On Sunday March 14, 2011, I completed a 5k race called Mary’s Walk. This race was held to raise money for the Maine Cancer Foundation and has a long history in the community where I live. It honours Mary Kerry Libby who lost her battle to cancer March 7, 1997 at 44 years of age.

This was the first year I have participated in this race. Since I’ve been dealing with my own health battle with Lyme, it’s been hard for me to participate in all the races for all the causes I’d love to support. But this cause is one that is close to my heart.

When I first became ill with Lyme Disease in August 2007, my sister-in-law was diagnosed with stage 3 ovarian cancer. She had to have major surgery in November of that year, and ever since, has undergone one form of chemo after another, and has had numerous hospitalizations. Her health has remained precarious; she has never once been in the all clear since the day her cancer was discovered. If you were to meet her today, yes, her appearance would suggest something is not quite right; her hair is very short to her head, she is gaunt and quite emaciated, and yet she has a smile that is as broad and as bright as the Cheshire Cat. Throughout her many, many treatments she has remained optimistic, upbeat, positive and strong. She makes light of the numerous side effects she has suffered as a result of 4 years of constant chemo treatment with no remission in sight.

Last Christmas we learned that her cancer had spread to her intestines and things weren’t looking good. We didn’t expect her to make it into the New Year.But her indomitable spirit has kept her positive and has kept her fighting.

The day before Mary’s Walk she was readmitted back to hospital with pain from the blockage in her intestines, unable to keep food down, to keep sustenance in her frail body. The moment we’d been waiting for happened; the doctors asked if she wanted to continue chemo treatment or not. True to her courageous and tenacious self, she has opted to continue to fight on. I know she will continue her battle in the same way she started it, with dignity and an inner strength that is both humbling and inspiring.

Then there is my dear sister. Three weeks before the NYC Marathon, an event she was planning to cheer me on at, she was diagnosed with Lymphoma. It came from out of the blue as quite a lot of cancers do. Her chemo started the week after the marathon, and she was right by my side, cheering me on in NYC (I saw her and my other sister at mile 8 on route!). However, it later transpired that her doctor suspected she may have leukemia and she spent Valentines Day of this year at the Dana Faber Center in Boston.

Like anyone who has undergone chemo knows, the impact on your life can be sudden and dramatic and most of all, very unpleasant. My sister, though worried about the possibility of leukemia, has been an amazing pillar of strength. She has openly shared all of her treatments with family and friends, enlightening us and engaging us along the way. She has maintained one of the most positive attitudes I have ever encountered, and still she has maintained her job as an occupational therapist, because she believes vehemently in helping others.

A friend recently asked me why it was that all the really nice people seem to get seriously ill, and I replied that I thought it was because they are meant to teach us how to deal with adversary with dignity, courage, strength and perseverance. This is exactly what my sister-in-law and sister embody and I have learned a great many things about coping with chronic illness from them.

It was an honour to run for them this past Sunday because every time I run, I realize how lucky I am to be able to do so. Whether it’s Lyme Disease or cancer, Chiari or other debilitating disease, I’m only too happy to do my bit to raise funds and awareness by running, and so I say, “This run is for hire.”

If you have local event you’d like me to run in, please let me know by dropping me an email at angela@angelacoulombe.com

Dear Members of the Lyme Community,

I am excited to inform you about proposed legislation in New Hampshire which will authorize licensed physicians to prescribe long-term antibiotics for therapeutic purposes to patients diagnosed with Lyme Disease.

Please Attend Public Hearing on Thursday, February 3rd at 9:00 a.m.

Lyme Disease Bill HB 295 is scheduled for a public hearing on Thursday, February 3rd at 9 a.m. before the NH House Health, Human Services and Elderly Affairs Committee.

It is imperative that members of the New Hampshire Lyme Community attend the hearing to show their support.  Please put this date on your calendar and pass the word on to your friends.  A large turnout will significantly increase the chances of passage of this bill.

The hearing will be held in the Legislative Office Building (LOB) in Room 205 and 207. The LOB is located directly behind the State House in Concord, 107 North Main Street.

Written Testimony –

If you intend to testify this year we encourage you to submit a written copy of your testimony.  Please send your testimonies to whomever you received this notification from by 5:00 P.M. Tuesday, February 1st.

Your testimony can include a brief summary of your illness and the impact it has had on your life. If appropriate you can talk about the difficulty you had in getting diagnosed and the importance of long-term antibiotic treatment in your care and recovery. Remember, this bill is all about protecting the doctor’s right to treat with long-term antibiotics if deemed necessary.

The NH House HHS Committee has indicated that they will impose a strict 3 minute restriction on testimonies.  Please do not use the names of LLMDs.  We appreciate your submissions which will help us to organize our debate.

What is New Hampshire House Bill 295

House Bill 295 is a bipartisan bill related to the use of long-term antibiotics for the treatment of Lyme Disease. It is sponsored by Rep. Daniels, Hills 6; Rep. C. Vita, Straf 3; Rep. Case, Rock 1; Rep. P. Schmidt, Straf 4; Sen. D’Allesandro, Dist 20; Sen. Forsythe, Dist 4. This bill authorizes licensed physicians to prescribe long-term antibiotics for therapeutic purposes to patients diagnosed with Lyme Disease. HB 295 will protect the physician’s rights to determine the most appropriate treatment protocol for their patients.
New Hampshire Lyme Legislation Committee

Rep. Gary Daniels (sponsor)
Rep. Carol Vita (sponsor)
Nancy Bourassa
Julie Hall
David Hunter
Cathy Kettmann
Greg Kettmann

Amie Levasseur and I have just been honoured by Under Our Skin who nominated us as their Winter 2010 Angels!

Here is what they’ve written:

Angela Coulombe & Amie Levasseur, Maine (Winter 2010)
Angela (on left) and Amie became Lyme “buddies” in 2007. Angela was newly diagnosed with the disease and terrified; Amie had been battling severe symptoms since early 2006. The two were able to support one another via numerous telephone conversations while both battled muscular, neurological and the psychological impacts the of the disease. They vowed that when they got well they would provide this same kind of support to others. Lymebuddies was created in 2008 to provide a “buddy” that will understand, support, give hope, and help answer questions one may have when sick with Lyme disease. In October 2008, while Amie was 7+ months pregnant, she arranged a viewing of UNDER OUR SKIN in Poland, ME. Unfortunately, in the last month of the pregnancy Amie needed hospitalization; but the whole community turned out to show the film and support Amie. Amie’s indomitable spirit lead her to the show the film several times during her hospitalization in a room in the hospital where student nurses, nurses and doctors attended viewings. She has since organized several other community screenings, helping to broaden understanding of the disease in more communities throughout Maine. Lymebuddies constantly promotes the film as an indispensable resource which “validates our condition and the suffering we endure with Lyme.” Having both watched it–and cried over it–together and with their extended families, they feel its visual message hits home in ways the written word alone cannot. In November. Angela, aka Lymerunner, completed the NYC Marathon to raise awareness about the disease and to raise money in order for Lymebuddies to be able to purchase copies of UNDER OUR SKIN to donate to local libraries. “One of the things we are so grateful for about UNDER OUR SKIN is that it was one of the first examples we’ve had of large scale truth-telling about Lyme. Everyone feels like they have to keep quiet and keep it underground because we have to protect doctors and make sure we don’t lose our ability to be treated, and don’t come across as crazy- but finally someone had the guts to make some noise and show it in such a personal, visual, relatable way. We want to scream THANK YOU!!!” And we scream back: thank you, Angela and Amie!

Amie and I are very honoured indeed. We will continue to strive to raise awareness about this dreadful disease as it is so little understood and those with it need all the help we can give them.

Check out all the Under our Skin Angels here: http://www.underourskin.com/interact_meet.html

It is amazing how much information I found I needed in order to run my first marathon successfully (and by successfully I mean without injury, without mishaps, and just getting across the finish line.) I seemed to have a new question every day about how to do this. Before running the NYC Marathon Nov. 7, 2010, I considered myself a long-distance newbie. The longest race I had ever particiapted in was the 10K Beach to Beacon and I knew that longer races required a completely different game plan.

Early on in my training I was able to find Marathon Training Academy, an online wealth of information about all things marathon related. I cannot thank Angie and Trevor enough for all their support, information and guidance during my many months of training and I feel I completely took them with me for the duration of the marathon run and over the finish line. Later when they asked if I’d do an interview with them to perhaps inspire others and give them the firm belief that they too can run a marathon, I was only too happy to be able to do so. It is an honour and a privilege to have been interviewed and I do hope it will truly inspire others to realize their dream of running a marathon.

You can check out the full interview here: http://marathontrainingacademy.com/marathonsuccessstory

Amie Levasseur and I were interviewed by WCSH6’s Sharon Rose about Lymebuddies, www.lymebuddies.com and what it was like to participate in the NYC Marathon to raise awareness about Lyme Disease.

If you would like to run for Lyme Disease, share your Lyme Disease story or have a LymeBuddy, please feel free to contact either Amie or myself.

I’m a great believer in saying the words “Thank You”. With the American holiday of Thanksgiving just around the corner, I feel I have more than the average person to be thankful for. Getting through this journey we call life takes the support and help of everyone around you, most of the time you don’t get a chance to say thank you as the moment comes and goes too quickly to be acknowledged with words. However, when the opportunity to say thank you does present itself, I go for it whole heartedly – thus today’s entry, a colossal thank you to everyone who supported, encouraged, inspired and trained with me during my endeavor to run the New York City Marathon November 7, 2010.

Family Thanks

The first HUGE thank you has to go to my husband and my family! Back in February 2010, when the idea to run the NYC Marathon first cameto me, the first person I needed to get a reality check from was my husband. I asked him, “Do you think I can do this?” His answer was a resounding, “YES, yes you can!” From that moment onward, his support never waivered. Just weeks before the marathon I had to ask him again, “Do you really, really think I can do this?” and again, I received the same reassurance, “Yes you can!” Likewise, my two young sons never doubted for a moment their mother could run a marathon. They were both young when I was ill and I think, luckily, they don’t remember how ill I was. To them it was a phase, now I’m well and I run – pretty simple looking through the eyes of a child, which I sometimes needed to do during this time. Hoorah for them!

Next, I have to thank my sisters Annette and Tricia. They got on the bandwagon as soon as I told them about it. They supported me all throughout the summer and promised to travel to NYC to cheer me on. I couldn’t have asked for better cheerleaders!!! In fact, I saw them at mile 8 of the marathon route. It was like having rocket boosters given to me for the rest of the run. The lift I received from seeing them sustained me throughout the rest of the run. Pretty awesome support!

It took a while to win my mother over, but eventually she got behind the effort as did the rest of my family. The night before the run I received a call from my brother who gave me a tremendous pep-talk and boy did I replay his conversation with me from mile 11 onward! The rest of my large family also encouraged me every step of the way sending messages of support and following me during the run via the NYC mobile app. Thank you all so much!!

My Lymebuddies and the Online Lyme Community

If there was one person who got me back on my feet post Lyme it was Amie Levasseur, co founder of Lymebuddies and my life saver! I don’t know how many nights during the struggle with Lyme that Amie was there for me over the telephone convincing me that somehow we’d both get better (she too has Lyme Disease and was also very ill during the time I was). There is so much I could say about Amie that I’d have to write a whole blog just to cover some of it and still it wouldn’t cover it all. For the purposes of this blog, I’ll say a huge thank you for being there, for your kindness, generosity, courage & bravery, friendship, support and just all round for the gift of you (and your wonderful sister Laurie as well as you family!!)! Of course, I also am fortunate enough to have met several other Lyme advocates along the way. Jessica Plantanitis worked tiredlessly on fund raising events and media coverage whilst being the driving force behind Lyme Disease Awareness. Cris Johnson, aka Lymesexy was and continues to be one of my biggest advocates and supporters. He campaigned on my behalf to raise funds for and awareness about Lyme Disease using social media venues such as Twitter and Facebook, as well as attending several fundraising events armed with a donation bucket and a great speech! Then there are all of my Twitter and Facebook followers and friends. Without your daily messages of support this all would have been completely meaningless. You were my inspiration and my turn-to people when the going got tough (think walking pneumonia and tendonitis around mile 18 of my training program). Thank you also to MaineLyme for their ongoing support via Facebook and the many activities they have participated in and continue to organize to raise awareness about Lyme Disease.

Friends and Running Mates

I would not have been able to get into the NYC Marathon had it not been for the help of my dear friend Teresa. A New Yorker by birth, we met in London over 20 years ago. It was as apparent then as it remains today, Teresa has a love of helping others achieve their dreams and goals. She took on the task of arranging all the travel plans to the city including volunterring her nephew to put us up in his spacious house  (thanks to Georgie and Lisa for that too), as well as making sure I got to where I needed to be at all times. Thank you so much!! She also put on a Halloween fundraising event at her restaurant, The Seafood Center of Maine. If you have access to Facebook, check out these photos of the event http://www.facebook.com/home.php?- !/album.php?aid=260757&id=583159126&fbid=466363469126

I could not have run this at all without the help of my great friend Martha who eagerly signed up to run the marathon with me. She had just completed her first marathon, the Dublin Marathon, and was so enthusiastic to run NYC. She gave me the necessary bravery needed to run. Just knowing I’d have her there by my side on marathon day meant the world to me and honestly, I would not have gotten to the start of the marathon without her.

Likewise, our friends Joanna and Heather also got on board with becoming our support team. They assigned themselves the role of “beer wenches”, but of course, they were so much more. Having them in NYC with us, cheering us on and rooting for us was more than we could have wished for and is a true testament to long-term friendships!!! (We’ve known each other for over 30 years and recently reconnected.)

Then there were the friends who ran with me. Apart from one runner, no one who ran with me was training for a marathon. The dedication needed to run a marathon is one thing; eighteen weeks of waking up early to run, trying to avoid the heat in the summer and the cold and dark as autumn approaches, the naps needed after a long run! Who’d put themselves through that if they weren’t training for a marathon? Well, in my case Lisa, Tom, Chris, Brett, Joe, Kyle, all of whom ran lunchtimes with me in weather that ranged from 39F – 100F+.

And then there’s Karen and Lara who put themselves through even more on my behalf! You see, Karen had trained for and completed a marathon almost 20 years prior to my attempt and felt it just would not be right for me to run any of my long runs alone. Though she was not training for the NYC Marathon, she was right there beside me for all my long runs. Starting with my 8 mile run and going up to my 20 miler, she’d wake up on Saturdays at 5am to arrive at my house for either our 5:30am starts or 6am starts. She roped in Lara for our 15 mile run and Lara stuck with us right up through the 20 mile run and subsequent “I shouldn’t have eaten chocolate torte the night before my 12 mile run” adventure. (I won’t share the story here, but there is a story, of course!). I just cannot thank you all enough and honestly don’t think I could have done it without you all! There just aren’t words to describe my honest, sincere and heartfelt gratitude and if I can pay this forward to any of you, I’ve got your backs!

Who had the best illustrations? I did, and I owe that all to Katie Wall of www.wallop.com, a freelance artist, mother of three and fantastic mate, she dropped everything in her busy schedule to create a tick illustration for me in just three days so that I could use it at the start of May, Lyme Disease Awareness month. The Lymerunner brand owes it all to you!! Thank you so much.

New Friends - Marathon Training Academy

Of course running with marathon veterans is a great way to prepare for a marathon! But as a newbie, marathoner-in-training runner, I was loaded with questions that seemed to pop up hourly! Thirsting for knowledge about all things marathon lead me to the doorstep of the Marathon Training Academy, the online running community started by Angie and Trevor Spenser. Through their amazing series of podcasts, I learned so much about marathon running and training, and had the personal assistance, encouragement and support of Angie via email correspondence and Facebook entries. For ANYONE thinking of running a marathon and for those who have run one, I strongly recommend this website and podcasts to you! The wealth of knowledge I gained was immense, but I also came away with two new running buddies and for that I am also immensely grateful.

Media

I also would like to thank Sharon Rose of WCSH6 for the in-depth reporting on Lyme Disease and the controversy surrounding diagnosis and treatment of the disease. This four-part series really opened up the debate about the disease and brought conversation into the mainstream. She also helped Lymebuddies connect with many people who have the disease, bringing them help and support as they battle through the disease. It took courage for Sharon to tackle this subject and I can’t thank her enough for that!

I would also like to that Emma Bouthillette of the Portland Press Herald, Liz Gotthelf of the Biddeford Saco Journal Tribune, Gillian Graham of the Biddeford, Saco, OOB Courier, each covering my story and others with Lyme Disease in their respected papers,  and Erin Ovalle Good Day Maine, for doing a live interview about Lyme Disease.

Sponsorship

Special thanks goes out to every individual who contributed financially to Lymerunner/ Lymebuddies via the chipin widget on my website. Your contributions will go toward helping those with Lyme Disease who might not otherwise receive help so I cannot thank you enough! I would also like to thank Deanna for her personal sponsorship that made the whole trip possible.

The Seafood Center of Maine had one of the funnest fundraisers ever! Halloween would not be the same now without you! Brooks Running supplied all the clothing I wore for my marathon run. These local businesses also contributed to the effort: Diversified Business Communications, Biddeford Saco Savings Bank, Jimmy the Greeks and The Run of the Mill. Thank you all so much.

More thanks…

Thank you to everyone who attended the 4^th Annual Spotlight on Lyme Disease walk and all the fund raising events held in my honour!!! I can’t say how touched and moved I am by your generosity and support.

Life throws you many curve balls, but it’s how we hit back that determines where we’ll run to. Thank you all for helping me run to NYC and back.

Wow!!! I should be feeding my children right now, or doing laundry as I’m back home in Maine, but I’m still processing the whole weekend and the whole ING NYC Marathon experience. People told me I’d find it amazing, but it was so much more than that. I think my friend and Lymebuddies partner Amie Levasseur put it best when she wrote this about the experience:

“It was amazing and incredibly inspirational to see all the runners holding each other up, slowing down to help each other even though it would affect their own running times, blind runners, runners with prosthetic legs, etc. There are many parallels between the runners and what we have to go through with Lyme Disease each day and hopefully I will find the time in the coming days to write about what I was fortunate enough to witness. It certainly brings back ones faith in humanity and if any of you have the opportunity to go in the future it is a very uplifting experience.”

I need to thank so many people so I want to write a different blog about thanks, but for now, please enjoy a very brief runners prospective of the marathon experience.

ING NYC Marathon 2010, a Lymerunner diary from angela coulombe on Vimeo.

When I lived in Barcelona, Spain, my friend told me this: “Looking back at one’s life is a great way to learn from it, but the only way to live life is by looking forward to it”.

Three years ago when I was diagnosed with Lyme Disease, I was forced into one of the most difficult battles of my life. There are no words to describe the relentless pain Lyme wracks on the body. Sleepless nights deprive you of your ability to cope, your sanity and your will power. After 4 months of daily agony, I was ready to give up.  Trying to muster up the daily courage, strength and energy required to carry on seemed like an impossible task. Yet somehow I managed to find the energy to carry on. Little by little I started to make small improvements. They didn’t seem like much, but they had a cumulative affect on how I managed to get through the day.

After a year of Lyme ups and downs I wanted to get back on the thread mill and back on track with my life. The going wasn’t any easier. However,  the determination I found during the first year of battling Lyme stuck with me. My 45 minute mile slowly began to creep down to 35 minutes, then 20 minutes, then 15, finally back to the 7 minute mile I enjoyed prior to Lyme.

This Sunday, November 7, I’m taking on what I consider to be one of the biggest challenges of my life since battling Lyme Disease. I’ll be running the NYC Marathon, a whopping 26.2 miles that will test my physical as well as mental strength. When I look at the bigger picture, it looks like a daunting task. But when I think about where I was three years ago, it all seems possible.

I’m running for these reasons: 1. To raise awareness about Lyme Disease 2. To promote Lymebuddies, a service Amie Levasseur and I started to help others with Lyme disease, and 3. to give hope to others with Lyme that though the battle may be long and hard, they too may recover from this dreadful disease.

So this run goes out to everyone with Lyme Disease as well as those who are battling illnesses that have left them struggling to regain their health. Looking back, the journey to NYC seems like its been an impossible, uphill battle, but I’m looking foward to this run for all of you out there! Thanks for your continued support!

On a cold, blustery day on the bay, Back Bay, Portland Maine to be precise, the 4th Annual Spotlight on Lyme Disease Awareness was held. On Saturday, Oct. 23rd, 2010 walkers and runners from all over came together to raise awareness about Lyme Disease. Seeing so many people just touched my heart and I felt I came away from the experience knowing more about others who have Lyme, what they’ve been through, what they continue to go through, and certainly, with many, many more friends. Below is a photographic recap of the event. Thank you to Saco & Biddeford Savings Bank for sponsoring the event as well as Atlantic Pest Solutions.

Over the year people have been contacting Lymebuddies and Lymerunner with their stories of Lyme, and with information about groups they have started.

One person in particular has touched me with her unique way she handles her Lyme and expresses her everyday life with Lyme. Her name is Julie and she has been keeping an illustrative journal of her everyday experiences with Lyme. Her battle has been going on for many years and keeping this journal has a kind of art therapy for her. To the left is an example of her work (click to enlarge image), and you can check out more at http://lymejello.com

Also, two other resources that have come in this week:

http://www.lymeandback.blogspot.com &  http://www.LymeConnect.com

If you have a link you’d like listed please contact me at angela@angelacoulombe.com. Thanks.