Wednesday, August 13, 2014

Lyme Bites - Runner's World Cover Contest

This is a bare bones post. Telling it like it is. No sugar coating. Just real life, living with chronic Lyme disease, written by a Go Getter, Goal Setter, Dream Chaser, Fundraiser, Ultra Marathoner, and Lyme Warrior.

Just before the midnight hour, I took my pup outside and gazed above. I was in search of a shooting star but that search became short lived. There would not be a meteoroid show for me tonight with the significant cloud cover. I decided to call it a night. No time for star gazing. My pillow was calling my name.

But here I am, in utter silence, with my pup practically spooning with me (I know, he shouldn't be sleeping in my's tick season) but I can't say "No" to a snuggle pup. The hubby is in the Big Apple and I'm restless to write. It has been awhile. A LONG while. I have blog posts started but never finished. Reviews of events that are calling my name. Thoughts and ideas swirling around in my head.

I'm not so sure why I'm having this agonizing case of writer's block. I have plenty of material and inspiration, all around me. I honestly think I am fatigued and need a trip to the beach, where I can begin to heal from the exhaustion. I've been pushing myself really hard for awhile, gasping for air when there is a lull in the activity. My hubby often says "You don't have to do Everything." But if I sit, I become restless. It is difficult to focus. I am amazed at myself at what I do accomplish. But I can feel the lull of my body, veering towards the slow lane. If I ignore this signal and keep going with high speed adrenanline, I will crash and burn.

My everyday struggle with Lyme is tricky to talk about. I like to pretend that "I've got this" when half the time, I start a long distance race or a project, and I have no idea, if I will finish. I just have to Believe that I will accomplish whatever I set my mind to do. I suppose you could say that I am an optimist. I am defying all odds, running crazy ultra marathon distances, finishing the race (all races except for my first attempt at a 100 miler and stopped at 100K distance) remaining injury free, while battling chronic Lyme disease. 

My everyday chronic Lyme struggles, that I fight to overcome, include decision making, word finding, chronic fatigue, and following directions. My GI issues from the Lyme are getting worse too. My appetite has pretty much disappeared. My food intolerance list is getting longer everyday. I went to a party over the weekend and ate steak and vegetables. No Carbs. No Desserts. I took one sip of the wine and had to pour it out. My body wasn't having it. On my "good days" I manage my pain through running and exercise. However, after I have completed a long training run or long distance race, I have to prepare myself because sometimes I crash hard, which is known as "herxing" in the Lyme world. And then, I must rest.

Meanwhile, I am becoming more immersed in this whole Lyme disease underground world. It is fascinating. Hours upon hours, I soak up information to help me understand treatment protocols and the advocacy work that needs to be done. The Lyme disease underground world consists of medical research, protests, advocacy, and treatment. I've learned how Lyme literate doctors are being threatened to be sent to jail for treating Lyme patients, listening to infectious disease doctors openly talking about how the CDC is a government watchdog, carefully monitoring the treatment of Lyme disease patients, Lyme patients pleading for new treatment, or better yet, for a cure, when they have run out of options, and the Google search discovery of Lyme disease symptoms that is a mile long. 

The CDC just announced that there are ONE MILLION American's living with Lyme disease. This number is higher than the number of American's diagnosed with breast cancer last year! 

LYME DISEASE IS A PUBLIC HEALTH EPIDEMIC and the CDC has done nothing to change guidelines for treatment or  fund research for better testing or to find a cure. Meanwhile, one million American lives are slowly falling apart.

I have spontaneously found myself with tears recently. It was during random situations. Once, while driving home from the grocery store, listening to a poetic song. I was tired and had felt overwhelmed at all the decisions that needed to be made, as I passed each food isle. The second time was after dropping off my son, at the first morning of soccer camp, and not being able to find the camp right away. He was a half hour late. I think the tears arrived unannounced because of my frustration. I wish I was never late but I seem to have difficultly with finding new places and time management. Huge chunks of time escape me, no matter how many alarms I set on my smart phone. 

I am feeling the loss of who I wanted to become and realizing who I will never be. My dream was to be a clinical psychologist with my own practice. I had to compromise my dream because I couldn't take the GRE. I went to a graduate school that did not require the GRE and it took FIVE grueling years to receive my Master's in Social Work. And now, I will most likely never be a licensed social worker because NASW has changed the guidelines for accreditation. I have lost credit for all my 100 plus hours of supervision. However, I'm not sweating it. And I refuse to go back. The past is the past. I want to keep moving forward. I am currently studying to become a personal trainer. I have to recreate my life so that it will work for me and allow me to help others, as I battle this debilitating disease, day in and day out. 

This isn't a pity party. This is an awareness post to let others know that living with Lyme isn't easy. There is so much to work to be done. Most Lyme disease patients are too sick to advocate and are viewed by health professionals, as individuals needing mental health treatment, not treatment for the symptoms that have manifested from the Lyme disease lurking in their bodies, for several years. 

The CDC doesn't recognize the existence of chronic Lyme disease.

My daughter has Lyme Disease and I often wonder if I passed this on to her in utero? I'm certain my hubby has it too but he keeps testing negative. Our pup most likely has Lyme because we find a tick on him, at least once a week. I'm terrified of ticks and avoid grass, if, at all possible. I know it sounds absurd but Lyme disease is Everywhere! It's the ticks you don't see, that latch on to your scalp or on your back or behind your ear, that you must fear. We are now learning that mosquitoes, mites, flies, fleas, rabbits, rodents, deer, and birds all carry Lyme disease.

Do check ticks everyday! Wear insect repellant! Wear long pants, long socks and a hat, when you are in the woods or a grassy field! Have your lawn treated!  Do Tick Checks Everyday!!!

Simple precautions to fight back and keep your family safe!

Am I over reacting? I think not. My tears are not only for what my family and I have endured but for the many Lyme patients, and for so many friends, who are lost in the Black Hole. They are the ones who need the most Help. And they need Hope. This is where my running comes in. Every time I run, I think about that place of darkness, when I felt like I was dying and being treated like a guinea pig by the doctors. Not one doctor correctly diagnosed me, 19 years ago. If I only knew back then, what I know now. My mind and body wouldn't have to fight everyday. I might have been given the correct treatment and been cured.

I run to give Hope with those individuals living with Lyme disease and chronic illness. I run to help raise money to fund research for better testing and to discover a cure. I run to make a difference. It is my way of giving back to the community.

And this is what inspired me to enter the Runner's World Cover Contest! I need your help! The contest ends on 8/15.

 Please click here to vote!

You can vote everyday via computer or smart phone. I would love to have the opportunity to bring more awareness about Lyme disease and to give hope to those living with Lyme disease and other chronic illnesses. Thank You so much for your support! 

Peace, Love and Happy Running ~

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