JRA since ’88
Do you know how some people complain about how they may be too short, or maybe they wish they were stronger, I just wish I could one day lift my hands over my head. I was at the age of eighteen months old when I was diagnosed with a disease Juvenile Rheumatoid Arthritis or JRA for short. Some people could look down on this situation, but I choose to look up. Instead of looking at this at a curse, I took it as a blessing. JRA made me have my fair share of struggles, pain, and torment, but believe me I fought through it.
How did this all start? This question has been circling my mind for a long time. The easy answer is, “I don’t know,” but I do know what I was like before I had the disease. Swimming was a big part of my life. People used to be amazed that at my age, eighteen months old, I could swim so well. My parents took us traveling a lot. By us I mean me and my two older brothers. The last trip, before I had JRA, was in Cancun, Mexico.
Mother and father were impacted the most. Father is a doctor, he tried his best to take care of me, but he didn’t know what was wrong at first. Doctors thought I had cancer. Waking up each and every day with a fever, a fever as if there were a fire inside me, was the worst. I could not get out of bed, no one could touch me. All mom wanted to do was give me hugs, but she couldn’t because of the pain I had. It may be hard for some to remember what it was like when they were two years old, what they experienced, it may sound cliche but I remember like it was yesterday.
Hospital visits were a norm. It was pretty much an everyday thing. Instead of most kids going to the park to play, I would get a trip to the doctor’s office. Now mind you, this is just my first year living with JRA. As I said before, the doctors did not know what was wrong at first. Sometimes cancer was a diagnosis, sometime scleroderma. Guinea pig is what I thought of myself. They tried every and all sorts of tests on me since I was young, and even until now. The rooms I went for testing reminded me of those horror movies where they do experiments on people. Lights as bright as the sun, and the room so cold I could see my breath. What kind of life was this for a child.
As I got a little bit older, and through the years, I just got used to everything. Medicines shoved down my throat, needles jabbed in me like I was some sort of pin cushion. Not to mention a surgery almost every other month for one problem or the other. I was given pretty much every experimental medication that the doctors knew of. If there was a new med, I was first on the list. I lost hearing in my left ear, due to the JRA. The teachers used to talk to me and I couldn’t hear anything. However, despite everything bad that was going on, I was surrounded by wonderful people.
I went to a special elementary school. Until now I can remember how wonderful it was. The school had an area for kids with special needs. So every morning or after every class, I would go to the swimming area and do therapy. The teachers and students were amazing! So understanding and full of love, I never experienced the word “bully or bullying” throughout my entire educational life, which was a blessing.
Eventually the pain got so bad, walking was not an option anymore. My hips were so bad, they were almost decayed. So, at the age of twelve years old, both my hips were replaced so I could walk again. It was a horrible experience. My parents had to find a specialist who did this kind of thing. The only one that would accept me and do the surgery was a doctor is Los Angeles. The surgery took a total of eight hours. During the surgery, there was almost and out of body experience. The feeling of floating away from my body and looking down at the surgery, was as real as looking at this computer screen. I could see everything. The surgeons, tools, the lighting, and even the metal hip they were going to insert. It was a crazy experience.
After the surgery, I had to go through six months of INTENSE physical therapy. It was a full time job, from ten am to six pm, I was with the therapist. The hospital was starting to feel like a prison. Caged in by the blue walls with paintings of kids on it didn’t cheer me up. All I wanted to do was see the city of Los Angeles. After six months and non stop therapy, I was finally able to walk again and it felt like getting my wings and flying. I couldn’t believe it! I was walking! Leaving LA was bitter sweet. Although it may have been an intense situation for me, I grew fond of my doctors and therapists. They may have been some of the best doctors I have ever met in that hospital. I also had cousins there and they always came every day to see me, it was sad to say good bye. When I landed back in Florida, I was greeted to my family with surprised faces. They haven’t seen me walk in years and had no idea what it would be like for me. After twelve years with those “bionic hips,” as I like to call them, I had to get one of them replaced again. Luckily there was a doctor here in Orlando that could do it.
Arthritis does not just affect the joints, it can also affect the heart. The most traumatic experience of my life happened in 2004. So bad, I tremble just thinking about it. It was a Sunday night. My father, mother, my cousin, who was staying with us at the time, and I were relaxing watching TV. Everything was fine, nothing going on. All of the sudden, I started shivering uncontrollably. My family looked at me and asked me what was going on. I couldn’t say anything but “I don’t know.” My cousin got blankets and put it on me, it didn’t work. Eventually I started shivering so bad my cousin had to sit on me just to stop it, but nothing worked. Finally it stopped, it had run its course. I didn’t know what happened, my family didn’t know what happened, little did I know, that wasn’t the end.
Later that night, I suffered shortness of breath. I was rushed to the emergency room around midnight. Luckily my father was a surgeon there and he got me looked at right away. Once again in my life, I had been prodded and poked with needles, attached to machines that gave me medicine, and no one knew what was wrong. Eventually everything got worse, my JRA got worse, my heart started to retain fluid. I was admitted into the ICU. Again, none of the doctors knew exactly what was wrong, I was passed from one doctor to another. Finally they had to transfer me to a special hospital in St. Petersburg for children with Arthritis.
Everything kept getting worse, my heart got worse, and for some reason, I wasn’t able to swallow. The doctors thought I had some kind of crazy overseas infection so whenever they came to see me, they had to wear a mask. There was a day, where I felt like I was going to die. It was a morning, and I was laying in my hospital bed. My mother and father were sitting in the chairs in the room. Gradually, I kept getting colder and colder. My body felt as if it were floating on clouds, and I couldn’t hear anything, but I could see what was going on. The doctors were rushing in, my mom and dad were panicking, and I was just laying there wondering what was going on? My eyes started to get heavy and I could feel myself sinking into the bed as if it were quicksand. To be honest, I kind of knew I was dying, so I started to pray. But, it felt good, for once in my life I felt like nothing was wrong, like all my pains were gone! Then, everything came to. I could hear, I could see the doctors gathered around just looking at me and starring at the heart monitor. So I said “what is going on?” My mom and dad hugged me, the doctors asked me a few questions; “What’s your name?” “What day is it?” Apparently my heart beat dropped significantly and if it wasn’t for the medicine they administered, I most likely would have died. This was the first time I ever saw my dad cry.
So this brings me to today. You would think with all that had happened to me, I would be a miserable person. On the contrary, I am a pretty happy dude! I consider this disease to be a blessing. I keep thinking to myself, “what would happen if I didn’t have this disease?” After everything that had happened to me, after all the tests, surgeries, therapy, why do I smile? Well it’s easy, life is good. Things can go only up from here. I’ve had many amazing experiences I could share with other people with arthritis. I have an amazing support system. Thankfully I have my disease under control and I’m able to do a lot of things I never used to do. So, don’t take the simple things for granted. Be thankful you can walk normally, lift your arms above your head, tie your shoes, because in the end you don’t know how many people would wish they could just do the simple things.