Sunday, December 7, 2014

Trials and Tribulations of a Lyme Disease Warrior and sometimes, Ultramarathoner

Hello! My apologies for my disappearing act. Life has been a little bit hectic, and difficult to navigate. My health has been challenging, and frustrating me to the point where I have seriously considered seeking radical medical treatment and retiring running the distance. I am riding a roller coaster, as I battle this invisible disease that lurks inside my body. Without intention, I didn't write a single blog post for almost a month as I dug deep and evaluated my next steps. Believe it or not, I am a very private person. I think this is why I do not write many race reports. My races are sacred events where I experience a gamut of emotions and I'm not always ready to spill them into cyberspace.

So why have I chosen tonight to log into my blogger account and write? Maybe it is because I would have been up anyway, trying to catch a glimpse of the Geminid meteor shower? Or because of the full moon that will most likely prevent me from getting restful sleep? A full moon has a way of luring dormant Lyme disease symptoms to a dance party, bopping them around in your body, not allowing permission for your weary self to just chill out. I often call this my "zombie mode." You are awake, but your mind goes into a trance like state. For me, this usually happens in the evening, before midnight. And then, as the midnight hour approaches and stillness falls upon my house, the magic happens and my brain is ready to go again. I am the most productive when everyone else is sleeping. My fuel is the moon light. Many Lyme disease warriors will attest to this midnight magic. Tonight, I decided to take advantage of the moonlight magic and let the words spill out.

I haven't written in a looong time and I truly miss it. I sometimes wonder what I'm most passionate about - writing or running? And if I'm honest with myself, it is writing. Much like running an ultra marathon, completing my first novel terrifies me. This was discovered during my soul searching this past month. It is the only area in my life were I am a perfectionist. Once I start writing, the words usually fall into place but I edit so much afterwards, that it becomes a chore. This stems from my grad school days when I wrote endless papers for my Master's in Social Work.

This post is a rambling essay of collective thoughts because there has been so much I've grappled with this past month. Hmmm...who am I kidding? It has been more like this past year. Even though I received the best kudo's ever for my physical this year, my racing has started to significantly become more difficult. There have been several times, while I was out there, running the really long distances, and some shorter distances too, when I was battling the psychological demons, asking myself, "And why are you doing this?"...

Running the distance is SO hard.

Not that it was ever easy. But lately, it is a long, continuous uphill mountain that never seems to end and my body is screaming at me, while I am feeling pain that I have never felt so intensely before. The type of pain that prevents you from running another step during a race and you have to make the choice to quit or walk the most you have ever walked in a marathon, just to cross that finish line. This happened to me during the Marine Corps Marathon this year, at Mile 19.

And lately, my chronic fatigue has been in full throttle. I am so tired. Like, really, really tired. During the JFK 50 Miler this year, I wanted to lie down on the side of the trail and take a nap before I even got to the Mile 27 aid station. This has never happened before.

Pause..........................................................................................................................................

This is really hard to type. Because once I hit publish, it is my truth. I have been struggling so much but I want to remain strong and hopeful. I want to give those who can't walk, a reason to never give up and to wake up tomorrow with hope in their heart. I feel like I am tearing that all apart. And I am sorry. I wish I could say running will cure you of your Lyme disease. My life is 100% better now than when I wasn't running and battling this debilitating disease but you have to be one tough mother runner to do what I do.

I purposely challenge myself to feel alive. To experience the most amazing feeling of accomplishing a feat that I never thought possible. It is exhilarating. But it comes with a myriad of physical and mental obstacles that you must overcome with each long distance training run and race. I wish running was effortless for me. I wish I could strive to set new PR's. But I am afraid of disappointment in myself and fearful of injury.

I have debated for over a year now about getting a picc line and intravenous antibiotics. It is a controversial treatment for those with a Lyme disease diagnosis. It is rare thing when a mainstream doctor will administer this treatment. I am one of the lucky ones who has been given this option. However, I am fearful of this treatment. I will not be able to run or exercise intensely for at least one month. I believe that exercise and running help detoxify my body of Lyme and help control my chronic pain that once invaded my entire body - my neck, my shoulders, my back, my hip joints, my leg muscles. The pain was so bad that I used crutches continuously for 6 months for mobility and then every morning to get out of bed for 15 years! The pain slowly disappeared as I pushed my body to start moving. But the pain in my ankle bone is relatively new and it is severe enough that I must consider my options before I continue running the distance. My doctor believes that the Lyme has found its way into my ankle bone. I have heard that IV antibiotics are the one thing that can "cure" Lyme disease. But I believe, my chronic Lyme disease will not go away completely with this radical treatment. I have been living with this disease for 20 years. If anything, it will go into remission for a short period of time. Is it worth the pain and suffering to be symptom free for a few months??

I can only imagine what it must be like to wake up one morning, and not feel fatigued or fight brain fog or run a race without my ankle getting inflamed.

Or do I continue what I've been doing? And struggle during every race, mile after mile, after (endless) miles. Recently, what has been most difficult to accept is not finishing a race. This is another first time experience for me this year. In November, my JFK 50 Miler race turned into the JFK 38 Miler. I was soo heartbroken when I didn't make the time cut off this year and was denied the experience of crossing a finish line that I had crossed not once, but twice before. But that is another blog post that may get published one day.

I have been running since my JFK 50 DNF but it has been distances under 10 miles. Like, I mentioned before, I am tired. My heart is not yearning to be a badass right now. So where does this leave me as a runner? Do I defer the Dopey Challenge? And my 100 miler at the end of March? A goal I have dreamed about achieving for a couple of years now. One thing is for sure, I will never stop fighting for a scientific proven cure to be found for Lyme disease. I wouldn't wish this dreadful disease on anyone. Until it touches your life, you have no idea how difficult it is to get up each day and wear your Lyme Disease Warrior cape.


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