2nd Annual Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness

Posted by admin | Posted in Uncategorized | Posted on 24-05-2013-05-2008

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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.

May is Lyme Disease Awareness Month in Maine

Posted by admin | Posted in Uncategorized | Posted on 24-05-2013-05-2008

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Since being stricken with Lyme Disease back in 2007, and being incapacitated by the disease for over a year and a half, I understand the suffering many people with Lyme go through. When I was really sick, the only way I could make sense of why it was happening to me was that maybe, just maybe, I was meant to do something about it. Reaching a point where you see very little progress in your recovery is a hard place to be and so I decided that when I got well, I would try my best to try to help others with the disease. My good friend and Lyme buddy Amie Levasseur and I decided for form Lymebuddies to be the human voice at the end of the phone to help support those with Lyme. We also set up two yearly events: Lyme-Aid, a one day music festival that this year will take place on Sunday, September 15, 2013 at Thompson’s Orchard in New Gloucester (details at Lymebuddies.com) and the Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness.

We were very fortunate to have the support from our local TV station, WCSH 6, who aired a whole week of PSA’s around Lyme Disease, it’s prevention, awareness and of course, the 5K race. I cannot thank Sharon Rose at WCSH6 enough!!!

Full story here: http://www.wcsh6.com/news/local/story.aspx?storyid=240970

Boston Marathon 2013 – A Finish Line Volunteer’s Perspective

Posted by admin | Posted in Uncategorized | Posted on 01-05-2013-05-2008

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It has taken me a long time to write this post. On April 15, 2013 my friends and I were all so excited about volunteering at the Boston Marathon (pictured right, l-r: Karen, Lisa, Lara, Martha, me, Joanna). None of us could have ever imagined how the day would end. I’ve spent the last two weeks almost in a state of shock, grief and denial. Thanks to my very good friends Angie and Trevor Spencer over at Marathon Training Academy, for helping me talk about the events of the day as seen by myself and my friends who were working finish line security in Sector 6. Below is an audio interview I gave to Angie and Trevor, my clip starts around 21.12 mins in.

Here is a quote from a written piece I gave to them:

“I would say that everyone we encountered during the event and after seemed to all pull together, although everyone was scared, we all worked together to do what we could do to help and I am left with the lasting impression that the real, true best of human nature was on display that day more so than the evil. I will never forget how fast the medic volunteers rushed to help the injured as well as other first responders. Quite incredible.” -Angela

Since I could not write any of this just for myself, here is the account of events I gave to Angie and Trevor for their special tribute to the Boston Marathon based on what I felt on the day, saw on the day, experienced on the day and my reflections today:

In 2012, a friend and I set a goal to train for and run a marathon that would qualify us for Boston, (see my earlier post http://www.lymerunner.com/?p=417) which, as you know, is a runner’s Mecca. It’s the world’s longest standing marathon and most prestigious, either you qualify or you raise lots of money to run for charity. Two of us were fortunate enough to qualify for 2014: me with a time of 3:41 and a friend with a time of 3:40. Because we hoped to run it in 2014, we thought it would be a great idea to go down and volunteer, to give to runners and help in a very karma like way, so that when we run it in 2014, we receive back the same karma. Also, meet new friends, speak with runners, get a lay of the land, but mostly, really to give support and help to runners and the BAA. Three women from Saco as well as myself met two other friends from MA in Cambridge the Sunday before the race, all of us volunteering together in what we thought would be a great girls weekend away.

We thought ourselves very fortunate that a college friend was able to get us a spot in Sector 6, as finish line security, our sector starting right after the finish line. Our responsibilities were to direct runners towards water, Gatorade, blankets, their medals, or medical help. It was also to direct VIP runners down the VIP chute and to keep the medical lanes open so that medics could get from the finish line to the end of the water line and back again to the medical tent which was positioned in the middle of our sector. And so we started our day at 9:30am at an introduction meeting, picking up our volunteer jackets and badges, name tags and security badges and set off to work.

The day was going great. We got to see all the first place winners come over the finish line, Lelisa Desisa Benti for the first man, Rita Jeptoo for the first woman, as well as Tatyana McFadden, the women’s wheelchair winner and Hirouyuki Yamamoto, the men’s wheelchair winner all earlier on in the day. The day was one of great excitement, joy, sharing, caring, and a runners lovefest -high-fiving runners, seeing two of our friends who ran it cross the finish line, waiting for a third to come across.

At about 3pm, I was looking up at the finish line and saw the first bomb go off. I felt the ground shake and suddenly smoke filled the sky. I thought it was a cannon or fireworks and thought it was slightly bad planning because the last thing someone who is almost ready to finish a 26.2 mile run needs is that kind of shock. Within seconds the 2nd bomb went off and it became apparent that this was not something that had been planned by the BAA, but I could not comprehend what was happening, that bombs had gone off, because I just could not conceive of the race being attacked, nor could I conceive of people who were running for charities, for others, for their families and themselves, being harmed.

Before I knew it spectators as well as runners were coming towards us down the finish chute. People were shouting to clear the area. At that stage my friend grabbed my hand and we went towards Copley Square as medics and first responders ran towards the bomb blast. However, we needed to find our friends who were still in Sector 6 and so we went back towards the bomb blasts. We were only able to make one phone call before we lost that ability. Luckily I was able to tell my husband I was okay and my friends were able to tell their spouses the same. We were then asked to turn our phones off as we were told the bombers could use cell towers to detonate bombs. This was the first we learned that it was suspected that bombs had gone off. We were all opposite the medical tent and my friends witnessed the first wounded, including the man who had had his legs very severely injured, being taken into the medical tent. At this stage we all knew how grave the situation was and of course, we also wondered if more bombs would go off. We asked our volunteer captain what we should do and she replied that she did not know because this had never happened before. We were then instructed to clear the streets, meaning, get all of the water that was piled in cases four high by four or five wide out of Boylston Street so that more emergency vehicles could get through. While this was happening there was the constant sound of sirens going off, armed personal running up the street, injured people being brought into the medical tent. Everyone worked to form a chain to clear water as fast as we could. When we could do no more to help in that way, we were instructed to clear the square along with all the remaining volunteers and runners who were down in that sector who did not have any medical training or background.

We walked with many, many people out of Boston and into Cambridge. Along the way we passed many people who were in shock, like us. We saw mothers comforting their crying and frightened children. We saw people who were just broken down crying, unable to move. We saw people opening up their homes to take in runners and others who need to collect their thoughts, eat something, and get warm. We saw so much help on the streets and so much compassion amongst everyone there.

As we were making our way out of the city two shocked and dazed male runners saw our yellow volunteer jackets and came up to us to ask us where we had been on the course. When we told them the finish line they wanted to know if we had seen their families who they described to us. We told them we had not, and as they had not received their blankets and were completely shivering and obviously very, very cold, my friend and I gave them out volunteer coats to keep them warm and as a way to try to help them keep going to find their families. To this day I do not know if their families were okay nor who they were, and hope they were all spared.

We were all in a news blackout until we had reached Cambridge and even then, all we could think about was going back home to Maine and not being in MA. We did not watch any news, though we all were able to put our phones back on and hear from friends and family what they were seeing in the news. At that stage I sent a text to a friend who is a news presenter at our local TV station to let her know we were there but okay. She asked if I’d phone the TV station to do an interview. It was about 5:45pm at this stage and it was only while I was on the phone listening to the live news program I had phoned into that I learned exactly what had happened and how grave the situation was. Mine was the last interview before they cut to President Obama addressing the nation.

The events of the day seemed surreal. It is so very hard to come to grips with the idea of the bombing because it is so incongruous with the ideals and spirit of the marathon and what the marathon represents in my mind and the minds of so many. I would also add that the BAA has been fantastic throughout all of this. They have been in touch almost daily, giving us updates, information, access to free counseling and information about PTSD. Our Sector leader and team captains have also been in touch daily. We have all checked in with each other to offer support and comfort as we all grapple with the events of last Monday.

I probably would have so much more to tell you and have probably left out so many details that I would have included last Wed/Thur but it has also been very hard to talk about this let alone write about it (thus my Lymerunner blog is still not updated!!) so please feel free to ask me any other questions you may have as you read through this. Also, I would say that everyone we encountered during the event and after seemed to all pull together, although everyone was scared, we all worked together to do what we could do to help and I am left with the lasting impression that the real, true best of human nature was on display that day more so than the evil. I will never forget how fast the medic volunteers rushed to help the injured as well as other first responders. Quite incredible. And though I would be a little shaky at the start, I would also be hugely honored if I did get into the Boston Marathon next year, to run for those who were affected by it’s tragic ending this year.

As you know, I started a 5K for Lyme Disease Awareness because first, running played a huge part in my recovery from Lyme Disease but also, because the running community has always been such a supportive, determined, strong and compassionate community. The marriage between the two communities means so much to me. The race is scheduled to take place this Sunday, April 28, 2013, 9:30am at Jimmy the Greeks Maine Mall restaurant in South Portland, Maine. However, when I first returned from Boston I did not think I would have the energy or desire to go through with the race. But I realize that is not what anyone in either community would want. And so, Lymebuddies, who works with the Jimmy the Greek and the Maine Mall to put on race, have decided to donate a portion of the proceeds to One Fund in honour of the victims in Boston. Seems like one of the best ways to move forward.

Please check out Marathon Training Academy’s full tribute to the Boston Marathon here: http://marathontrainingacademy.com/boston-marathon-tribute