Or, When Things Don’t Go Quite To Plan

Dear Angela

I wanted to let you know how much I enjoyed walking in the Lyme Disease event. This event represented a great achievement for my family because my cousin was able to walk with us. Three years ago, she was so debilitated by Lyme Disease, that she could not do the Lyme Disease walk around Back Bay. I remember that day and how I thought to myself, as I walked with her husband and daughter on her behalf, that if she were to get better, we would all walk together some day. Last month, that dream became a reality. The unexpected changes to the route did not diminish my experience and in fact, may have helped my cousin complete the race. She still had to shave distance off the route in order to be able to complete it by cutting through parking lots. I also walked on behalf of my husband, who was diagnosed with Lyme Disease in the early stages, treated and recovered before experiencing the horrible effects of the disease. I was pleased to be able to give him the really cool, lightweight green shirt that I got for my participation. It will be great for him to wear while biking. I met so many nice people that day. I also had the opportunity at a booth to learn more about watching for the recurrence of the disease in my husband, and how to protect my family outdoors this summer. Thank you for organizing a wonderful event. I look forward to taking part again and spreading the word about staying safe from Lyme Disease. -Alexa

Yes, things didn’t go to plan. On the inaugural event, it all went off flawlessly. This year, 2 weeks after I’d been at the finish line at the Boston Marathon, maybe in my own grief and trauma, I dropped the ball. Our 5K became a 3K due to a wrong turn by the lead car. But I’d like to post MY LYME STORY as a reminder to what else Jimmy the Greeks Maine Mall 5K for Lyme Disease means to me and others with Lyme.

In August 2007, a week after I finished running the 10th Anniversary of the Beach to Beacon 10K road race, I started to experience the first symptoms of Lyme Disease, ie, a swollen right knee and mild joint aches . As weeks went by, I started to experience more Lyme related symptoms; muscle aches, migraines, nausea, fatigue and general lethargy on top of a continued swollen right knee and joint aches . I did not know anything about Lyme Disease so did not make any connection between my symptoms and the disease. In October 2007, 3 months after the onset of the initial symptoms, a bulls-eye rash appeared on my upper arm. I showed my mother who did know about Lyme who suggested I see my PCP immediately. My PCP sent me to an ID who diagnosed me with Lyme Disease, gave me 3 weeks of doxycycline (standard CDC treatment) and told me I’d be fine.  Three weeks later I was anything but fine. I could no longer turn my head, lift my arms up over my head, dress myself, climb stairs unassisted, get in and out of bed unassisted, roll over in bed unassisted, look after my two small children or carry on anything resembling the normal life I had lived. The pain in my joints was overwhelming. Living meant dealing with the pain on a minute-by-minute basis to try to make it through the day. I phoned  the infectious disease specialist back telling him I thought I needed more antibiotics as I was so sick I could not move. He refused to prescribe more. His first words were, “We all have aches and pains”, followed by “your symptoms have nothing to do with Lyme and are simply old age and arthritis”,  (though I was only 43 at the time and had NO signs of any arthritis in all the tests done along with my initial Lyme test). I had no idea what I would do next. This was the end of October 2007.

By mid November 2007, I wished to die.  With no cure, no help and no hope in sight, I could not see myself , once an active athlete and caring mother,  living the life of an invalid while enduring the most excruciating pain I have ever known in my life (and as a veteran of two home births out of choice, I know a bit about pain).  My sister told me of  a DO who was Lyme literate and might be able to help me. A beacon of hope came into my life.

I first saw this DO at the end of November 2007. I was put back onto antibiotics and a month later, by my own request to try to not take antibiotics, I was put on the Zhang protocol  to fight coinfections with Babesia and Bartonella. Progress was slow, but progress was made.  I started to regain my strength, appetite and ability to look after my children. By April of 2009 I was off all supplements and I was able to start exercising again. Running became my saviour, my survival mechanism and the running community became my biggest support unit. By November 2010, with the help of so many, I ran the New York City Marathon in 4:12:58.

In 2012 I completed these races/ triahtlons with these times: (visit http://www.lymerunner.com/?p=417 for a recap)
January 15,  2012 – Jimmy the Greeks Frozen 4 miler: 31:02 (run in 8F weather!)
February 5, 2012 – Mid Winter Classic (10 miles): 1:24:10 (slightly warmer, 24F)
April 7, 2012 – Burns Run for Education: 5k 21:00
April 29, 2012 – Jimmy the Greeks Maine Mall 5k for Lyme Disease:  23:08
May  5, 2012 – Polar Bear Tri: Clock Time: 1:18:51.2
Swim: 12:42, Bike: 37:33, Run: 23:37
June 6, 2012 – Pirate Tri: Clock Time 1:26:57.9
Swim: 12:39, Bike: 48:34, Run: 22:24
July 29, 2012 – Tri for a Cure Triathlon (part of relay team Lymphomaniacs, my sister has Lymphoma, she rode, a friend swam, I ran 5K):  21: 36. (that’s a 6:58 pace mile my first PR for the year.)
August 5, 2012 – Beach to Beacon 10k: 48:58.7 (crazy hot humid day, 85F)
September 9, 2012 – The Nation Tri, Washington, DC. Runner in relay team: 46.46 second PR of the year for a 10K.
October 13, 2012 – Hartford Marathon 26.2: 3:41:35 and qualified in my age group for the Boston Marathon, which I intend to run in 2014.

So that’s my story. It’s pretty unique since I am more recovered than most who suffer from Chronic Lyme. But I also know what it’s like to feel like the disease has gotten the better of you and you want to just give up; where death does seem preferable to carrying on.

 

So, yes, the 2nd Annual Jimmy the Greeks Maine Mall 5K did not go off as planned. The lead driver took a wrong turn and our race went from a 5K to a 3K. I don’t think there was anyone at the race more upset than myself. Why, because I care passionately about things, all things. I try to be a perfectionist in all I do. And then I saw my great friend Terry Chinnock was at the race, wearing the shirt I had worn to run the NYC marathon in 2010 , in honour of her late husband, Bill, who could not find the strength to carry on the Lyme battle and took his life. I had given her the shirt after the NYC Marathon as a way for her to know people are fighting for her, for others with Lyme, to make a difference. Seeing her in the shirt at the Jimmy the Greeks 5K, I couldn’t help but cry. Cry long, cry hard, holding Terry in my arms. We both cried. This is the reality of the disease. People do take their lives. I was there, I was close to wishing it for myself. It was the most poignant reminder as to why I try my best to now combine the two things I am passionate about and gave me salvation; Lyme disease awareness and running. No one should have to lose their life to this insidious disease. I will fight with all I’ve got to make a difference, make an impact, connect people and maybe one day find a cure.

And so, mistakes happen, but  my personal take on the race is that everyone who ran or walked however far, did so in honour of someone with Lyme Disease who cannot walk let alone run, or worse, lost their battle with the disease and are no longer with us. They may have come with expectations for achieving a PR, but instead, I hope they left the run with a sense of how much they inspired a community badly in need of inspiration and hope.

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