4 feet a away and went for the shot. I pulled back the ball like I have done millions of times and went to release it. As I pushed forward to release the ball it felt like I was throwing a bag of bricks. I watch the ball leave my hands and watch it not even come close to the rim and fall to the ground. I couldn't believe that I couldn't even throw it high enough to hit the rim. I once again felt defeated by my own body. I sucked it up as I didn't want the little boy see me defeated. As I sat there and just watched him shoot I was fighting depression inside. Then I hear the front door of the house open and out runs their little girl Lilly. She screams "Bwant bwant !!" as runs towards me with a huge smile and a big pretty pink bow in her hair. She runs up and asks to me to help her get into my lap. I helped her up with my arms and tho it hurt really bad I didn't even think of the pain. She's then says let's go for a ride bwant. So we rode around for a bit and then I said ok you drive now. I taught her how the remote stick works and off we went. She was so happy to drive it around and all I could do was smile and laugh with her as we almost "cawashed" a few times. For those few 10 mintues I felt no pain or the emptiness in my stomach. Her smile and laughter made it all go away. It finally felt like myself again even though it was only for few minutes. It's amazing what a child's smile and laughter can do. Then we hear the front door open and little Lilly says "Daddy look I can dwive!". My friend Charles and Julian walk out to the street to join the kids and I. Charles started to shoot the basketball with the boy as I "cwashed" around with little Lilly. Julian speaks to his son and asks him what sport he wanted to play this year. He said I want to play football dad. I said that's awesome I loved playing football. So Julian pulled out a football. I ask his son Luke what position did he want to play but he didn't know. So being that Charles and I both played football we said well let's find out. Charles had him start playing catch to see if he could throw. Then we had him start running routes to see of he could run and catch. I didn't try to throw the ball as I didn't want to see what happened if I did. However just sitting there with Lilly on my lap cheering on her brother and Charles and I giving instructions to Luke how to catch and throw correctly was another time I forgot all about what a crappy day I was having. After a few more plays we ended up saying good bye to the kids and headed back to my house. When we arrived we hung out and watched Monday night football. I ended up falling in and out of sleep at the end of the game. I then hear the chair move and I look up and it's Chalres saying good bye. After he leaves I make it to bed and I was so tired I just plopped into bed with all my clothes on. As I fell back to sleep my mind was at ease. I knew when I woke I would have to face the issues ahead but for now I was done fighting. I am ready to rest for the war ahead as tomorrow the fight continues.