Wednesday, May 8, 2013

Part I: My Private Struggle

A quick synopsis on why I have never told many people I was sick and why I hid my Lyme Disease diagnosis for a long time:

I have been sick for over 10 years and am an incredibly private person. Until now, I only gave specifics of my illnesses to those closest to me and left everything else very vague. I did it to protect myself--build barriers--so that it could be used against me as it has been before (a story of extreme betrayal that I will save for another time). But most importantly, I now believe I did it because of my pride. I have always taken very good care of my physical-self, working out very hard and eating healthy, and having people know that I was 'sick' was embarrassing to me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation, especially with my guy friends (click here to see what I am talking about). It has never been something I was comfortable sharing.

Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors best efforts. It was hard to explain why I was still sick after all of the medicine, surgeries, and procedures...I did not know why and my doctors did not know why. Finally, in June of 2012, I was diagnosed by a Lyme Literate Medical Doctor (LLMD) in DC, as having Chronic Lyme Disease and several co-infections, including Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms. This diagnosis was like an umbrella--it covered every single illness I had ever been diagnosed with, because those illnesses are all symptoms of Chronic Lyme, "The Great Imitator." 

Relieved that I now had a reason to why I wasn't getting any better from previous years of treatment, I began telling my local doctors the 'good news.' For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. I knew that treatment would be grueling, but it was much more favorable to treat it for a few years and move on with my life than to live a life wondering why I would never get well. 

I quickly learned that Lyme Disease carries many negative connotations. I had some doctors tell me that it does not exist and my DC specialist was taking advantage of me for profit. I had close friends and extended family members tell my family that it is simply a 'rich man's disease that does not exist in reality' and others simply would roll their eyes and more or less say 'get over it...'. I was written off by most people, some friends telling others that Lyme was not a big deal and I was being dramatic. I had one friend tell me, "well you have Lyme..and I have fibromyalgia. I don't see what the big deal is. I know what you are going through and do not understand why you have made it out to be such a big thing." Basically, get over it and move on.

I became very isolated--partly due to the reaction of other's to my diagnosis but mostly due to the nature of the treatment (read more about that by clicking here). The protocol to treat Lyme disease is lengthy and actually makes you much worse before you get better. My life was filled with complete darkness and depression--I could barely get out of bed to go to the bathroom, I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain and faced symptoms I had never even had before. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day. I was too sick to answer the phone, even send a text message. This time was truly the darkest days of my life--I was hopeless. This link takes you to an excellent article which touches on what it is like to be going through treatment: click here. My brain was so foggy that I could not think straight, much less walk straight. I would forget what movie I watched the night before and watch it again all the way through without knowing I had seen it recently. My short-term memory was shot. I was beginning to wonder if I was going crazy. I was desperate--and needed to come up for air. 

I had to quit treatment for a few months, which was devastating given the length of time it was going to take to begin with. It turned out my body could not handle the first step of treatment and I was having severe herxheimer reactions. (Whats a herx? Click here to find out.) I was having a massive healing crisis, the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released, and if the amount of toxins get too high, it can wreak havoc on your body. Herxing is good because it means that you are killing the bacteria, but in extreme cases can lead to death.

I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist here in Homewood (she is incredible and will require a separate post just on her healing abilities). I got my body back in balance and began treatment again in March and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job (it requires total commitment, and will be discussed in a later post).

Click here to continue to Part II: My Public Battle to learn how I found the bravery to announce my disease to the world on a platform that would never allow me to take it back--facebook and this blog.