Since my own Lyme diagnosis and battle with Lyme Disease, I’ve come into contact with many, many people who are also battling the disease. Amie Levasseur and I started Lymebuddies (www.lymebuddies.com) to try, as best as we can, to help others with the disease and their families. It seems like the very least we can do to try to make a difference. But that alone didn’t seem to be enough. Amie and I also started two annual events to raise awareness about Lyme Disease and to bring the Lyme community together to help aid in spreading information and support throughout the community. One of the events, the Jimmy the Greek’s Maine Mall 5K for Lyme Disease Awareness, in it’s second year, is one of the largest events in the state of Maine bringing this community together. Together with Jimmy the Greeks South Portland restaurant and the Maine Mall, we work hard to spread information about the event. However, it came a huge surprise to have been contacted by a woman in Indiana who wanted to participate in our event. It seems that she too has chronic Lyme and battles it daily. One of her goals was to run a 5K specifically to benefit Lyme Disease awareness, and low and behold, it was our event she chose to participate in. Below his her account of her struggles with the disease and her view of being at the 2nd annual Jimmy the Greek’s Maine Mall 5k for Lyme Disease Awareness.
I wanted to take a moment to share my experience with everyone. I am 36 year old lifetime athlete. I contracted Lyme Disease in either 93, 94 or 97 from what is remembered by a tick being seen. As we all have learned that you don’t necessarily remember a tick bite; but these are the three times I do remember ticks attached. I was finally diagnosed in 2002 after no one in the medical community knew what was wrong with me; in fact I had to loose my vision totally in one eye and partially in the other as well as partial hearing loss in one ear before doctors took notice; because my pain, stiffness, and fatigue was attributed to a litany of “diagnoses” (chronic fatigue, years of ‘abuse’ on my body playing sports, depression, and the possibility of MS) It took a retinal surgeon who I was referred to b/c of my blindness to send me for testing for Lyme and co. The tests came back “unequivocally” positive for Lyme and Bartonella. I then was given the standard protocol of 3 weeks of Doxycycline of which did nothing. After several minor flare ups and remission status’ I came out of remission in 2011 after a 3 ½-4 week battle with campylobacter. This particular flare up put me in a wheelchair a week after I ran my first ever road race. I could not get any doctor to acknowledge my flare-up or Chronic Lyme Disease status. I felt lost, unheard, mis-understood, and started to question myself. Again, I was being told that it was normal to feel this way.
I some how got myself out of the wheelchair after between 2 ½ and 3 months and started training again; this time I decided I was going to do it big. I trained for my first half marathon. I completed my half marathon and felt extremely strong; the toll it took on my severely compromised body was that I was showing signs of kidney issues and luckily I had a great friend and RN with me (Sheila ‘she-she’ Counterman) who started supportive assistance and was able to relay to the appropriate people the kind of assistance I needed. But, I completed my first ever half marathon! I made it my mission to try to make people aware of Lyme Disease and how mis-understood it is. I decided to find a Lyme Race to participate in. In my quest I stumbled upon Angela Coulombe, LymeBuddies.org, and Jimmy the Greeks race for Lyme. I decided I WILL participate in this race. After much communication with Angela and her tireless efforts I was given the news that the whole trip had been coordinated and my RN was coming with me just to be safe. What a blessing, my dream and mission was coming to fruition. I was prepared for what came next.
I was so moved, touched, surprised, and empowered by being around others who had heard the same long story as I and I was finally understood, validated. Hugs were plentiful, phrases like “I get it” were therapy to my soul. When I finished the race and at the post race festivities I was in tears and wrought with such emotion at the support and love that was there for the Chronic Lymies. A piece of my heart is and will be always in Maine, and I know that as I return year after year to participate that we are making a difference no matter how small and no matter how slow the progress is. Thank you Lyme Buddies, Angela Coulombe (lymerunner) and the Maine Mall for making a hope, evolve into a dream, evolve into reality. I love you guys…See you next year! -LymeRiot
For me personally, there is no greater feeling than that of being able to help another person and I was only too happy to have made this new connection to LymeRiot!!! I feel blessed that though I do have Lyme, I also have developed friendships that inspire and motivate and this is just one example of such. I can’t wait to see you back next year, LymeRiot!!! Love you too!!
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