Other Lyme Runners Stories

Posted by admin | Posted in Uncategorized | Posted on 15-09-2014-05-2008

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After being featured in the July 2014 issue of Runner’s World as a runner who has Lyme Disease, I’ve been contacted by many other “Lyme Runners” who’s stories I’d like to feature for several reasons yet mostly because there needs to be awareness about the disease and those who live with it. For me, when I trained for my first marathon post Lyme, in 2010, I only knew of two other runners who had Lyme; Perry Field, a professional athlete and Bart Yasso, another extremely talented and gifted runner. However,  both of these persons seemed to be out of my ordinary runner league and I really wanted to find someone like me, a non-professional runner who just enjoyed the sport. Seven years later, thanks to social media and other outlets, I’m meeting others who are like me; Lyme warriors who refuse to give up and who are pushing their bodies, finding health through running and exercise. In order to bring attention to this Lyme runner community, I now share their stories.

Eliot Rogers’ Story

Eliot RogersLemon or Lyme

To begin, I intend to pay homage to everyone suffering from this disease.  After reading Runner’s World article I personally consider myself truly blessed, reading other’s struggles with this insidious disease and the crippling effects it can carry. To anyone that asks I describe the effects that LD has on my body as the “Tin Man Syndrome”, suffering from chronic pain and extreme joint stiffness. For us runner’s this makes our way of life more complicated, but not impossible to carry on. To cope, I personally incorporate an almost religious recovery regimen.  Mornings have been my worst, waking up completely rigid and stiff, so my solution has to begin each day with a rigorous calisthenics session, followed by a run. The soreness and stiffness seem to leave when I start stretching and moving, the so called “oil” to the joints.

Eliot RogersGrowing up I was very much into athletics, everything except running. During high school I was a member of the football, golf, basketball, and tennis teams. Running became a later post high school hobby.  My actual experience contracting the disease and the believed diagnosis  was very deceiving. The story is still fresh in my mind, at the time I was in an inpatient rehab facility recovering from opiate addiction, a nice summer day out and our group decided to have an outdoor therapy session. I remember finding the tick on the backside of my knee, pulling it off and making no big deal of it. Growing up in a smaller, spot on the map town in rural WV, I’ve grown accustomed to them. Pulling/burning them off myself and k9’s on numerous occasions. No big deal right, or so I thought, the symptoms occurred within a few days after the bite. Hot/cold chills, fever, general weakness, general flu like symptoms. The deceiving part is that opiate withdraw symptoms and Lyme disease symptoms nearly mimic one another, a pair of twins that are hard to tell apart. My impression was the opiate withdraw was causing these symptoms. It wasn’t until a month or so after the initial tick bite that the classic red bulls eyes circles developed. At first one, then another, until my entire body was littered with them. It was a scary thing, finding 10+ red crop circles scattered over my body, believing God was punishing me for taking Craig’s lunch money in the 3rd grade.  Fortunately this indicator brought forth the real culprit, I was given a 3 week course of antibiotics, and that was the song and dance.

Now you can say I chase a different high with running, I’ve been running consistently for the past 3-4 years. Gradually working up my mileage, from 5K’s to ½ marathons. The training for my first ½ marathon was very cautious and I focused much on the recovery aspect of it while also gradually increasing mileage, and at the same time not over doing it. The months preceding the race my biggest expenses were icy hot patchs/gels and Epson salts. Every chance that presented itself I would do something beneficial to my recovery. Icing my feet while at work, stretch while waiting on the trolley, heck I’d be at the bar massaging my calves.  My training ended up paying off; I completed Pittsburgh’s Half Marathon 5 mins under PR. My mantra for the last bit was a piece of a poem from Rudyard Kipling’s “If”, and so hold on when there is nothing in you

Except the Will which says to them: ‘Hold on!’

Thank you all for your time and reading my running with LD story.

T.S.E.Rogers

 

Runner’s World Magazine take on the issue of Lyme Disease

Posted by admin | Posted in Uncategorized | Posted on 01-08-2014-05-2008

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Angela Coulombe, aka Lymerunner, in Runner's World Magazine, July 2014Back in February of this year (2014) I was surprised to discover an email from Gretchen Voss, a writer for Runner’s World Magazine, in my inbox. She was working on a piece for RW magazine about runners who have Lyme Disease and she wondered if I would mind being interviewed for the article. Since becoming ill with the disease in 2007, and having my health decline to the extent that after 3 months with the disease I was left a near invalid, I’ve made it my mission to do what I can to raise awareness about the disease.

The road to “recovery” has been a long and bumpy road. But I feel that I am more fortunate than most with Lyme and therefore, feel the extra burden of raising awareness about the disease knowing so many who cannot function let alone lead this charge. It is for them I do what I do and for those out there who DON’T have the disease so that they may never get it, never experience how debilitating it can be, how devastating it can be.  Raising awareness about the disease is the key to preventing it and fighting for those who have yet found treatment that will restore their health.

When you’ve reached a point in your life where you think dying is preferable to carrying on in excruciating pain, you know what it is like to have Lyme. I was there seven years ago and I am fortunate and blessed that I recovered to the extent that I can now run marathons. Yet I realize that there are so many out there who are not as fortunate as myself , and I run for them, I advocate for them, I raise awareness for them (together with Amie Levasseur started Lymebuddies – www.lymebuddies.com, organize the Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness and the autumn music festival, Lyme-Aid – well, really Amie does all the work on this one, I just enjoy the great music she puts on!). I cannot thank Runner’s World enough for publishing this article. The day it came out there was so much conversation about it on social media sites that I knew the article achieved it’s purpose and I was only too happy to be a part of it.

However those of us with Lyme chose to raise awareness; local, grass-roots, via media outlets such as TV, magazines, YouTube, or even by running marathons with the disease,  I believe we all share the common goal of preventing others from becoming ill and keeping Lyme in the forefront of peoples minds so that slowly, over time, Lyme will receive the recognition it deserves as being one of the most prevalent and debilitating diseases world wide. Again, can’t thank Runner’s World enough to reaching out to me and sharing my Lyme journey with their readers and beyond.

The full article can be found here: http://www.runnersworld.com/health/runners-and-lyme-disease

The Boston Marathon 2014

Posted by admin | Posted in Uncategorized | Posted on 04-05-2014-05-2008

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I don’t know that I ever fully understood or appreciated the term, “closure” in regards to having to find a solution to or obtaining peace of mind from, until running the 2014 Boston Marathon. I also will never really understand how fate works, how you can end up in any place at any time and encounter incredible sets of circumstances that can irrevocably transform your life in an instance. One such occurrence would be the moment I was bit by an infected deer tick that carried Lyme disease, Babesia and Bartonella, changing my life in ways that I could never have anticipated. A second occurrence while  battling Lyme disease, making a conscientious decision to  run a marathon that would qualify me to run the Boston Marathon.
(View video highlights of the journey to the finish line of the 2014 Boston Marathon below).

Boston Marathon 2014 from angela coulombe on Vimeo.

Qualifying to run the Boston Marathon

I have, in the past referred to the Boston Marathon as the “Mecca” of all marathons. There are two ways to enter into it; qualify to run it via running a fast enough marathon to qualify for your age group, or, run for a charity. That’s it. No lottery, no ballot. So, in my humble opinion, this makes Boston quite possibly the hardest marathon to gain entry into.

Lyme Disease and my Boston Dream

In 2007 I  was struck down with Lyme disease. I went from being a very active mum and okay athlete to becoming a near invalid in the course of only 3 months. I have rebuked myself over the years for not knowing anything about Lyme until it happened to me. How could I live in a place where it is endemic and yet not know anything about it?  But that aside, when I was at the point where I couldn’t walk let alone run, and yet I was refused any care beyond the CDC recommended 3 weeks of doxycycline,  I vowed I would do something “incredible” to help others with Lyme disease gain the hope I so badly needed AND at the same time, raise awareness about the disease. The only thing that I could think of at the time that would have that much impact was to train for and run a marathon that would qualify me for Boston… the only problem was that I had never run a marathon before. In fact, the furthest I had ever run prior to Lyme was a 10K.

The Marathon Bug and the Running Philosophy

Well, Boston wasn’t exactly the first marathon I thought about. The first marathon was the NYC marathon which I trained for and ran in 2010. My goal at the time was just to live through it. I knew so little about running long distances, I thought that marathon running meant risking your life via the exertion of every milie of  the run. But, of course, once I had completed it, I was hooked; all I wanted to do was run more, and THEN I wanted to qualify for Boston. The thing I’ve noticed about runners and the running community is how supportive they are of all folks. Runners run for all sorts of reasons; personal and esoteric, to helping others out. The camaraderie runners show others is second to none. So, yes, when I ran the Hartford Marathon in 2012 to qualify for the 2014 Boston marathon and was successful, I knew that what I had to do was to give back to the community; I had to volunteer to help out those who would be participating in the 2013 marathon before I took from the race in 2014.

Volunteering at the Finish Line of the Boston Marathon in 2013

I don’t think there is any greater experience you can have as a runner than helping out other runners achieve their personal goals and being there to support them along the way. So many runners helped me over come Lyme disease. So many helped me go from a 45 minute mile to a 6:50 min mile. Without them, I might have given up, but there was always someone there to help me out along the way. It was my turn to give back. It was with that spirit in mind that 6 of us all volunteered and were positioned at the finish line in Sector 6, for the 2013 Boston Marathon. The day was perfect; the weather was grand, spirits were high, the crowds were wonderful and runners were finishing to cheering crowds and volunteers who wanted to share in their accomplishment! At 2:49 the unthinkable happened; 2 bombs went off shattering the spirit of the day and creating fear and chaos in a once tranquil and triumphant atmosphere. Being caught up in the ensuing moments thereafter were moments where I experienced fear such as the likes I’ve never known, yet I also witnessed the most incredible acts of bravery, courage and compassion. However, I was faced with a dilemma I could have never anticipated before that very moment: would I want to ever run a marathon again and would I want to run Boston in particular?

Resolve and Strength

I cannot  imagine what it was like to be the victim of a senseless act of violence. I cannot imagine what it is like to lose a loved on to such an act In the weeks following the 2013 Boston Marathon bombings, I felt nothing at all except a sadness I could not control, life seemed meaningless and empty and I had a hard time just functioning. I guess you could call it post traumatic stress disorder. Life seemed surreal, my job meant nothing to me, and all I really wanted to do was hold my children, cuddle and hug them and my husband, reach out to my family and friends and tell them how much I loved them. But thankfully the BAA was there to help and for the families involved in the tragedy, the One Fund was started up, the city of Boston and the world rallied behind them, and purpose once again came back into my life. Strength from the running community and all communities poured into not only Boston, but any community that needed a lift. Running the Boston Marathon in 2014 became something more important to me than I had ever imagined it could or would be. It would become my tool for healing yet again, this time, not from physical wounds, but from mental scaring. I would run with the city of Boston, I would be Boston Strong, I would be Lyme Strong, I would find closure not only for me but for the families affected by the bombings. I would survive and give courage, hope and inspiration to others.

 Marathon Day 2014

On Marathon day I returned to the city of Boston ready to be a part of a celebration of love over fear, of courage over cowardice, of determination and resolve. I was ready to give back to the community who gave so much to me in my battle to beat Lyme disease. I was ready to be a part of a movement that would not be hindered, harassed, intimidated, stopped. I ran with the memory of the victims of the 2013 bombings in my heart, I ran with those I know who have Lyme disease and have not recovered like  I have, in my soul. I ran strong and proud and determined. I ran #Bostonstrong and #Lymestrong and was truly humbled to be a part of a day of healing that did bring closure to my year and I hope brought closure of sorts to others who were impacted by the events at the 2013 Boston Marathon.

Please view the video of the day as posted above. If you were there both in 2013 or 2104 or both, I’d love to hear from you! Drop me a note and let me  know your thoughts on the day.

 

Chicago Marathon 2013

Posted by admin | Posted in Uncategorized | Posted on 31-10-2013-05-2008

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In October 2012 my friend and running buddy Martha Hall ran the Chicago Marathon. It was such a great event for her, she asked me if I would like to run it with her in 2013. What an honour to be asked to participate in one of the five biggest marathons in the world by a friend who considered me worthy of accompanying her on such an adventure.

Right now I have to explain that Martha and I have known each other over 30 years. Though we lost touch after school, our lives have had parallel experiences. Via the gift of social media, we were able to reconnect with each other back in 2009 as I was recovering from the worst thing that has ever happened to me in my life; Lyme disease. When I hatched my plan to run the New York City Marathon, Martha was immediately on board. As a marathon veteran, she convinced me that I could run a marathon, though I had so many doubts. Having Martha run my first marathon with me was one of the most special gifts life has given me, my loving and supportive family being the best gift ever, and amazing friends another. I owe my whole marathon tutelage to Martha, the good folks at Marathon Training Academy (Angie and Trevor Spencer), and of course, my running posse, AKA, the Real Runners of New England.

So, yes, I was delighted at the prospect of running the Chicago Marathon with Martha and experiencing this incredible event as well as visiting a city with magnificent beauty and incredibly friendly people. And so, with my running posse, training began at the end of June 2013.

As any runner will tell you, training comes with it’s ups and downs, sacrifices and rewards. This was the 4th marathon I trained for (I’ve run 3, had to pull out of the 4th due to injury). Feeling my fittest in the years since Lyme disease wracked havoc with my body, I decided that I should train at a level that I felt would push me a bit. I added a bit more speed workouts and cross training workouts to my weekly routine. It was all going so well. Sixteen weeks of training seemed to fly by. Then came the taper. I’m not sure exactly what happened, but I guess it’s called “taper psychosis” and I had it big time. All of the sudden, I felt as if many of my Lyme symptoms were returning; joint aches, upper shoulder and back pain, sore feet and headaches. Doubt consumed me for the first time; would I be able to actually run at all on marathon day? The two week taper dragged on, and though I ran short distances during that time, I struggled to find my groove. I started to wonder if the goal I had set myself at the beginning of my training would be achievable.

Arriving in Chicago, we headed to the expo to pick up our bibs and acquaint ourselves with the information necessary for a successful run. I was fortunate enough to qualify to be in the first wave, starting in corral C. My goal was to run a 3:35 marathon and as such I decided for the first time to try running with a pace group.

Marathon morning arrived. With the usual dose of nerves, what I like to call “jelly belly”, and dressed in my signature Brooks Running attire (lyme green nighttime mesh hat, lyme green Epiphany short sleeved top, Infiniti shorts, low cut Brooks versatile low-cut socks and my lyme green Adrenaline GTS13) I headed out for the short walk from my hotel to my corral. The one thing I forgot was the closing time for my corral. Arriving at 7:15, I forgot my corral closed at 7:20am for a 7:30am start. As it turned out, I made it into my corral with one minute to spare and no chance of lining up with my 3:35 pace group. I was on my own. However, this is what my training prepared me for. You see, all throughout my training, though I did run with a group of other women and men, they were all much faster runners than myself. On my long runs, I’d start off with the group, but after about 10-13 miles, would have to fall back and run the remaining distance by myself. I felt prepared for the challenge of taking on the marathon alone, relying on my Garmin as I had done on so many other runs.

In a big marathon like Chicago, you forget what it will be like to run with so many people. You forget that it may take several miles to find your space to run your race. However, by mile 8 I was able to do this quite comfortably. I have to say as well that the race support at Chicago was phenomenal!!! The supply of fluids and fuels all along the route was amazing. The volunteers were friendly and helpful and the crowds were wonderful. Running in such a supportive atmosphere made the run go by quickly. The course was great as well with may turns so as not to get bored running in complete straight lines. I reached mile 13 at 1:47, as I had done in so many training runs. Miles 13-20 seemed to fly by. At mile 20, like most runners, I was starting to feel fatigued, but I knew I had enough left in the tank to finish. At mile 21 I saw some friends of mine who live in Chicago; what a tonic to see friendly faces cheering you on. From miles 23-26.2, I had to dig deep. I started to really feel leg fatigue, though my breathing remained easy and calm. I finished at 3:42:46, and though I did not meet my goal of 3:35, I had a good, strong race that didn’t leave me too fatigued. The best part of the whole run, though, was that for the very first time in my marathon history, I did not have blistered feet!!! That, and during the run, none of my Lyme symptoms occurred and so far, so good. I’m back to cycling, lifting weights and doing shorter runs and feeling great. Who could ask for more?

Below is a video recap of the marathon experience filmed on my iPhone spliced with photos also taken from my iPhone. Enjoy viewing!

Chicago Marathon 2013 from angela coulombe on Vimeo.

The Evolution of a Runner – having the balls to finally look the part

Posted by admin | Posted in Uncategorized | Posted on 07-10-2013-05-2008

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A few years ago, when I first started “running” (after a long struggle with Lyme disease), a friend came to cheer me on at a race. His comments were, “You don’t wear anything to run in that distinguishes you from other runners. I couldn’t spot you in the race. You’re going to have to wear something brighter next time so I can see you.”

I find this funny now, but when I first started running, I didn’t want to look like “a runner”. I didn’t want anyone to think I could run or had any ability in the running stakes. If I could have run in just pajamas, I would have done so, but feared that too might draw attention to me. Instead, I opted for a pair of long black trousers I’d worn through my last birth (call them maternity trousers, but they did a great job doubling as dance slacks and running trousers), a natty t-shirt and cross trainers. I figured with this look, no one would recognize me as a runner (I just looked like a weirdo instead). This strategy worked well, in fact, too well. You see, what I’ve learned via experience is that it’s really not a good idea to wear long black trousers in 90F weather to run 6 miles at noon. I know, trust me; it’s not a good idea.

Typically during summers in Maine the temps can range from 70-100F, but rarely do they reach over 80F for prolonged periods of time. It does get super humid, though, making long runs unpleasant unless you’re well ventilated and in the right clothing. On one lunch-time run I discovered this first-hand. I’d headed out in my chosen garb; the long black trousers, the t-shirt, the cross trainers, to run 6 miles around Back Cove, a pleasant loop around a body of water in Portland, and back to the office where I work. It was in the 90s, it was humid and there was very little breeze. I had no discomfort until the last mile. At that stage, my trousers were wet with sweat; in fact, I was soaked from my head to my toes in sweat. I had to stop, but when I stopped, my hands started swelling up. I had no idea what was happening. I thought I was experiencing the first signs of a heart attack or something more sinister. I was afraid and I could only think of getting out of the sun and getting some water. I made my way up the street looking for any establishment that might be open that could help me. I convinced myself I was dying, holding on to hot brick walls for balance, as I made my way up the street.

The first establishment I came to was an employment center. Confident I’d found help, I opened the door and approached the reception desk, asking if I could have some water. I was shocked when the reply was, “We don’t have any water.” Again, thinking I was dying, with full-on panic in my voice I asked, “Is it okay if I just sit in that chair over there with my head between my legs so I don’t pass out. I think I’m having a heart attack, I’ve just run all of Back Cove and I think I’m over heated and my hands are swelling and I think I’m having a heart attack.” That got a reply. The man behind the counter jumped into action, not only offering me water, but offering to call anyone I might need to contact so they could come help me before I died in the job center. I told him I was supposed to be at a meeting at my office in less than 15 minutes, so if he could phone my office, let them know I was somewhat detained and that I’d be there as soon as I felt it was safe to walk without passing out, I’d be there.

When I’d recovered sufficiently to leave the employment center and walk back to work, I caught a glimpse of myself in a shop window. I looked terrible. I looked worse than terrible. I looked freakish and bloated and red all over. Okay, that was no excuse for someone making a snap judgment to let me die before I explained my appearance, but still, it got me thinking. Why was I wearing clothes that were dragging me down and now, potentially, life-threatening? It was a turning point.

lymerunner-224x300When you’ve gone all non-running clothes, transitioning into what I would refer to as proper running clothes, (you know, wicked tops, shorts with built in undies, being fitted for proper running shoes, etc), can be very intimidating. It can really move you out of your mental comfort zone, though, as I’ve discovered, move you into a physical comfort zone. Making the transition from heavy cotton to Lycra can be very, well, disturbing, if you’re at all body conscious, and let’s face it, almost every women I know is just a bit (especially me!!). And with so many brands of clothing out there, how do you choose one brand over the other?

I guess my answer was made for me when I got fitted for my first pair or proper running shoes; a pair of purple Brooks Ravinas that I fell instantly in love with!! The rest of my relationship with Brooks Running is history. When I ran the New York City Marathon in 2010, I wore Brooks tops, capris and shoes (picture left). I also ran for all of those battling Lyme disease under “Lymerunner” a persona I have taken on since.

brooksgearSince becoming the Lymerunner, it seems only right that I should start to wear more Lyme green (pictured right). I can’t be happier with Brooks. The clothes are light weight when needed, warm when needed, they fit me just right and I love their comfort. Brooks service is second to none. Ordering online is a breeze, delivery is efficient and nothing pleases me more than receiving my goods a week later, knowing I’ve got top quality gear to wear on my next run.

TrifortheCure1NationTri1I guess in a way Brooks has made it much easier for me to now not only look like a “runner”, but to perform like one. Over the years, wearing Brooks gear, I’ve been able to achieve new PRs and even qualify for the Boston Marathon, which I’ll be running in 2014 (picture left: 2013 Tri for A Cure with Joanna Connor and Annette Coulombe, picture right: The Nation Tri, PR of 45:00 for a 10K in 91F heat).

JoanBennoitI’m looking forward to continuing to wear the Brooks brand as I work on improving my running, setting new goals and achieving new heights (picture left with Joan Benoit Samuelson August 2013). I’ll continue to support my Lyme buddies by wearing my Lyme green tops, and just in time for winter training, I’ve purchased my new favourite piece of Brooks gear, a new Lyme green, rain proof, wind proof, glow in the dark winter training jacket. Bring on Boston and don’t ever say you can’t spot me in a crowd of runners!!!

brookscoatSo that’s my evolution. Thank you Brooks Running for bringing it about!!! (picture right, my new winter running coat, bought especially for those morning winter training runs in preparation for the Boston marathon 2014). If only all evolutions could be so simple and effective!

Lymeriot’s (aka Valerie Brightbill’s) battle with Lyme Disease & Making a Dream Come True

Posted by admin | Posted in Uncategorized | Posted on 02-07-2013-05-2008

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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.

Val Brightbill, aka LymeRiot and Stephanie Vostry at Jimmy the Greeks, South Portland.

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.

Val Brightbill, aka LymeRiot and Angela Coulombe, aka Lymerunner, with the Lymebuddies signage at the Maine Mall.

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.

Val Brightbill, aka LymeRiot, Angela Coulombe, aka Lymerunner and Allyn Genest at the 2nd Annual Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness

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!!

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

Jimmy the Greeks Frozen 4 Miler Jan. 20, 2013

Posted by admin | Posted in Uncategorized | Posted on 23-01-2013-05-2008

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For the past few years a group of great friends and I have been running the Jimmy the Greeks Frozen 4 Miler. It’s what I consider to be the start of my new running year. (Pictured left, l-r, top row: me, Angela, aka Lymerunner, miscellaneous moose, Sam K, Joanna C, bottom row: Pat C, Melissa R, Jessica D and Lara F) The thing that sets this race apart from others is the fact that it is 1. a relatively new race, just having it’s 5th anniversary this year 2. its local to me, literally just down the road from where I live 3. it gives me enough time to prepare for my new year of running and 5. Jimmy Albert, the owner of the restaurant that puts on the race, donates all profits to support a fantastic local cause while hosting one of the best after parties of any race I’ve ever participated in (providing a free pizza buffet for all runners and very inexpensive beer!).

For me, though, this year was different for several reasons. After having what I considered to be a very good year of running last year, and as a devoted fan of Brooks (motto, Run Happy), I decided to apply for the Brooks ID (Inspire Daily) program. Brooks were with me every step of my New York City Marathon back in 2010 and they are a brand I have trusted and admired since. Their philosophy fits right in with my approach to running; it’s not so much about competing as it is about camaraderie and inspiring everyone you encounter to give it their best shot. After all, that is what makes one a happy runner. I was fortunate enough to be accepted into the program and started to prepare for this race back in Dec. 2012. Then, what some, including myself, would consider disaster struck; I fell prey to a nasty bout of Plantar Fasciitis under my left heel and had to stop running altogether. How does one inspire others to run when they can’t run themselves?

As I mentioned in the first sentence of this post, great friends and I run this together. (Pictured left, l-r, top row: Lisa L, Tom, me – Angela, aka Lymerunner, Sam K  bottom row: Pat C, Melissa R, Jessica D, Joanna C and Lara F) What I didn’t mention is that these friends come from out of state just to be here, so it’s quite a big deal to us and we take our preparations for the race seriously. How was I going to tell them that I couldn’t actually run?

But here is one thing that Lyme Disease has taught me: just because I can’t do one thing doesn’t mean I have to sit on the sidelines.

In fact, this has become my mantra! So I started to think, could I walk it and if so, could I inspire others who might be newbies to running or others who would also be walking? I was quite sure I could! So a new goal was set; to walk the whole route, to cheer on everyone I encountered, to give encouragement to anyone I passed, to support everyone who turned out and to do my best to finish in under an hour.

All along the route my friend Joanna, who walked beside me step for step, and I cheered on those we passed, encouraged them to keep going, walking along side them at times, motivating  them, and in the end, this turned out to be one of my best events ever! I loved every minute of it and loved being able to make new friends along the way. And the best thing, two of my friends who had already finished came out to see me in, giant thanks to Lara and Allyn!!!! Now I know if I cannot run an event how much fun it can be to walk and cheer!  (Pictured left: me, Allyn G, Lara F and Joanna C)

Never stop believing, and happy running (or walking !!!).