Who knows how it all began? Who cares? Part 2

Last time I talked about how I found out I had Ankylosing Spondylitis. Initially, this revelation did not change anything.  In fact, it was a bit more depressing as I found out there was permanent damage done to my spine and a potential for it to get worse. I managed well on Celebrex for a while as it wasn't as harsh on my stomach as the other meds were, but the Vioxx/Celebrex dangers were eventually publicized and I had to make a change. AS patients are inherently at risk for heart conditions due to the nature of the disease. Adding the increased risk of Celebrex to the mix was not something I wanted to continue to do. I saw my rheumatologist and asked what my options were. I was told about a new class of drugs called TNF-alpha inhibitors. The FDA had just recently approved them for use in AS, but they were extremely expensive and most insurance companies were not covering them yet. My doc managed to get an override for me and I was placed on 50mg injections once a week. I always felt like I was at the mercy of the next medication for the management of my AS. Never once was I told of any natural alternatives which should not surprise you. I even asked my doctors about diet and was told that some people notice a difference, but that it was most likely a placebo effect. So, I kept taking the Enbrel, overcoming my fear of needles as I had to do the injections myself. I felt the best I had in a long time. For 6 months it seemed like Enbrel was the answer to all of my problems.

At that time, I started noticing that I was getting sick more frequently, and when I would get sick, it would take longer to shake the cold. I was a newlywed at the time and my wife's concern over my health was growing with each new episode and each new antibiotic prescribed. I knew the Enbrel increased my risk for infection because it suppressed my immune system, so I did not argue when the docs would give me more antibiotics.  After taking 4 different courses of antibiotics over a 6 month period, my job was eliminated in a string of cutbacks. I opted to take the severance package rather than seek a lower position or a move into sales. This made things a bit scary for my wife and me as we were only guaranteed the health insurance for the next 6 weeks and COBRA coverage was extremely expensive. During this time I had 2 more courses of antibiotics prescribed and was beginning to feel sick more often than I felt well.  I knew it was the Enbrel, but I felt trapped. There were no alternative meds to go on.  What was worse: increased risk of heart failure, or being sick all the time?

My wife stumbled across several of her natural wellness books called, "One Minute Wellness" by Dr. Ben Lerner, DC. On the inside cover was listed a chiropractor located about 5 minutes from our house. She asked me if I ever tried chiropractic or if I thought it could help. I relayed to her that every doctor I had emphasized that I stay away from chiropractors; that they were not equipped to handle my disease, and would most likely injure me. One even said they could "break my spine". With what I know now about informed consent, those doctors should be happy I do not remember their names as I would file charges against each of them before the Board if I could. Anyway....my wife called his office even though I told her I would never see a chiropractor. She told me a few days later that she set up appointments for us both (my wife had been experiencing problems with migraines and other issues that were getting worse as well). If that had happened now, I probably would have been fuming, but the honeymoon wasn't over yet and I begrudgingly agreed to attend under the condition that I was not letting him touch my spine.

We went in and they took x-rays of our spines and did thermal scans as well as surface EMG readings. We were asked to come back the next night for the results. We arrived the next night and a group of about 20 patients were all huddled into what looked like a lecture room and the doctor began to explain what chiropractic was, how the body was capable of healing itself if we removed the interference to it, and told the story of how chiropractic rescued his father from debilitating migraines. It was explained why the medical model of drugs and surgery was not the answer; that those options only cover up the symptoms and are best saved for life and death situations instead of the daily maintenance of health and wellness. I can't even begin to give his message justice in this one paragraph. It was the most passionate I had ever seen a doctor be, and I knew he believed every word he spoke, yet something inside me still was not buying in. Even in my doubt, I felt God telling me I was in that room for a reason; that if I would only give this man a chance to help me, I would find that I could do the same thing for others.

We were eventually led into a private room where we waited for the doctor to give us our individual results. As he showed us our x-rays and pointed to the exact location were a massive misalignment was contributing to our problems, I began to question him about my condition. I was amazed that this chiropractor knew more about AS than any of my previous rheumatologists. It was at that moment that I began to feel I could trust this man with the care of my spine. As we left the room that evening, my wife was in tears - tears of joy in seeing hope return to her husband.

It only took 2 weeks of care for me to notice appreciable changes. My chiropractor offered monthly health talks and constantly has educational videos on exercise, nutrition, detoxification, etc...playing in his office, so as we would wait to be adjusted, we were being flooded with new information on how to be healthy. We were blessed to have the opportunity to attend one of his mini-Extreme Makeover classes. They are usually six classes over six weeks, but occasionally he would hold an abbreviated version where he covers everything in one night. My wife and I walked out of there determined to make the changes necessary to get well.

After that night, I made two decisions: 1) My job search was over because I planned to go to school to become a chiropractor and help as many people as possible in the same way my chiropractor had helped me, and 2) I naively thought I could stop taking my medication cold turkey. It seemed to work for the next 5 months until I realized there was so much residual medication in my system that it took that long for my body to get rid of it. During this time, I never got sick, my energy levels quadrupled, and people were remarking that I was starting to walk more upright than ever before.

At the end of the 5th month, the pain started to come back and I knew I was not ready to be off the medication. I was determined to use it only when necessary, with the goal of becoming medication free as soon as possible. Most of the information that this blog will emphasize are methods I learned along the way that were able to take me from 50mg once a week to 25mg once every 7 weeks which is where I am today. Not all of these changes have been easy. I still struggle to be consistent with many of them. As we go through all of the lessons I've learned, I'll try to also discuss the pitfalls of implementation and any tricks along the way I've learned to get more consistent with implementing them. I look forward to sharing this with you all. The goal in all of these things is to move closer to health and further away from sickness.

Who knows how it all began? Who cares? Part 1

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.