I know people believe I have a special passion for running. To an extent I do, but this hasn’t always been the case and in fact, has only really just started to take hold of me. What I really have a passion for is raising awareness about long-term Lyme Disease and it’s devastating effects on those fighting it every day.

I’ve now  have met many people online, on the telephone and via email who have Lyme Disease and I continue to discover more and more people who have the same questions, concerns and fears about the disease as myself.  This week alone I received news of a Lyme fighter who I will never have the opportunity to meet, yet who’s story has inspired me to continue to spread the word about the disease one road race at a time.

This person’s name is Dr Terri Royer Macknight  and she passed away on Sunday Aug 15th due to complications from Lyme Disease.  Her friend Tracy Poland contacted the Maine LD because she wanted Terri’s story to be told as a means of helping fight this dreadful disease and for Terri’s memory to be kept alive by keeping the Lyme conversation alive.

Terri was one of the founders of the International Lyme and Associated Disease Society
and  was the society’s first president in 1999. As a lecturer and author, she strived to help the medical community and the public to recognize, treat and prevent Lyme Disease. Her desire to help others also took her to Barrow, Ala.; American Samoa and into rural areas where she was able to help those without access to medical care.

To many Terri will always be a Lyme hero. To Tracy, Terri’s strength, love, support and angelic voice will live in her heart forever.

Tracy’s one wish is this: “Please help others (with Lyme) by giving the support & love they deserve. Lyme disease can kill, it happened on Sunday, just like it has many other times before. Terry was not the first & she will not be the last,but you may be able to help someone not loose their life, just by passing on this story and listening to people who can help. Thank you for helping me to spread awareness in honor of Dr Theresa Royer Macknight. She deserves honoring.”

So here is my secret: THIS IS WHY I RUN! I run to keep the conversation about Lyme going. I run to promote awareness about Lyme disease. I run to give hope to others who like myself live with Lyme disease on a daily basis. But I especially  run to honour all those who fought the fight  against Lyme with courage and dignity, selflessly giving what they could to the Lyme community.

For Terri and so many others, this run’s for you.

Coping with rain and a tummy bug didn’t slow this Lymerunner down. Having tackled a 10 mile run, a 12 mile run and facing the challenge of running 1/2 marathon tomorrow, August 28, 2010, check out video footage of Lymerunner discussing how weeks 6-7 of NYC Marathon training have gone. Also, Lymerunner completed the Breakaway 5K race in OOB last Saturday, August 21, 2010, coming in second place for her age group!

Lymerunner NYC Marathon Training WK 6-7 from angela coulombe on Vimeo.

Thank you again to Angie and Trevor Spenser, the good folks at Marathon Training Academy. Whether you’re thinking about running around the block, a 5k, 1/2 marathon or marathon, these two people have lots of information, advice and insight to share with you. They have also been very, very supportive of my efforts to train for the NYC Marathon this November and have given me tips, tricks and strategies to get through the training and ultimately the marathon. I can’t thank them enough!

Last week they interviewed on of my heroes, Bart Yasso, Chief Running Officer at Runner’s World magazine and author of the Book, My Life on the Run.  In  1991 and again in 1997, Bart was infected with Lyme Disease. Through email correspondence, I’ve learned more about Bart’s struggle with the disease and how it is that he continues to run with Lyme Disease. When I have a question about my joints, my training, Bart has happily answered my emails. It has been a tremendous help as I’ve never run with Lyme disease before and have often had questions!

Here is the recorded interview with Bart, and thank you to Angie for mentioning me, Lymerunner, (minute 22 of interview) to Bart, and Bart, again, thank you for your continued support and email help as I train to run the New York Marathon this November.

Podcast: Play in new window | Download

So many people have asked me now “What is the farthest distance you’ve ever run?”

Truth be told, not very far at all, and certainly nothing as far as a marathon! The most I’ve run in my life in one go is only about 12 miles (not even ½ a marathon!).

In fact, truth be told, when I was a kid, I thought marathon runners were crazy people – REALLY CRAZY PEOPLE!!! I would watch marathons on TV and would wonder what would compel these people to put themselves through so much self-inflicted pain and torture and this was BEFORE I even had an inkling about all the training that went into preparing for running a marathon! Looking at marathon runners on TV was almost the equivalent of watching junkies shoot up, both garnered that same repugnant, “I don’t ever want to go there with my life” sensation.

So why is it that I’ve now, with no real long-distance running experience (either pre or post Lyme Disease), decided to run a marathon and join the crazies?

I guess because after battling Lyme for 3 years, hitting what I consider rock bottom as far as being able to feel well and live with pain, having come through the other side where so many people I know with Lyme have not, this just seems like the best way to draw attention to this devastating disease.

It’s been said of Lyme, “you don’t get it until you get it”, and that’s how I now feel about this whole NYC Marathon training lark. I couldn’t understand as a child what would move and motivate someone enough to put such tremendous stress on their muscles and bodies and to push themselves beyond their physical means. But living with Lyme was like that for me. When I was really sick, every day I had to find a reason to push myself beyond the pain threshold the previous day brought. I had to push myself to endure sleepless nights followed by days of aches, pains, headaches, memory loss and the loss of my ability to do simple things like dress myself or walk upstairs. I had to deal with loss of appetite, strength and energy and the uncertainty of not knowing if I would ever regain those things I had suddenly and forcefully lost.

Running this marathon to me proves a couple of things that seem to by myths in certain medical circles:

1. Your Lyme symptoms are just the every day aches and pains of living – If this were the case, there’d be NO WAY I’d be able to even think about training for a marathon let alone physically train for a marathon.
2. Your symptoms have nothing to do with Lyme but are simply old age and arthritis – Again, if this were the case, I would still be as arthritic and even older than I was three years ago, so why train to run a marathon now?
3. It’s all in your head – well, the one thing I’ve learned from both Lyme disease and marathon training, is that you have to be very mentally strong to dig up all your mental reserves to convince yourself that you can get through it – full stop!

So, for all those out there who have not made the recovery I have, I am also running this for you! I will continue to train for the New York Marathon. I will continue to get the word out there about Lyme Disease and its debilitating effects on those affected by it. I will continue to try to debunk the myths surrounding Long-term, Chronic Lyme Disease and I will continue to fight for the recognition that those suffering from the disease so rightly deserve! I will keep the Lyme conversation going in the hope that one day a swift and safe cure for all will be found and that unnecessary suffering comes to an end.
To help me achieve this goal, please consider sponsoring me a dollar per mile I run! Every penny goes to helping those with Lyme Disease! You can use the Chip In widget to the right of this page. Thanks.

Week 5 of New York Marathon Training saw me running both a distance of 9 miles and a distance of 10 miles in one training session. It also afforded me the chance to do some nice cross training. The video below gives an update on how it all went.

Angela Coulombe, aka Lymerunner, discusses week 5 of NYC marathon training from angela coulombe on Vimeo.

“Pain is inevitable, suffering is optional”. My sister, now an OT, first uttered these words to me when were both in high school and I was stricken with a severe case of the “poor me’s”; I had just had my leg operated on after a running accident and had to spend eight long weeks on crutches. Unfortunately, this wouldn’t be the first or last time she’d have to say this to me. In all honestly, she shouldn’t have had to. I’m surrounded by a family of fighters who have battled against the odds over the years to fight things such as heart disease, diabetes, cancer, Chiari and then there was my son born seven years ago, the biggest fight to live I’ve ever witnessed.

Let’s start with my father: At the age of 41, my father had his first heart attack. It was a frightening time for the family. My mother was a stay-at-home mom with six small children to look after. My parents had a mortgage and my father owned his own business, so another loan/mortgage to pay off. I was very young at the time and didn’t fully understand all that was going on, but I did understand all the changes my family then made to help my father regain his health. There were diet changes, activity changes and even as children, we grew to know the word “stress” very well. At first making these changes weren’t easy. You’ve got a hot summer’s day with the opportunity to eat a hotdog with chips presenting itself at a barbeque, but you instead opt for salad, fruit and water. Really? But my dad did make that choice and has continued to make that choice again and again. He started an exercise regime that has stayed with him to this day of his 78th year. He also quit smoking, another feat that considering it was the 70’s and everyone was smoking, there were no cessation programs,  made it  even more difficult to achieve. He has had to battle every day since the initial heart attack to stay healthy and well  so far succeeding  and becoming  one of my biggest influences and inspirations to date.

One of my sister-in-laws has been fighting Chiari Malformation for a few years now. Her symptoms present themselves in ways very similar to Lyme and we both have an understanding of each others debilitating pain. Though I have recovered mostly from mine, sadly she has not recovered from hers. A fall off her horse back in October 2007 precipitated the onslaught of the disease which has left her not only in pain, but at times paralyzed on one side, unable to leave the house. And she bears it all with a grace and humility that is humbling and inspirational. She is also a strong advocate for her own condition which has helped inspire me to take up the cause of advocating for others with Lyme.

My other sister-in-law is fighting cancer. She was diagnosed just two years ago but has already undergone major surgery as well as many bouts of chemotherapy which have left her sick and nauseous and often times in great pain. Throughout it all she never complains and if you were to speak with her you’d never know from her lips what she has been going through. She is determined to beat the disease and is putting up a tremendous fight with a spirit, that if it could only be bottled and I could take a dose of it every day, I’d be a much, much better person for it.

And then there is my son: Seven years ago at 2:00am my second son was born at home. My mother, sisters, sister-in-laws, nieces, husband and father were all on hand to welcome him into the world. However, he was born with the umbilical cord wrapped around his neck, was bluer then blue, had lungs full of meconium and needed immediate resuscitation. For all who were there that day, the fear that he would not make it was far too great to speak of. Silently we prayed that the mid wife would be able to clear his lungs and get him breathing. But I knew, I knew my boy was a fighter. He was so strong in the womb that I just knew he would make it. And so I remained silent and to the rest of my family, uncharacteristically calm. He fought and he fought and if ever there were inspiration in my life to continue to fight and believe that the worst possible outcome is not a foregone conclusion, it was experienced that morning as my son pulled through, started to breathe, kick and cry. This minor setback at birth has hindered him in no way and he has grown up to be the healthy, active and loving child!

To all these inspirational fighters, and others I have yet to meet,  I vow to continue my fight for all those battling to regain their health and well-being.  With every mile I run I feel closer to achieving that goal. You’re my inspiration and my reason for running and together we’ll all get across that finish line.

A few people have mentioned that I ought to keep a video diary of my experience training with chronic Lyme Disease to run the New York City Marathon this November 7, 2010. I kind of  like the idea too as it does put a human face on who is doing all this running. So, here we go. This week’s update is a video of yours truly discussing how the training is going. Please feel free to leave a comment (or donate to the cause!)

Lymerunner, NYC Marathon Training Week 4 from angela coulombe on Vimeo.

^ Click here or on the image above to read the full story titled: Back on Track.

In an effort to get the word out and raise awareness  about Lyme Disease, I’ve been doing a few local newspaper interviews. Never doubt the power of local press. Already I’ve had quite a few phone calls and emails from others with Lyme Disease who, like me, need someone to talk to about the disease. I’m astonished even now that there are so many people affected by this disease and it does seem obvious that more needs to be done to raise awareness about it. So, in my best efforts to do so, starting with the local press seems like a great way to go. Here is an article that appeared in this Thursday’s Biddeford Saco Journal (July 22, 2010).

Last Friday, July 16, Lymebuddies, Lymerunner and Lyme Disease Awareness all pulled together to create a float for the Yarmouth Clam Festival. The theme of the festival was Local Champions: ” the champion is in the eye of the beholder, so show us who yours is!”

While Lyme Disease is not as well known as some things, and most do not understand what the disease is all about, this seemed like the  perfect way to help people understand the fight that occurs daily for people with Lyme. We are all Lyme Fighters, we are all champions.

We found out one week before the parade that our float had been accepted to participate in the parade. Unbelievably, we not only pulled it off, but managed to win second place for a non-profit organization!!! Champions – YOU BETCHA!!!!!

^ Assembling the float at Yarmouth Junior High School. The theme was a backyard theme with lawnchairs, picnic basket, hay bales and a fire. The truck’s bed had a tent, deer and trees on it.

^ Two lovely ticks rocking out to “Beat It”.

^ Amie Levasseur and Angela Coulombe of Lymebuddies/Lymerunner

^ Prepping the tick to be scary and menacing.

^ Close-up of the float’s banner. Kudos to Amie Levasseur!!!

^ Amie Levasseur, Jessica Platanitis of Lyme Disease Awareness, Angela Coulombe (aka Lymerunner)

^ Second place, wow!!!!

^ Ted St. Amand of Atlantic Pest Solutions watching on as the group celebrate 2nd place award.

^ Group photo on the float.

^ Holding on tightly to the second place trophy

^ Thumbs up to all Lyme Fighters!

^ Lymerunner being chased by a menacing tick during the Yarmouth Clam Festival parade.

^ Lymebuddies’ float on the Yarmouth Clam Festival parade route. Huge crowds lined the street cheering us on.

^ Lymerunner still being chased by menacing ticks! Aaaaagggggghhhhhh!

^ Lyme fighters waving to the parade crowds.

^ Lymerunner’s perspective of the parade.

^ Amie Levasseur holds the second place trophy high atop the Lymebuddies float at the Yarmouth Clam Festival parade.

^ Lymerunner and ticks run the whole 1.3 miles of parade route to the applause of cheering crowds.

How to make your own Tick costume. For the body, you’ll need:

1 black hoodie, 3 pairs of black football (soccer) socks, black thread, fishing line, wadding to stuff socks.
For the pincers on the head, you’ll need: 1 headband, wire, black electrical tape.

Below are my two sons wearing their homemade tick costumes during the 2010 Yarmouth Clam Festival parade. Lymebuddies/Lymerunner/Lyme Disease Awareness float took 2nd place. Thanks boys!!! You did your mom proud.

^ Click to view larger image.