|I am an RA survivor, my journey, my pain, my struggle, my goal|
This is not my typical post, blog or article, yet, it might be my most important to date with a purpose. I am writing this to share with many friends in hopes of just helping a few people. Many people may not even know of my diagnosis? I live with a debilitating disease. I want to use social media as a platform to bring quality content to be of service to others. I don't share this experience to boast or try to say my suffering is more important or worse than anyone else. I know there are individuals who suffer from Cancer, Traumatic Brain injuries or other severe mental or physical disabilities and or addictions.
I apologize in advance for any typos, I am sorry for any grammatical errors. I am just typing and sharing. I am sure I will skip around a bit. This is emotional for me to write as I don't typically share this vulnerable side of myself with others. I just hope it helps someone somewhere?
My story is just one that I hope will bring awareness and educate and empower others to continue to bring attention to what an inoculation can do to an immune system. I will not dazzle you with research, I will not try to sell you on products. I just hope sharing my experience will help someone else out there in this world to use "Motion as your Lotion." I hope I can use common everyday terms to let others know you are not alone. Let me share a short story of my background so I can share where I have come from and where I have been with my journey.
I know this could be a book, but I will try to condense this topic just to assist others on their daily life. Let me share with you were I came from to show you were I have been.
I grew up in North Central Indiana. I was just a boy who enjoyed competing and my favorite sport was what ever season it currently was. I would play football in the fall. I would play basketball in the winter. In my younger years I would play baseball in the spring that turned into Track in the spring. I cant say I was blessed with the most athleticism. but I was far above average. I was blessed with a competitive spirit and edge. I was taught the benefits of work ethic. My dad was my youth coach in Football and Baseball. I started playing football at the age of 8. I almost didn't make the 60 lbs weight limit. I was a small framed young man, skinny with a very high metabolism. I was very active, maybe almost hyper active? If it were today? I would probably be medicated, as I could not set still, even when I was at a desk in school, my leg was constantly shaking under the table eager to get out and run at recess. I was born with asthma. so I wasn't a endurance athlete. in short spurts I was like shot out of a gun. I remember being the second fastest kid in my elementary school in 4th grade, I was the fastest kid in school as a 5th grader. I was the starting quarterback in youth football. my helmet was filled with stars for touchdowns, most yards gained, MVP of the week. ect ect. put the ball in my hands and I would just outsprint the defense. In basketball which was my passion. In elementary I was the leading scorer on the team and I liked the physicality of the sport and again I used my speed and quickness. In baseball I also excelled. I would pitch no hitters. I was the home run king of the league. I would steal the most bases. I would have the highest batting average in the league. I was named an All Star at every age level. I continued to excel in Jr High in all the sports. I was a multiple sport star. I hated to loose more than I loved to win. High School sports continued. I was the starting quarterback on the Varsity as a freshman. and again my speed would be an asset. I wasn't blessed with a great arm, but I could make a pass in the air at 60+ yards. My Basketball was still my passion. Come on, I am from Indiana. I grew up with Bobby Knight as the coach of IU and watching his show every Saturday morning. he was a god in my home. It is where Hoosiers was filmed and in my time, there was no classification basketball. This was a great atmosphere. The term was Hoosier hysteria. I was constantly being yelled at by my mom, as I would play nerf hoop in the hallway and in my bedroom. I was Dr J. Jumping and dunking. My mom would yell, "This is not a gymnasium, stop it already!" If I heard it once, I heard it a 1000 times. I grew up watching Larry Bird and Magic Johnson transform the NBA and then watch MJ take the game global. I would play baseball up to my freshman year. but, I was burnt out, the game was to slow for me. I played Babe Ruth and did well. but I felt I needed a release and I loved to sprint and run and jump. I ran track in Jr. High and I was setting records in Long Jump and 100 meters and 200 meters. So, in High School I went to track and pushed myself to be the best I could possible be. I did set High School records in Long Jump and 100 and 200 meters. I think a few of those school records still stand? Not only was I the fastest in Cass Co. I was the fastest in Miami Co. I was one of the fastest runners in the north central region of the state my senior year of high school. I was named to my High School Hall of Fame. I also excepted a scholarship to play in North Carolina. I would play the game I loved, Basketball. I signed at a school where a coach was from Indiana. I had more offers in football and track. but Basketball was my game. I shared that with you to share with you what happened next was life changing, life altering. I was blessed, my hard work had paid off. I was now going to further my education from the game of Basketball. I will admit, it was cool and great for my juvenile ego to get up on Saturday mornings and read about my honors and accolades and accomplishments from a Friday night football game. I could see my picture in the paper after a basketball game. There were radio interviews and magazines. even a TV interview after a big win on the local news. I guess I was a small town celebrity. Sports was my identity. I was a Hall of Fame athlete.
I shared with you that. So, now I could tell you this..
I mentioned I accepted a scholarship to play basketball in North Carolina. I went from the basketball hotbed of Indiana to play in North Carolina. The homes to Duke University, UNC. The Tar heels. This is were MJ played in college for the Carolina blue. I was living a dream. I was playing at the next level. I was doing what many said I couldn't. Famous college coaches like Coach K, Dean Smith a Jim Valvano at NC State now famous for his Jimmy V foundation for cancer. I had to pinch myself. I was now on a quest to prove myself all over again, in the deep south, I was just a Yankee. I was in the smokey mountains tucked away with a view of grandfather mountain. I was not on the flat land of the Midwest and agriculturally rich soil of Indiana. there were mountains, hills, ski resorts. but most important they had basketball. I was now mixed in with a lot of talent from across the country. I was now just an Indiana boy with a ball and a dream. I was enrolled with 17 hours of classes and for the first time in my life I had to study. In High School. I admit now, I did just enough to get by and stay eligible for sports. Now, I was free from rules, I was independent. I had to manage my time. I had to focus and keep a certain GPA to keep my scholarship.
I will not forget this. I was playing, I was able to start during the Cavalier classic. My parents and grandparents came to support me. I was fired up to see them in the stands cheering for me. My Grandmother was so excited her hands were purple from clapping so hard.. I set a school record that night for the number of assist in a single game. This was Mid October of 1986.
again, I was living a dream. I was playing for a coach who believed in me and instilled confidence in me. Life was good.
I remember being called into my coaches office. This was now Late October 1986. to me it was no big deal. I though he was just checking on me, my grades, my classes. my Coach told me I needed to run to a local hospital in Asheville. He handed me a card and told me to take this card and give it to some nurses who would be expecting me? I thought ok, no big deal, let me go get this done and I will rush back and attend practice that night.
My coach told me that I did to get a shot or something ? The state of North Carolina required me to have a shot to accept my scholarship. my records were all in. I learned the state of North Carolina required me to have an extra inoculation that the state of Indian didn't require? I still didn't understand, but I assumed it was some red tape issue? I was just doing what was asked of me. My coach told me I needed it, I wasn't going to question it. I was just doing what I was told to do. I jumped in a van driven by my assistant coach. he took me to the hospital. I remember walking into a cold room. I sat down, my assistant coach was asking for directions. I walked into a cold hallway that was dark. I had a seat at a chair, I handed a card to this nurse, she read the card. she took out a vile from a refrigerator. It looked dark in color, like a purple. she said , "here drink this" I said, "ok" I drank it, I signed some documents. I remember a bad taste in my mouth. I said, "what was that?" she said. "It was a oral polio vaccine." "You needed that for your school." I said, "ok" I didn't think anything about it.
I had no idea, I look back at this now, I wish I would have asked more questions. but again, I was 18. I was a young adult. I was just focused on the next day, the next practice and when was the next game? I would make sure all of my assignments were prepared for the next class. My time was structured. If I wasn't in class, I was at my work study. I worked in the weight room. I would lift weights. If I wasn't there, I was in practice, or at a study table all freshman had to be at study table. If I wasn't there I was watching film. I was getting in extra shots. If I wasn't there I was with tutors to help me with my Biology lab. cool October mornings, turned into cold wet and snowy November mornings, We were deeper into our season. but now something was different. I was starting to feel pain in my body. My shoulders were becoming stiff. I remember playing in a game on the road and thinking to myself why cant I lift my arm above my head? did I sleep wrong? why didn't my adrenaline kick in? why couldn't I get warmed up? why cant I lift my shooting arm above my shoulder? I played through pain. this was typical for an athlete. I remember my senior year in HS, I played in a homecoming football game with a broken ankle and a cast on my leg. I was moved from quarterback to wide receiver and still got two touchdowns with a cast on my foot. but, why couldn't I lift my arm? I remember the long bus ride back. I remember try to sleep that night. I didn't think about the win, or how I played, I was thinking, why wont this pain go away. I could not sleep. I was in a deep dull pain. like a tooth ache. the dull pain didn't go away. a slow throb down deep in the shoulder. I could feel every heart beat down deep in my joint. I didn't say anything to anyone. but I was starting to get concerned. the next week, not only was it my shoulder, it was now also swelling in my right knee. My knee was red, hot to the touch, swollen. but I continued to practice. but, I remember going into the shower after practice and I couldn't bend my knee to get it over the lip to get into the shower? Now it was a shoulder I couldn't lift my arm, and now a knee I couldn't bend to get into the shower after practice. I still didn't say anything to anyone. but the next week now my knuckles were starting to swell, liked a jammed finger on each of my fingers. I could make a fist. all of this was going on with my body? I was in pain, a pain I couldn't rid. I was now having pain daily. walking to class. the morning stiffness was worse. the pain felt like I was in a deep tunnel and I could barely see the light. I was loosing sleep, I couldn't get comfortable. I was experiencing pin I couldn't fight. I still didn't say anything to my coaches, I didn't say anything to my roommate. I was trying to figure this out. I knew it was starting to affect my play on the court. I was in a slump, I was in a state of confusion. I still didn't say anything to my coaches. I was just becoming more alarmed and scared. I couldn't sleep. I was in pain. I couldn't get comfortable. Thanksgiving break was now quickly approaching. My roommate took off to head home. I had another final to take. I was trying to focus on my finals. I was struggling to do so. I remember setting in my chair in a room, I couldn't get comfortable. my legs hurt. my hips were throbbing. I couldn't hold my pen very well to write answers. every joint was feeling like a jammed finger. stiff, swollen, painful. my range of motion was effected. but I got trough it. I still said nothing to my coaches. I still said nothing to my teammates. I took my last final. I waited until may in my dorm left for home. I was invited to go to players homes. I simply said no thanks. I had a plan. I waited until most of the hallway was emptied with players going home. I was one of the last students still on campus. I had my 1977 Pontiac firebird parked close. I moved my car close to the doors so I could sneak out with all of my things from my dorm room. I was able to do this as It was now about 9pm. I would carry arm loads of cloths and clean out my dorm room until it was emptied. I filled the trunk. I had the backseat filled to were I couldn't see out the back windows. I did it. I cleaned out my dorm room. no one knew I was about to go home to get answers. I was nervous. I was scared. I was leaving North Carolina to drive back to Indiana. I didn't know what to say to my family , but I knew I had a nine hour drive to figure it out. It was cold. it was snowy. It was dark and it was after midnight. I was alone with my thoughts. I was alone with my fear. I was alone with my pain. All I could think about was get home. tell my family. get answers. No one in Indiana was expecting me. It was a surprise to me, I was desperate. I drive through the night. I was uncomfortable with my knees, hips and hands all swollen. It was turning daylight. It was now 7 am. I was almost to Indianapolis. I still had an hour and a half to go. I was still trying to figure out what to say to my family. I knew the words would come to me when I arrived. I had to speak from the heart. Finally my 9 hour drive turned into a 12 hour drive due to in climate weather. It was almost 9am. I pulled into the driveway. No one was stirring at home. I parked the car. I limped to the door. the door was locked. I knocked harder on the door. My mom answered the door in her green night gown. She was shocked. She was stunned, she said , What are you doing home?" I simply said, "Mom," as a tear came to my eye. " I need to get to a doctor, " "I am in pain" "I need help" her confusion turned to anger. the first thing she said was , "you are home sick" she then said with a frustrated voice, "are you here for your girlfriend?" she then said, "Did she ask you to come home? " I said "No", "she doesn't even know I am home," no one knows I am home,"" my coaches don't know I am home, my teammates don't know I am home." , I then said, "I am in pain" and then I said, "I cant fight this pain" My mom then said, " What do you mean?" " I have seen you play in pain" my father worked midnight shift at Chrysler, the conversation woke my father he came out into the living room, where I was in tears. My mom now didn't believe me, and now I had to try to explain to my father. all I could do was show them my hands, my knees and say, " I need help"
When they looked at my hands then they knew I was serious, now I just needed to call the family doctor and make an appointment when his offices opened back up. By now, I was dealing with pain, my parents didn't 100% believe me. I had left school. I had left the team, I had left my dream. and my physical health was now in question. my physical limitations were growing daily. I still had not made contact with my Coach.
I will speed up the story. I feel you get the idea. Weeks turned into months. I was out of the game I loved. I was now struggling to dress myself, I was struggling to brush my teeth. I was struggling to squeeze a tube of tooth paste. I was struggling zipping my pants. I was now struggling to walk down the hall. I was becoming bed fast at the age of 19.
My fingers were the size of hotdogs and my knuckles were the size of grapes, red and swollen and tender, like a jammed finger but with no range of motion. My knees were the size of a small melon. I used to be able to tuck my leg and have my heel touch my butt, not now, now I couldn't even bend my knees 30 degrees. I couldn't straighten my arms and my elbows were locked. My arms would not go above my shoulders. it would hurt to take a deep breath as it was in my sternum. even my collarbones ached. My jaws would pop if I yawned, my ankles were the size of grapefruits. my hips were red and tender to the touch. the balls of my feet hurt with every step. like the worse stone bruise you could imagine. My wrist were swollen and turn downward towards the pinkie fingers. I guess you get the idea and image I am trying to share.
Months of doctoring had gone by. Blood test after blood test. Medication after medication. My family doctor was now referring me to a specialist in Indianapolis. He took the therapy to another level. More blood test. more RX. I remember a time I was taking 16 pills a day to try to find something to give me relief. months went by.. I was still in a lot of pain, I was still tender and swollen. the arthritis was now in my sternum, it hurt to take a breath. It was now in my jaw, I struggled to open my mouth. The Arthritis had now attacked every joint in my body. It would take me what seemed like forever to roll out of my bed to try to walk down a short hallway to the bathroom. That to was a struggle. Now a few more months past and now, my mom would have to come in and help me roll over in my waterbed. We had the heater turned all the way up. I was in a waterbed and couldn't turn myself over. My Mom had to run me. I was now in so much pain. I had lost a lot of weight as I could not make my joints move. My elbows were locked and I could not straighten them. My hands were swollen and I now I couldn't squeeze the toothpaste. I now couldn't not button or zip my own pants. I was in the deepest pain. I was now bed ridden and it was now about February of 1987. I do remember one day telling my mom I was in so much pain I wanted to die.....My specialist in Indianapolis now referred me to the worlds best doctors at Rochester Minn. I was now headed in a car to Minnesota. My father took off of work. I had to meet with the best doctors in the industry to try to get answers. My blood work would come back with one result, then another test would come back with another result. one time I was thought to have lupus, then then tried to see if I had Lyme disease? This as I was in North Carolina and it was carried by ticks. then finally my blood had an RA factor. but here is the interesting thing. No one in my family had RA. no one in my family ever had gout? Most people with RA were at that time females? The doctors were asking hundreds of questions, I was asking myself hundreds of questions. My family was just wanting answers, I was just wanting answers. I was 18 years old. I was a HS Hall of Famer as an athlete , now I couldn't even stand up without assistance. after a few days at the Mayo Clinic. They diagnosed me with RA. Rheumatoid Arthritis . the worst of the arthritis diagnosis. this was not Osteoarthritis, from wear and tear. this was the crippling type of arthritis that attacks the lining of the joints. it is crippling, it is debilitating. My disease was so active, many x-rays were taking and my joints were already being effected and decaying away. I was put in splints for my rest , this so my hands would not turn in. my fingers were already deformed. the doctors sat in the room with myself and mom and dad. I remember the doctors next words. They said you need to be prepared. you need to prepare for yourself to be in a wheelchair by the age of 25. I was mad, I was hurt. the doctor left the room after more prognosis and I remember looking over at my family and saying the following, "They don't know me very well do they?"
This was me being stubborn, this was me being hard headed. It was a self determination to have some sort of quality of life. I would not allow this disease to run my life. I was already out of the game I loved, I was coming to the realization I would never play again. now by this time. I was already enrolled at a college in Indiana. I was given grants to be a basketball coach and a track coach. but the idea of playing and running still were with me. My college roommate at the time would have to bring me my dinner sometime. as I couldn't walk across campus. I would live and struggle between doctors appointments back to Indianapolis. I was trying to maintain my grades. I would have to enroll in summer classes at another local university to take courses to try to graduate. I was have multiple usuries. first to remove the synovial lining in my knees. The thinking was it was a major joint and if we could remove that, maybe we could find a medication to help my other joints. First the right knee, then the left knee 5 months later. I was still taking about 16 medications a day to try to find relief. some for the side effects of the other medications. I wasn't hungry. heck, I was full from all the pills. I was having injections as I had large baker cyst in the back of my knees. I had one baker cyst so large that the cyst left the knee and went down into my calf muscle. The doctors couldn't believe the images. I was with the orthopedic surgeons of the Indianapolis Colts. the NFL football team. My specialist and I had confidence in them. I was now several surgeries into my therapy. My mom watched them drain a nasty yellow arthritic fluid from my knees to try to give me relief and range of motion. I used to have a phobia of needles, now I loved them as they just made me feel better, cortisone shot after cortisone shot. a list of medications to assist my auto immune disease. Tolectin, Feldine, Indocin SR, Naprosyn, non of these even touched it. We went to Plaquenil, to Prednisone to Methotrexate. was not even approved yet from the FDA. It was an experimental drug used for cancer patients. oral form, injection form, These were extremely expensive drugs at the time. Thank goodness I was on my fathers health insurance until I was 25 or married. This was a long and painful time.
I do remember when I played in college I was a cut, athletic 180 lbs. I had about 4% body fat. I was ripped.
I also remember weighing in at one of my doctors appointments when I was very ill. at 113 lbs. I had lost over 60 lbs of muscle mass and weight. I was very skinny and the only weight was my swollen joints.
Did I mentioned I was now broke up with my high school girlfriend? I was a mess physically and emotionally. I thought we were in it for the long run. now, this is not the case, but I felt I wasn't the HS star anymore and she didn't want to be with me anymore. I was now a physical mess and I felt now, I wasn't good enough for her. She would move on and break my heart.
a few years had now passed and I was still in college, I was still taking as many classes as I could with the goal of graduating. My mom unknown to me had contacted my college coach and wrote him a letter explaining what I was going through. I had not spoken to my coach. but, My mother felt he should know. My Coach Randy Unger knew I wanted to be a coach one day after my playing career was over. He and I had that conversation when I played for him. I got a letter from him and I got emotional. he was offering me a coaching position on his staff until I completed my undergraduate degree. He was no longer in North Carolina. he was now at a four year school in Tennessee. I jumped at the opportunity. but I still needed to take care of my grades were I was at and take more classes in the summer at IU K in Kokomo Indiana. but in the fall of 1988 I would transfer to Bristol Tn. I just had to get myself to a point were I could be self reliant. I had the determination. I had the stubbornness. but did I have the physical ability? well, now I had to have all four of my wisdom teeth removed. I had the surgery and the next day I loaded up a car and drove myself down to Bristol Tn. Jaws swollen, but that was nothing new as my entire body was swollen and tender. I still had splints on my wrist. I was two major knee surgeries in and I would take my basketball knowledge and now coach players who were as old as me and older.
I would reunite with my college coach whom I played for and who believed in me. That was all I needed. My father was my first role model. My high school quarterbacks coach was the next. but to me this man was the best. He simply said to me. come with me get your undergraduate degree and lets see what will happen?
I was still on several medications. and then, another surgery, my appendix was about to rupture. I again was rushed to a near by hospital, but now I was a veteran. I said get it out, lets go. I was under the knife again. I came to and my mom and my then girlfriend was at my bedside. Yes, I mentioned another girl friend, she was cool. wow, she liked me for me, not the HS star. I felt she liked me for who I was...
I would finish my undergraduate degree. I now held a B.A. in Psychology. I also had two years of college coaching under my belt. I was able to recruit, I was able to give on court instruction. I was able to do scouting reports. I could provide positive encouragement. I would provide input to my head coach. I still struggled with my physical health, but I was learning to adapt. I would compensate. I was still on heavy medications. I was required to take monthly labs to make sure the medications were not damaging my liver. the results were also sent to my specialist, We had to watch for harmful toxins in my blood stream. My specialist and I had a great relationship. He too knew my aspirations. He listened closely to me as he knew I knew my body and what was going on with my body. Dr Harry S. Staley would access me, exam me, and take what I would share with him and we would make adjustments to find a therapy that would allow me to function.
I was still fighting to prove doctors wrong, I would not allow RA to run my life and I would not accept being in a wheelchair. I wanted a quality of life. I wanted to give back to the game that was good for me, I wanted to use my story and testimony to inspire others not to take good health for granted. Everyday people wake up and take good health for granted, they don't appreciate health challenges. I was continuing my own research by talking with other doctors. I was finding nutrition was also important. I was watching closely what I was putting in my body. I found I was far more comfortable when I controlled my weight and keep my weight slim. If I put on five pounds. I could feel it. I hurt more, especially in minter and damp months. I was a walking barometer. I knew 36 hours before a storm would come in. I was the cliche'. but, yes, I could feel the pressure in my joints. I was keeping a more positive outlook. I didn't focus on the pain, I was focused on the positive I could and would accomplish on the day. If you dwell on the pain, the pain will take over.
Yes, I still had flair ups, I had pain, I had morning stiffness. and Yes, I would feel physically drained when I would have a flair up. but, I would strive to stay positive. I am not perfect, I am still a work in progress. but, I would look forward and ahead. I would accept I had a disease but I didn't allow it to control me and my mindset. If I was having a bad day. I would ask for help to open something. but I would always try to do it myself first. I wanted to be independent and self reliant.
I was dependent on my medication. if I would miss a day. I could feel the difference. I was finding I would never be in remission. but it could be controlled. I continued to be doctored by my specialist. no matter where I was in the country. I was trying to start a career as a college basketball coach. I was fortunate to still be on my fathers health insurance. I was still doing physical therapy. I would do occupational therapy. I was still trying to find the right medications to work for me. I also stayed open minded to try anything and everything. I remember my grandmother read an article on how taping coins to my ankles would help. so, yes, I tries that two. I needed a 1970 nickel and two copper pennies from the 1960's . My grandmother read that the copper content in the pennies and the nickel in the nickel would be absorbed in my bloodstream. heck, why not, I tried that also. I taped those coins to my ankles on each foot, put on my socks and went about my business. I was drinking aloe, if anyone read something and it worked for someone, I was trying all remedies. Laugh if you want, but when you hurt so bad and you can move, call it desperate, but to move and function you will try anything.
I would try paraffin baths. I would soak my hands down deep in a bowl of hot wax to assist with circulation. I tried it all.
as I mentioned I worked on my nutrition. I found for me I would stay away from potatoes and any nightshades. I would try to think to my self, if it grew underground and it was raw, I would not eat it. I forced myself to be active. instead of elevators, I would walk stairs. If I was in a parking lot. I would park further away from the door just to make myself walk more and further. again. "Motion was my lotion" I was a sun flower. whenever I get outdoors and get in the sun. I did it. Was it the vitamin D ? or was it the sun just felt good to my joints? I didn't know, I just knew it felt good. I was at times a glutton. I would come in with a sunburn. I know, I know, skin cancer but in the short term the sun just felt good to me. so I would do it. I would do things I enjoyed. I enjoyed fishing, it was relaxing. I would focus on the presentation of the lure and not on the pain in my hands and wrist. anything to trick myself into feeling better. I was graduated from college. I was now in the workforce as a college basketball coach. I wasn't making much money but I was doing what I loved. I was now focused on practices for the players and how to develop them as players. I had something to focus on. I was excited for the next practice, I was excited for the next game. I was developing players. I was building teams. I was growing in my industry. I was climbing the ladder. yes, I was still doing lab work every month to watch the toxins in my body. I was doing liver cultures making sure the medication wasn't causing damage to my organs. I was doing everything I was told from my specialist. I didn't allow others to set my limitations. I didn't allow fear or the what if run my life. I was living day to day. I was trying to get physically stronger. I was careful not to shake hands if my hands hurt. I would give the fist bump. I didn't tell people of my disease. I didn't want people to feel sorry for me. yes, I was skinny, yes, I was very thin. but it was what worked for me. on good days. I would do more, on flair up, I would do less. Pain was my guide. I listened to my body. yes, I was over doing often. but I was so excited to be able to move. I also had in the back of my mind I was on prednisone. it provided me with a false feeling of good. I didn't want to do irreversible damage to a joint. yes, I had a limp, I called it my strut. I would laugh at myself and not take myself so serious. if someone had a skinny joke. I would laugh with them. matter of fact, I would beat them to the punch. I would make jokes about myself before they could make a joke. I was also starting to notice the hair loss. the hair on my legs was gone. I had patches of hair in some spots. I had no hair in others. I was also starting to grow hair on my shoulders and back. this was also funny. sure I had a complex for awhile. I was loosing hair where I wanted it. I was growing hair were I didn't want it. but hey. I could walk...who cares it was only hair.
Yes, I went from a Hall of Fame athlete as a player to being bed ridden for about 9 months. I went from a star athlete to a 115 pound torture chamber of pain. I went from surgery to surgery. I had machines hooked up to my joints to keep me moving. because I could move my joints myself. I was in hospital bed to hospital bed. after one surgery. I remember my family getting a bed for me in the living room. I had a machine hooked up to my leg to move my leg for me and from time to time we would make the machine further the range of motion. I went from HS to Indiana. To College in North Carolina. I then went to Tennessee to graduate from college then that took me to Louisiana. again each step on my career was an opportunity to continue to grow as a professional. I was taking on more adult responsibilities. cost of medical care. car payments, car insurance. rent and electricity. but medical cost for medications were getting crazy, especially since aspirin didn't work for me. I share this with you as I wasn't immune to the cost. I was in a struggle like everyone else.
Louisiana turned into an opportunity to return to North Carolina. That turned into an opportunity to live and coach in Hawaii. The miles stone with this job was I was now 25 going on 26. I wasn't in a wheelchair like the doctors told me to prepare myself for. To me this was a win. don't tell me I cant do something, because I would prove you wrong. as a matter of fact, go ahead, tell me I couldn't do something. you are now my motivation. I was driven. I was practicing what I preached. I was driven to be the best at whatever I set my mind to. if I was a coach, I wanted to be the best coach. If I was teaching on the court. I wanted to be the best teacher and make sure everyone knew and understood the roles and responsibilities. if I was recruiting, I wanted to build those relationships and be the best recruiter in the country. I didn't listen to negative. I would drown out toxic noise. if you didn't share my vision. I didn't have time for you. to me this was just words, just white noise. I would find success in small accomplishments and I was grateful and filled with gratitude.
My career was what it was. I was in Hawaii for two years. I was on the volcanic soil. the average temperature was around 77 degrees F. We were on ESPN for the Maui Invitational. I was able to meet and rub elbows with some of the top coaches in the nation. Bobby Knight from Indiana University. Rick Pitino from Kentucky. Lute Olsen with Arizona. John McCloud with Notre Dame. I was living a dream. the level of talent I was coaching was better. the level of play was better. I was building life long relationships. I was proving doctors wrong. I was not in a wheelchair. I was helping players graduate. I was building players to further them in their careers. I was a student of the game. I was a teacher of the game. I was able to jog on Waikiki beach. I bought a bike instead of a car. I biked everywhere. I biked from my apartment to my office. I biked to the grocery store. I biked to swim on the beach. I hope you see what was going on. I was forcing myself to be active. this was giving me cardio workouts, this was triggering my endorphins. This was just making me feel better, plus I was in the sun. I was eating a lot of fruits and vegetables. I was drinking water and juices. Yes, My face was round and swollen from the prednisone. I had a moon face. I was a skinny man with a moon face and I didn't care.
I was emotional, the prednisone gave me mood swings. I could be happy one moment and in tears in seconds. but again, I didn't allow that to run my life. I would sleep and have hot flashes. I had typical side effects. My eyes were light sensitive. I needed glasses now as I had become more near sighted. My hair was falling out. the once think head of hair I had was thinning on top. My specialist said it was time to go to methotrexate. This was the experimental drug. the FDA had not approved it as a RA drug yet, but in labs they found it was working on test animals. I now was a test animal. I too had to sign documents saying I knew the dangers of the drug. I would take it orally. I could only take it one day a week. It was strong and different people were effected differently. I started taking this drug with prednisone and plaquinil. I was not a drinker. I had never been drunk in my life. I didn't know what it felt like to be drunk or hung over. I had never drank a beer in my life. but the day I would take this medication. the next day I was dry eyed, dry mouth. I felt like everything was in slow motion. I would try to sleep it off. but I would require a lot of sleep until the headaches it caused to subside. I was lethargic. I was dizzy. but again I was looking for the positive. I felt I was ok to sacrifice one bad day for 6 good days physically. this was far better than the alternative. I was not in a wheelchair. I was also looking for the silver lining. but wow ! this was an expensive medication. back in the 1990's this medication was about $660 / month. This was a house payment. and a guy who was just a start up college coach. this took everything I had. but, I had to do it to not loose my physical functions. so for years I did it. well as any college coach can tell you, you go where the opportunity opens. I was headed to Florida.
I was going back to the mainland. I remember waiting for weeks for my things to be shipped back to the mainland. I had verbally accepted a job at mid season with a successful junior college program. I had built a relationship with a very successful coach and program. as a matter of fact they were ranked #2 in the national, they were well coached and had great talent. This Coach was a great guy. He was a successful business man in the restaurant business. he had worked and coached with dale Brown of LSU. the guy who coached Shaq. he had a great personality and he and I clicked. other then my college coach and Coach Bob Burke in North Carolina. Bob Burke was at the time the second winningest coach in North Carolina behind Dean Smith, this before the rise of Mike K of Duke. this was again a great opportunity to learn and grown as a person and professional. Coach Bob Stinnett was smart. he was business savvy, Bob was the king of one liners. You would not know he was a very successful businessman. but he did have great pin stripped suits. and he did drive a Mercedes with a drop top. and he was a future Florida Junior College Hall of Famer. and I had the opportunity to learn from him and with him. Bob gave me responsibility, there were times when he was busy with his restaurant. and I would teach on the floor, go over scouting reports. I would live in the dorm with these guys. I would build solid relationships with them. I was with them around the clock. I would hang out and watch games on TV with them. I would help them with the tutoring. and yes, when they got in trouble I was the big brother coming to bail them out. did I mention we were #2 in the nation? We were breaking state records, we were breaking school records. we were beating teams by 50 pts. We had great talent. We had players being recruited by the top 4 year schools. We had player of the year candidates. I was no longer on the islands in Hawaii. I was on the Florida panhandle around the peanut farms and deep in the accents of the south. the yall's and over yonder. We had players from Alabama, Mississippi, Florida. these were the top players from those states and South Carolina. These were the top players in the south east. I was learning another region of the nation. I did have a car, as I just moved from Hawaii. I had a bike remember. my grandfather allowed me to drive his pick up truck. I was a pick up truck driving, skinny ,limping coach who was starting to talk like southerners. I was single. I was growing with my players.
I didn't have time for personal relationships. heck, I was still learning to take care of myself. I was learning to provide for myself. I was an emotional guy. I knew me. I was all about loyalty. once I put my heart into something. I was fully committed. I knew my heart couldn't take being hurt or broken. I was dealing with enough to take care of me and I didn't want to be a burden on anyone. I knew me, I knew what I was capable of. If I couldn't give my heart. it wasn't fair to a gal who was putting more into it than I could give. Yes, I had friends. I had fun. but I was always up front and honest. I wasn't looking for a personal relationship. in the back of my mind, I didn't want anyone to have to take care of me if the doctors were right. the song by New Edition would be my song. "Can you stand the Rain?"
This song to me was how I felt. My ballad, On a perfect day, it would be easy, but when the storms of a physical disability would hit, could you handle my condition and disease?
I just wanted to function, I just wanted to have quality of life and help others reach their dreams and aspirations through sport, as the game, I felt was taken from me. I tell my athletes play everyday like it is your last, because you never know when it can end? I meant that. I was a walking testimony to it. I would share that with conviction and from my heart. I guess it was an easy sale.
I continued to push and pursue my career. It is crazy sometimes how life and people with outside agenda's can also affect a livelihood. I went from the college game to the Minor league pro game. I was a coach with a minor league team located not far from the Chipola. I was brought in as an assistant coach. but after a few setbacks and an ownership group that was not stable. The small market we were in was not happy with the style of the then head coach and GM of the franchise. A small group of local owners approached me and asked me to be the head coach, as the previous head coach was not a marketable fit for them in this region. He was a yeller and screamer and would frequently use a vocabulary that was suitable for bible belt. I was younger, energetic, enthusiastic and positive with my approach. they said that if I didn't take over, the team would never have a chance to work. I was conflicted. but I then not only needed a job, but I felt responsible for the young players I was coaching. I was now one of the youngest head coaches in the United States. It was a challenge. It was a huge risk, but one I felt I must try to help a small community who backed and supported us. I would set up speaking engagements at local schools. I would make appearances with players to help the less fortunate have a holiday. It was very moving for me. It meant a lot to me to have the opportunity to give back. That didn't last. as the league would fold. a common thing in minor league sports. but this lead me to be able to network with agents and I had an agent send me overseas to coach a FIBA club.
I was now a professional head coach of a pro team in Europe, I was sent to the small country of Luxembourg. This is a small country bordered by Germany, France and Belgium. they have their own language of Luxemburgish. only 350,000 people live in the small country. I took over a basketball team and we had the winningest record in club history. I had a great experience with these young players and brought over the prefect American to fit the teams needs. we went to the Final Four in the cup. this was the first time in club history. we had the most wins in a single season for the club at the time. but I also learned many things being outside of the country of the USA. I was able to find my RX for my RA for far less the price. Methotrexate would cost nearly $700 in the USA. I could get the same RX in France for $66. I am sure the US government doesn't want me to share that. I am also sure the FDA will not be happy for me to share that info. but it was simple the truth. How can a rich country like the USA get by with charging so much for RX? it is all about the money. it is all about the bureaucracy. it is about greed. it is about exploiting the individual. I am sure if this info gets in the wrong hands I could get in trouble? I am sure someone would put me under a microscope and make my life heck.....well I guess 100% transparency is not popular. I also remember being on Gold. Ridaura was like swallowing gold. It was so expensive. It was over $1000 why could I get this same RX for less than $100 in Europe. I could get it in Germany. of I would have a lay over flying back to the USA in France and I would get multiple months supplies to help me with the cost of the medication. Just being honest here. but while on the medications my swelling was down and I was able to function daily much easier.
I would coach in Europe at Luxemburg, Sweden and Austria and Germany with great success. I didn't allow my RA to control me, I was blessed to maintain my doctoring with my specialist. I was able to take my lab work and send results back to my doctor and I could get prescriptions written for me to continue my treatment.
I simple refused to live in fear, I refused to live with uncertainty. I would have contract negotiations with the GMs of the teams and if I felt it was a fit. I would do it. I didn't second guess myself or allow my disease to stop me. I would always find away to get the medication I needed.
These winning teams always opened up other doors for me as a coach. I found myself in the middle east. I signed a 6 month contract to coach a team in the Kingdom of Saudi Arabia. yep, I was in the Kingdom of Saudi Arabia. well, we again had the winningest record there as well. We were undefeated and had first ever wins for the kingdom outside of the country. I was able to be introduced to the Price who was the secretary of sport in the country, I was also able to meet King Abdul Aziz. but I didn't not want to extend my contract. I wanted to look at other opportunities as this was a tough culture for an American to live in. I was not able to speak with women or children in this country. I was not living in a compound. I lived with the Saudi people, I actually lived across the street from the Bin Laden compound. We all know this family name correct. That is a whole other story. I was also told the main financial support was the leading manufacture of military warheads? this could be a book in itself. I understand. I was exposed to the muslin religion and the multiple prayer calls daily and how everything stop during prayer time. even if we were in the middle of the game. the game would stop and everyone would kneel on the rugs pointed towards Mecca and pray to Ala. I would simply go into the locker room and wait for the players to come get me. Also the fasting with the religion. the Hajj and the Ramadan periods. the players would fast from sun up to sun down, try to hold a hard practice when the players were not eating. We change and we adapted. I had great respect for their religious convictions. but I shared that with you, as my monthly medications were flown to me every month from Washington DC. Saudi Airlines had a direct flight from Washington DC to Jeddah, Saudi Arabia. My Team GM was well connected and he arranged for a person to get my medication and put it on a flight for me. now, remember I told you I didn't sign a contract extension? well, when I didn't sign an extension, they would not fly my medication over to me. I also did not have my passport in my hand. the club would hold your passports and keep them in a safe. I was stuck in a country with no passport. and no medication. I was starting to get worried , so I made a visit to the US embassy to get help. they laughed and said, it is a good thing you were having success....it was no time for jokes to me. This was my first and only scare with my medications. This is a true story and it taught me to never surrender my passport again in any country, for any reason.
but that success led me to the country of Lebanon the next season.
Lebanon was by far one of my favorite countries to work in. the city of Beirut was not anything like you see on CNN. the country along the Mediterranean sea is a pearl. Yes it is war torn but it infrastructure has been rebuilt. The fans of basketball are awesome. they play a very high level of basketball and in my first season there. I replaced a Yugoslavian coach mid season. We took them to the finals and won it all. Let me explain it like this. The Prime Minister was a supporter of our club and he was Muslim. The team we played in the finals was the president of the country and he was Christian. when you mix, sports , religion and politics. it is a cocktail for emotion and my Riyadi club won the finals for the first time in seven years. But it of course was controversial. games were suspended, courts were lined with men wearing green berets and carried machine guns. you could cut the tension in the air with a knife. I think you get the idea. I also suffered a ACL tear while coaching this team. my foot caught on a players foot. I body twisted and my leg didn't and I felt a pop. like a gun going off. my knee swell end like a watermelon as soon as it happened. I did the surgery there in the country and I went under the knife with a local doctor who studied in the USA. he did an incredible job. I had the surgery. I coached in a game a couple days later. I was told to leave the and stay in a wheelchair. NO FREAKIN WAY ! not the wheelchair again, I went to the game, and had a leg brace on. I had my crutches and put them down and I hopped on one leg the entire game. but I refused to be in a wheelchair. I was sweating out the Anastasia during the game. I had a collision during the game with one of my players who caught me. I was so exhausted after the game, and went home and all the emotions caught me. I got to couch in my hotel room and broke down with tears as I was so glad the game was over. I was leading by example. if I could jump around and coach a game after a major surgery and jump on one leg. they as players could give even more effort. I did it because that is my personality, but I also would never go to a game in a wheelchair. NEVER. Was I stupid? probably..was it mistake? probably...would I di it again today? yes...I could play in pain in High school. I could coach with pain as a leader...it is who I am. again, I didn't want people to feel sorry for me..I just wanted to do my job to the best of my ability.the ACL was was made from hamstring and a screw was put in my leg to hold it in place. I can still feel the crew in my leg today. The doctor also had to repair a MCL as it had what was called a bucket tear in it The doctor sowed it up and made me a new ACL. Now I would do rehab there while I was coaching the team. I was on crutches for weeks. And the next season while on the court in yet another country. I was rebounding for a player and went to throw a pass to him. I twisted and pop. The MCL would tear again. This time I wait for the surgery. I could walk, but at times the knee would lock on me. it would happen multiple times. I would feel a shooting pain, but again I waited a long time to go under the knife, I tore the MCL while in Doha Qatar. yes, I would have the surgery. it was a must. but this time I made the choice to just remove the MCL and not try to sew it. now the MCL was gone.
Lets add the knee surgeries up. 1) total synovial lining removal Rt knee. 2) total synovial lining removed Lt knee. 3) Now a major surgery a reconstructed ACL and MCL repair. 4) now MCL removal in Rt knee. Questions in the back of my mind are was the RA a culprit to the knee issues? I would make an educated guess and say Yes ! How could it not? but I had a job to do. in this time line of my life. I would meet and fall in love with the girl of my dreams, a girl I would compare as the female version of me. Kim was and is outgoing, positive, a strong single mother to a wonderful daughter. she was fit, she was all about health and fitness as I was , we enjoyed working out. Here is a neat story. I was introduced to this wonderful gal as she was the sister to a wife of one of the players I just coached and won a championship with in Lebanon. I was once told about her while at a Team camp I was holding for the players. I was setting by the pool talking to Holly. she said you need to meet my sister but she lived out in Salt Lake City in Utah. yes, that's right. I was in Lebanon. in the Middle East. We were talking about a girl in Utah. when the heck would I go out to Utah? highly unlikely correct. well here is another story. every summer, I would attend the NBA summer league in Vegas to network and grow as a coach and watch players who I could sign as players for my teams. I would spend a couple weeks in Vegas. then I would go up for about a week to the Rocky Mountain Revue in all places but Salt Lake City. Here is the story of our meeting. I would call Paul and let him know I was coming out to SLC. He said perfect. Paul wanted to workout to get I shape for the National team as he played for Lebanon and he would soon be guarding Yao Ming of Team China and he wanted to be in great shape. We agreed to meet up and workout when I would arrive to SLC. I called and spoke to Holly and Holly wanted me to meet her sister. Holly said, "just stay with my sister you would love her," she then said, "you guys have so much in common" I said I would not stay with someone I didn't know. but I asked for her phone number to call and introduce myself. I did call and we did speak on a couple occasions. I had never seen her, I had never seen a picture of her, but Holly was right. I loved her energy, I loved her positivity. I loved she was a mother to a young daughter. I didn't have any kids of my own. but I loved kids, as I loved being an uncle and spoiling my sisters children. Kristi, Colton, Kensi, Kassi and my name sake Conner Scott were my nieces and nephews. I loved them and wanted kids of my own. but I was not in a serious relationship to have children. I also had the fear in the back of mt mind, that kids for me might be out of the question as the medication I had taken for years might cause birth defects? That thought was always in the back of my mind. but anyway. Kim had a daughter named Whittney. yes, names after the signer Whitney Houston. I was looking forward to my visit in SLC. I had it set up that Paul would get me at the airport when I would arrive. but I also called Kim to let her know I was coming in. but what I didn't know is Kim called me and left a message for me. I wanted to see this gal. but I also wanted to punk her abit. I wanted to see her before she would see me. I told her I was a tall guy with a New York Jets cap on and I had plaid shorts on. So, in my mind, I was like, I will keep an eye on this guy and see who comes up to her to say hello to him, and then, I could walk up to her and say hello and introduce myself. I will admit, it was a funny plan, the guy wearing the Jets cap was not an attractive guy at all. but that was the comedy of it....I was going down the escalator to the baggage claim. I kept my eye on the guy with the Jets hat. then all of a sudden. I was picked up and grabbed by my guy Paul all 6'10" of him, he bear hugged me and put me on his shoulders like a sack of clothes. we did a bromance hugs and shared greetings. I wanted Paul to put me down as I was just in a car accident back in Lebanon before I left for the USA. I had a cracked rib from that car accident. Paul put me down. I felt a tap on my shoulder. I assumed it was his wife Holly. I turned around to give who I thought would be Holly. and I put my face right in the chest of a gal I didn't know. My face was right in her breast. Oh My goodness. She was tall , tanned, had on a green mini skirt with a low cut white blouse. Kim's high heels made her taller and yes my face was in her chest. I was now a shade of red I am sure. She said, "Hi, I am Kim" We hugged and I did a take and yet a double take. She was stunning, she had beautiful green eyes, a radiant smile. She was a toned , her legs in that mini skirt and high heels were amazing. She was a former bikini model for a company called EAS , she did a body for life shoot a few years prior. the image of her was itched in my mind. I looked back over to Paul and said, "She is beautiful" it was crazy to me I just spent two weeks in Vegas and I came to salt Lake City and I hit the Jackpot. We had agreed we would go to an Italian restaurant. I was ready for some pasta. this after a few weeks of subway in Vegas. I sat in her Mercedes X5 and I told her, "I know you must hear this all of the time, but you have not heard it from you, You are beautiful" my heart was racing with excitement. I was so attracted to her. I loved her energy on the phone. I was more than physically attracted to her at first sight. I was eager to spend my time and get to know her better. I was ready for the NBA summer league to continue, I was eager to get to know Kim. Kim said something to me I too would never forget. as we walked out of the airport. Kim asked me, "Are you hungry ? " I said , Yes" she then said, "you need a sandwich" "we better make it a foot long" this because I was so skinny. she was accustomed to dating gym meat heads and all bulked up. Funny right? I was this tall, thin, tanned from my Vegas trip. I wanted to punk her as see who walked up to a man in a Jets hat. instead she tells me, I need a foot long sandwich. She got me. I had made a promise to my nephew that when I came back to Indiana I would take him fishing. he was my name sake. My sister would tell me he was just like me. I would have a fishing trip coming up, but, I just wanted to get to know this girl Kim. I would spend almost a week with her. We would stay up until 6am or 4 am talking and getting to know each other. We had our first night at a great Italian dinner. The next day she would have her dad's chicken enchiladas and we would take them to a park for a picnic. I loved everything about this girl. On Wednesday. the NBA summer league would have a day off. Kim and I would drive up to Park City together. We would sign songs to each other and yes. I played "Can you stand the rain?". We liked the same type of music. She was a female version of me with her energy. We did share a lot in common. I liked her a lot. but I had no idea what she thought of me? I few days later I would find out. I was flying home and in my bag, she gave me a EAS t shirt the company she did work with. she also put a CD in my bag with a sweet hand written letter. I was at the airport to fly home to take my nephew fishing. and I called Holly to thank her for the introduction. the first thing she said to me when I called was, "what did you do to my sister" "Oh my gosh, she is in love with you." It was music to my ears. I had to go to California for another camp after a short stop in Indiana. but this was the first trip I would tell my family or share with my family I had met someone. I think everyone was shocked. My nieces and nephews were stunned as all they ever heard from em was I would be single for the rest of my life. but now I was talking about this girl form Salt Lake City. I went to California to stay with a former player of mine and I scheduled a stop in Salt Lake City to spend more time with Kim. We got together again , and it happened. I received a contract for another team in Lebanon. I only got to be with Kim a few days. I was about to leave for Lebanon again and get this. We would sign Paul to my new team. All I knew I felt I met my wife. We would spend time getting to know each other better via e mails and she would send me the sweetest care packages. We would call from time to time with pre paid phone cards. but e mails everyday. I knew in my heart. I met my future wife. I continued to treat my RA. I was open and honest with Kim about my disease.. she would buy books and read up on living with someone with RA. How sweet was this. she was educating herself on my disease. I found that attractive. Just another amazing quality. I was jogging two miles a day. I would lift weights lightly to tone with my Team. My disease was under control. the dry heat of Vegas and Salt Lake City was beneficial for my RA. Salt Lake was considered high dessert country. but those two weeks in Vegas every year was always when I did my best with my health. Dry Heat was always better then wet cool precipitation. even humidity of the mid west and Florida hurt me. I was learning geographical regions were I did better health wise.
the story continues to get better. I was with my new Team we were 8 and 0, we had not lost a game and we were winning every game by an average of 30 pts / game. but I had a player who was not happy. He was a 35 year old. he was at the end of his career. he had been banned for an illegal substance a few years prior. He was a former Icon. He was a legend but he was not realistic to his descending career. We also had the top Lebanese player in the league on this team. I had been back in Lebanon since August. It was now Mid December. I was being forced by the team management to utilize this player. I shared with the management what would happen. I didn't agree with it. We were undefeated. I walked away from the team and resigned, again we had not lost a league game. I tried to once again to meet with the management. I tried to meet with the player. he refused to talk with me. I felt the management would back the player who was in the wrong at this time. and I walked away. I left the team. I had resigned. I will say this again. we had not lost a game and we were winning by an average of 35 pts a game. I had already won a championship in this league and I took another team from last in the standing to in the final four. We were a proven winner in this league. I too was very successful as a coach. We had accumulated a near 800 win percentage as a Head Coach with FIBA teams. I left Lebanon, I flew to Utah and I started my life journey with Kim. We would get engaged the next October and I would leave for China to coach this after another minor league team folded. I was the Head Coach of a CBA team in Salt Lake. it folded and my friend with the Dallas Mav's sent me to coach in China. It was so cold in China. I was near the Siberian boulder. It was above freezing only two days my entire time in China. Kim and I would play a beach wedding on the Virgin Islands. It was small wedding. Whittney and her friend and Sharon our roommate was standing with their toes in the sand as we exchanged nuptials and vowels to each other. I found a ring for her from her Nana. I bought that ring. I booked the flights. We booked the cruise to the Virgin Islands. We wanted the Turks and Caicos, but they had a rule we had to be on the island for 48 hours. we didn't have that much time. so we said St Thomas it is. Emerald beach it was. May 8th was our wedding date. Dresses were bought a reception was scheduled back in Salt Lake at Willow Creek country club. I was now with the women of my dreams. Our journey would continue.......
I would continue trying to take care of myself. my battle now was my RA specialist would be retiring back in Indianapolis, Indiana. I would fly back to see him and continue my doctoring with him. Dr Staley had seen me at my worst, he had seen my work at finding a therapy that would start to control my symptoms. I was scared and nervous of his retirement. but I knew we would have to try to find another specialist. I would ask him to research and see whet we could find. I was now invited by NBA coach and soon to be Hall of Fame legend Jerry Sloan with the Utah Jazz. I was able to utilize the Utah Jazz doctors. He would help me with my medications and labs in the transition. I was continuing to grow as a coach. everyday was a classroom for me. I was watching and observing with the Utah Jazz staff daily. I did this everyday I was in town between my head coaching steps back over in China. I would also help my close friend Keith Smart who was then an assistant coach with Golden St. So, NBA Utah Jazz, NBA Golden St Warriors and my continued FIBA head coaching stints. We continued to have success as a Head Coach with FIBA coached teams. I was in China. the government signed my checks. I had to document every second of every practice and every drill to turn in. It was a communist government. I was learning yet another culture. I had been in Europe, I had been in Latin America. I had been in the Middle East. the experiences were amazing. We were winning. I had a great translator, I called him lingo. he self taught himself English by watch NBA coaching videos. This kid was amazing. This was the country I had been in that I needed a translator 24 hours a day. China had two dialects. Mandarins and Cantonese. I was now in the southern part of China near Hong Kong. The weather was much warmer. I was closer to the coast. it was not quite as smoggy. We went to and won the league. I had to get back for the NBA summer league in Vegas as I was blessed to be with Golden St once again. This time with a rookie named Steph Curry. I am sure you know this name if you follow NBA basketball. and I would have another life changing opportunity. I went back to China one more time to coach the Snow wolves. We again had success. I didn't have the same translator as Lingo had an illness in his family and he wasn't ale to work with me and what a difference it made. My next translator was named #2, as he was my second translator. and he was number two...crap. he wanted to be friends with the players. and may times I would be giving instructions and I could see the confusion on the players faces, but here is the tricky part. How do you go to the team owner and complain and want to fire the translator and the translator has to translate you want him fired...not easy. anyway, Once again it was a great experience. but I was telling Kim my wife that I wanted to get involved with the big brothers program to mentor youth as I didn't have any biological children of my own. I guess it was a void in my life not to have children. Whittney was already out on her own following in her moms footsteps in the beauty industry as a hairstylist. I was introduced to a young man from South Central LA. The Long Beach area I was told. He was always carrying around a basketball while he was on his long board going to school. My friend came to me and said, "hey, you are a basketball guy right?' I said, "Yes" He said ,"this little boy always has a basketball, I need to introduce you to him." The introduction was on. He was a very small little man, skinny like me, I remember him being very quiet. he was very insecure, he didn't make a lot of eye contact. but I do remember him having a great dimple when he smiled. I would see him from time to time and he would come by my office and we would talk basketball and he always liked talking about his LA Lakers and Kobe Bryant. this was his idle. The game of basketball was our bond. I continued to research him and his situation. I learned where he was living. I also remember going home one night and telling my wife I was going to be home late on Wednesday as Brandon had a super league game at a local elementary school gym. I went to the game to watch and support him. I also remember going home that night and tell Kim "There is something special about this young man."
I met his biological mom a few months later into the relationship. We were his sponsor for his freshman year on the basketball team. I was already becoming a mentor for him. To make a long story short. he ended up becoming his legal guardians and he would move in with us. If you have ever seen the movie Blindside, Tim McGraw and Sandra Bullock bringing in a football player. trust me when I tell you there were many similarities, but this was a basketball player and he was only 90 pounds with rocks in his pockets. I would coach his AAU teams at age 15, 16 and 17. I took the role and responsibility very serious. I wanted to be there for him. I wanted to lead and guide him. I was told he didn't have a father figure in his life. I was that guy. I was finally a dad. I did take off to Venezuela to coach a pro team in his sophomore year. I was coaching a team with a team owner who to me was the Mark Cuban of Latin America. I was making great money. We were building a great team with Local talent and I was bringing in former NBA players to compliment the team. We were headed to the playoffs. It was a process and we were building. Things didn't end well for reasons I will not share here. but I went back to Utah to be with my family. and again. I was able to coach my son in AAU basketball. These were great times, we made the tournaments family time. Kim would come and support the team and support Brandon. Brandon went on to be a valuable piece of his high school team. I was now in a position to try to help him find a place to play college basketball on scholarship. he had solid grades. he was a hard worker. I felt he had a great skillset. he had some NCAA division one interest. He was at a visit to a school up in Idaho. I think they felt he was to small. he would graduate high school at the age of 17. he was small and physically he wasn't mature yet. but he did have a solid game. Brandon was a true point guard. We could look at prep schools or junior college options. the next day I had him go to another school. This was junior college. and he was given an offer. I was so proud of him. he was now a student/athlete. I had 13 years of college basketball coaching experience. I had coached at nationally ranked teams prior to my professional coaching and I was try to empower him with the tools and skill sets to be prepared. Brandon was now at Utah State University Eastern. he was an Eagle.
It was now his sophomore season, the team was struggling. there was a sexual assault case. players were kicked off the team. There were discipline issues and more players were kicked off the team. I knew and had a slight relationship with Brandon's coach. he approached me and asked me to help him with the team. I asked Brandon if he was comfortable to coach him in college? he said, yes, you will help the team. We only had seven players left on the team going into the second semester. with only seven players we still had success, prior to my arrival with the team they had lost 7 in a row and loosing by 30 points. I came in and we changed the culture of the team. there were still issues to clean up, but we did it. and we then went onto win 4 in a row. we then beat a top ranked team and took the other top ranked team into OT and lost on a free throw missed by Brandon but great memories were made and wonderful experiences were had. Brandon was graduating with his associates degree and he was singing a full ride scholarship to Adams St University in Alamosa Colorado. I had done my job as a coach, I had done my job as a father. I was thrilled for Brandon. my health took a slight turn. I was not getting enough rest. I was working two jobs and a lot of travel. It was taking its toll on me physically. but I was in it to help Brandon and allow him to live his dreams. I didn't need a resume filler. My only thought was to be there for Brandon and help him and help his teammates.
My RA symptoms were coming back. My immune system was not taking to the medication as well. My body was immune to the drugs that helped me for years. I was working with a new specialist in Salt Lake. We were trying to find a mix that would work and keep me in better control. I was on the Arava. but it was not working. I was then trying Methotrexate again as it worked in the past. but now I was taking it with the Arava and now I was getting ulcers on my eyes, it was very painful. It was toxic to my body. so we experimented for a few months, I was back on prednisone. I was not sleeping well, my heart would race. We went with a biologic, but my insurance would not allow the biologic the specialist wanted to use, my insurance was telling my specialist we had to try another biologic first. so now insurance knew what was best for me not the specialist. That is so frustrating. again, it is about the mighty dollar. not my personal well being and quality of life. It was about pharmaceutical company's getting richer. Again it is frustrating to me, as I was in Europe. I knew cost were not as high. There was no FDA to regulate. to make a long story short. We tried for a year with this biologic Ebrel. It wasn't working without assistance from another medication. but I was starting to have high blood pressure. I was having chest pains. I was light headed and dizzy from time to time. I even passed out one night going to the bathroom to be picked up by my wife on the floor. I was feeling anxious. I guess it was affecting my nervous system. as you know medications affect different people different ways. but this was my symptoms. It was time for a change.
I am now 50 years old. Yes half a hundred. or 25 two times. How ever you want to see it. I have blown the , "You will be in a wheelchair at the age of 25" I am in the process of going on yet another biologic. I am hoping and praying this one will do much better for me, we will see? I write this in hopes of helping others with their journey. I am writing this to share my journey and let others know they are not alone. Coaching was my passion. but maybe my purpose it to coach you on your journey with your RA and arthritis?
I know this was a bit long for a blog post and each of these experiences could be a book in it self. I hope this was entertaining to you, I hope this was educational to you? I hope I have empowered you to achieve more?
This is my journey, This is my Pain, This is my struggle, my Goal is to be of service to you. I wish you luck on your journey. I pray for strength for you to overcome the challenging days.
I can be reached at firstname.lastname@example.org
I will gladly share my time with you to answer any questions you might have. I hope I can be a resource for you ?
It is now 2018 and I have lived and survived this journey since 1986 !
if I can, so can you !
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