I was thirteen years old when I started experiencing chronic pain. It started in my elbow and then my big toe. I played sports as a child, so we first wrote these pains off as sports related. It wasn't until I sprained my ankle at a wrestling practice that my parents started to question the nature of my pain. After six months of being told I had a sprained ankle, the doctors finally decided to look at it as something perhaps a bit more sinister. Knowing what I know now about diagnosing disease, I cannot believe it took that long for the doctors to think it could be something else. This should have been when the light bulb went off for me about taking my health into my own hands, but I was 13 and arrogant...not to mention pissed off that the one opportunity I thought I had to make my dad proud of me was being stripped away.
As my pain worsened, the doctors ran blood work and took x-rays and came to the conclusion that I had juvenile rheumatoid arthritis. This brilliant conclusion was drawn because they couldn't figure it out. Textbook RA is a symmetrical form of arthritis and usually impacts the fingers and wrists first. While not all those that have RA test positive for Rh factor in their blood, absence of this in the blood requires the other hallmark signs of RA to exist for the diagnosis to be made. I had none of them, but since the 4 doctors involved in evaluating me had gone to med school, we didn't think the check to see if they were even remotely on track with my diagnosis.
Things worsened rapidly. I was no longer able to play sports and most mornings involved me crawling to the bathroom in excruciating pain because I could not walk. My right ankle was usually the size of a grapefruit and it was rare that I could put weight on that foot without feeling like someone was jabbing a dagger in my heel. The doctors gave me all types of NSAIDs (Non-steroidal Anti-inflammatory Drugs) to keep the inflammation down, and when it was unbearable on those, I would get cortisone shots or a prednisone pack. The pain spread into my lower back and neck, but seemed to constantly be present in my lower back. My parents kept taking me to different rheumatologists when the pain would worsen despite the medication the previous doc was giving me. Words cannot express the gratitude I have that my parents put so much time into trying to find me answers and help...unfortunately, most of the places they were looking led to dead ends.
I vividly remember one conversation with a rheumatologist that asked me how my grades were in school. "Mostly A's with an occasional B.", I replied. He said, "That's good because you will need to find a job where you use your mind instead of your body. I would be very surprised, at the rate your disease is progressing, if you were not in a wheel chair by the time you are 40. So keep your grades up and make sure you find a job where you can use your mind." Most 14 year-olds would have sunk into a deep depression and given up on life at this point. I couldn't do that. When people tell me I can't do something, it pisses me off and makes me want to prove them wrong.
And so I joined the band in school as I played drums from 6th-8th grade. I knew it wasn't football or baseball, but it was something active that I was somewhat good at. I don't really remember what my parents thought of it because at that age, I didn't really care. School started out with marching band and as I was quite rusty with my drumming skills, I ended up playing the cymbals to start. It was around this time that my shoulder joined the mix of my aches and pains. I played through the pain and did my best not to let anyone know how much it hurt. I learned to endure great amounts of pain with a smile on my face. Ironically, the bottom bass drum (the largest of the bass drums) player hurt his back and I was promoted to take his place. This put tremendous strain on my back, but I fought through it and made it through football season without failing to do a half-time show.
My Junior year of high school was a mess. I missed a ton of school. I was able to earn my way off bass drum to play the quints (5 different pitched drums connected together on a harness). This drum has to put the most stress on the low back of any marching drum. There were several occasions when we would march off the field after doing the half-time show and the adrenaline rush was the only thing keeping me going on the field. I would walk onto the track and would literally have to be carried to the stands because the pain was so great. I can only imagine the amount of concern this must have placed on my parents and band conductor as well. I am thankful that no one babied me through this time in my life as it was here that I learned perseverance and endurance.
Hopefully you have a picture of the amount of pain I was in, because most people I know today never have seen me in that much pain. I wonder sometimes if my family members remember how bad it was. I will never forget it. That pain was unnecessary and knowing that fuels my passion to show others the way to avoid it.
It was around this point that I started to question my diagnosis. Rheumatologists kept questioning about my fingers and wrists and marveling that I had no pain there. Instead of digging deeper, they kept rotating the drugs I was taking as my body built up a tolerance to them. At 16 years old I was on at least two prescription meds and was popping advil 4-at-a time like it was candy. I'm amazed I still have any lining left in my stomach.
College flew by as I finished my undergrad in 3 years and decided to take a year off before going to Law school - had to get that job using my brain! I ended up in a career in technical support that eventually landed me in Fort Lauderdale after a promotion, and Law School never happened. I had to get a new rheumatologist down there, and was too lazy to get my records transfered to his office. It turned out to be a huge benefit as the doc was required to take a full medical history and he said, "Joe, I want to run a few more blood tests and take some x-rays, because every symptom you have leads me to think you have something other than RA." Finally, I thought, someone will find the answer and then I'll be cured. How naive was I? Even after the results came back positive for HLA-B27 - the primary gene implicated in the development of Ankylosing Spondylitis - and I was told my L4-L5 vertebrae were fused together as well as both SI joints, I still was hopefully because I felt like now that my disease had been found, there was hope for improvement. I researched new medications, possible surgeries, but all I found out was that doctors didn't know much about the disease, and that very little was known as to why AS developed in people.
I knew what I had, and was put on a new wonder drug called Celebrex - yes, the same one now known to be linked to increased risk for heart attack. I would soon come to find out that the diagnosis I was so relieved to get was insignificant in my healing process. Not much would have been different in the steps I took to get to where I am today than if I had been diagnosed with Diabetes, Cancer, MS, etc...so in essence, it didn't matter how it began.
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