Beginning Treatment

Hey didn't really feel like writing a post this time around. I did want to come out and further explain what I'm up against so I made a video doing just that. Its good for me at least get it off my chest a bit, probably will be my last post until I beat this thing or it beats me. Lets hope it's not the latter!

Prisoner of Myself (My Battle with Lyme Disease)

           Bear with me here, due to my condition it makes it a bit more difficult for me to formulate a string of coherent thoughts together as my mental clarity isn’t what it used to be. So yes, my writing ability may not be up to par.

            I never anticipated that my next blog post would be dissecting my struggles with a potentially life-threatening illness, but life can be unpredictable I guess. My last blog post was written a few days before I was departing for Melbourne, Australia. I had just returned from Nairobi, Kenya in which I had an amazing time and met some amazing people as well. I was preparing to continue my studies in Australia and even had some intentions of staying there permanently if some pieces fell in place.

            When I arrived in Melbourne the beauty of the city astonished me. It was comparable to New York in architecture, but that’s about where the similarities end. The streets were clean as could be with not a single piece of trash on the ground, and I never once saw a police officer patrolling the area as there was virtually no crime to be seen. It only took me a day to come to the realization that I was going to love it here. I forgot to also mention that minimum wage was something in the neighborhood of $18/hour!

            My housemates were great, they all were from different countries and each one was extremely entertaining. Things could not have been going better, but before I could even snap a finger my life had begun to spiral out of control. I had not been feeling terrific health wise before I had left for Australia, and within a week of arriving at my new home my body had begun deteriorating. I forced a smile on my face and tried to ignore the ill feelings, still trying to go out and have a beer. But it became too difficult; I couldn’t continue to overlook the signals my body was basically shouting at me.  I just didn’t feel right, I was always tired, I felt uncomfortable and had started rapidly losing weight. When I left my home in Arizona I wasn’t sure when I'd be coming back, and three weeks after leaving I was right back home.

            Upon returning to Arizona I had every possible medical test done, but everything came back negative. I figured I had just picked up some type of bug while I was in Kenya and would get the proper medication for it and I’d be fine, but the doctors couldn’t discover anything wrong with me. Each doctor told me they knew something was wrong, but they just couldn’t figure out what it was.

            While all this was going on, my condition worsened. I woke up one morning, lugged myself to the mirror and didn’t recognize the reflection! I was used to seeing a well built vibrant man looking back at me, but now I saw a frail, miserable, pale boy. I was 180 lbs. before I left for Kenya, now 4 months later I weighed a paltry 140 lbs. The most disheartening part of this whole thing was that in an attempt to maintain my weight I had been shoveling food into me yet it became apparent that it was useless.

            Doctors continued to make up excuses for my ill health.

           

            “ You’re not eating enough, that’s why you’ve lost this weight.”

            “ You picked up some weird virus in Kenya, it’ll just go away by itself.”

            “ This might be in your head, maybe anti-depressants will take care of the issue.”

            I was horrified! I felt like I had begun the process of slowly dying, and the medical community could do nothing to stop it. The stomach pain I experienced on a daily basis was excruciating, unlike anything I had experienced before. It became so overwhelming at one point that I actually put my head through the wall in an effort to exert the pain. I experienced debilitating fatigue, so bad that it became nearly impossible to walk down the street without becoming completely exhausted. I was a prisoner in my own body, trapped inside myself. The task of even leaving my house had become just too much.

            While all this was going on I kept my composure much better than I would’ve ever imagined through this whole ordeal. I began to accept the fact that this could possibly be it for me, I’ve had my time on this planet and its ticking down now. I understand that thought seems dramatic, but I physically felt as if I were dying and there was nothing anyone could do. I picked my head up and told myself that  I would do everything I possibly could to see if there was a chance I could extend my life.

            I once again began the process of seeing doctor after doctor. This time at the realization of seeing just how badly my body was weakening they tried to give me an accurate diagnosis. EBV, IBS, Chron’s, CFS, all these different diseases they tried to label me as and I knew not one was correct. There was something more to it..

            One doctor had come to the conclusion that my symptoms matched up to that of someone with Colon Cancer and that it had been missed. When you hear the word Cancer used in a sentence not to describe your zodiac sign but to portray and define what your future holds leaves you with an emotion that can’t be described. It’s as if your heart stops pulsating, all control over your limbs are lost, nothing but a glazed over blank stare is shown. It’s the most terrifying sentence that could ever be uttered and I wouldn’t wish it upon anyone.

            I began different types of treatments with the hope of being cured but I was making no progress. In fact the treatments were making me worse. My doctor was ignoring my calls and emails when I tried to explain to him that something wasn’t right. He had told me that I’d get worse before becoming better, but it wasn’t adding up. I just knew the treatments weren’t supposed to be doing this to me!

            I sought out one last doctor to see out of desperation. Maybe my other one wasn’t right, there has to be something more to this I thought.  She was a naturopathic doctor, not covered by insurance but money had lost all value to me at this juncture. When I walked into her office she actually sat down and listened to me explain what was wrong with me. After hearing my diatribe on the medical community her initial reaction was, “ This could possibly be Lyme Disease.”

            I thought back to myself, I had been tested for Lyme already I explained to her. She replied that the test I had taken was less than 50 % accurate and that my symptoms matched up. I still wasn’t buying it, seemed like another inaccurate diagnosis by an incompetent doctor. It was a disease transmitted through being bitten by a tick. Yet I never remembered a tick bite on me. The whole thing sounded nonsensical.

            When I returned home I started researching the illness and was appalled at what I discovered. First off it is a bit difficult to diagnose as it can masks itself as 300 different diseases, but that wasn’t the real reason it often goes misdiagnosed. Corporate interests and profits among insurance companies had led to misconceptions about the disease. Though Lyme is 10 times more prevalent then AIDS and is arguably just as damaging if not caught early, it is rarely tested for due to monetary reasons. This has led to a community of people just like myself that will be misdiagnosed for years until the disease leads to Alzheimer’s, Lou Gehrig’s disease, Parkinson’s, MS or eventually drives them to the grave. I could explain to you how corrupt the system is but it would just take too long, there are plenty of films that go in-depth about how the greed of a few has led to the death and suffering of many.

            When I called the doctor for my test results a week later I did in fact test positive for severe Lyme Disease. She said that it has been in my system for years and for whatever reason it became active just six months ago. Had it been caught earlier I would’ve been fine in a couple weeks time, but I’m way beyond that point now. I have a very tough road ahead of me, the hope is that I still caught it early enough to regain my full health, but it is going to take me months, maybe even years to beat this thing. Once again, this could’ve all been avoided had I been diagnosed earlier with the proper tests. It's a scary time for me to say the least. In six months time I may be fine, or I may have begun suffering mental disabilities along with losing the ability to walk among other things. Yes, the condition is that serious..

            It’s clear to me though that there needs to be much more awareness about this disease that is preventable on so many levels. Everyone is susceptible to a tick bite, there’s nothing we can do about that. But it’s our healthcare system that ultimately kills those of us suffering with Lyme's, and that’s a damn shame!