The Big Five for Lyme – A dream of recovery and hope

Have you ever had a dream of doing something so spectacular to help others, yet you were at a stage in life where you could barely help yourself? I had such a dream during one of the hardest, most physically painful and most depressing, isolated times in my life. Back in 2007, I got bit by a tick carrying Lyme Disease, and from that moment onward, my life would never be the same again.

Yeeeeeppppp, in 2007 I went from running 10Ks to barely being able to walk, all in the course of three months. I wasn’t really an ambitious runner or athlete, I just enjoyed running and keeping active. I had two small boys, one that was three years old and the other eight, and they kept me plenty busy with soccer, baseball, t-ball, basketball and taekwondo. My boys were my life, and along with my family. my focal point. I loved getting home from work and chasing the boys around the yard and playing soccer/ baseball with them in the field next door while my husband, a far better cook than I’ll ever be, made dinner. In August of 2007, as part of my taekwondo conditioning, a sport I was doing with my eldest son, I decided to run the Beach to Beacon, a challenging, internationally recognized, 10k race started by Olympian marathon gold medalist, Joan Benoit.Samuelson.  I trained for the 10K in a way I thought was sensible and just had fun on the day. When my right knee started to swell up 3 days after finishing the race in mid August 2007, I thought I had aggravated an old running injury I had sustained 20 years earlier, and thought with some time off and some PT, all would be well again soon. I had no idea of what lay ahead.

It’s Lyme Disease – Hallelujah (or so I thought at the time)

After a couple of months of PT, the swelling in my leg was not going down. The PT asked me, “Are you sure you’re doing all the exercises at home?” to which I replied, “No one wants to get the painful swelling issue to go away more than I do. But I have a question, could the rest of my body be compensating for this because I’m starting to get real bad joint aches all over and muscle aches all over.” The PT replied she thought it was unlikely that my injury cause so much discomfort in other parts of my body. And then, joy of joy, the migraines started as well as the nausea and overwhelming fatigue, like the kind you experience in your first trimester of pregnancy. It was all I could do to make it through the work day and look after my young boys. I started to share their bedtime of 7:30pm, and had extreme difficulty getting out of bed the in the mornings to get them ready for school and myself for work. It wasn’t until October, 3 months after the onset of Lyme symptoms, that a bulls-eye rash appeared on my upper left shoulder along with a couple other small bulls-eye rashes on my right arm. My mother, who had been coming over in the mornings to help me get the boys ready for their day,  took one look and said, “I think you have Lyme Disease.” Having moved to the US from England, I knew nothing about Lyme Disease. My mother suggested I contact my PCP straight away to get a diagnosis. I was lucky to get in with my PCP that day and she referred me to an Infectious Disease doctor who made a positive Lyme diagnosis. “Hallelujah!!!”, I rejoiced! “Now I can start treatment, get better in a few weeks, and get back to a pain-free, nausea-free life.” Seriously, if I only knew then what I know now I would have dropped the f-bomb multiple times instead of rejoicing.

“We all have aches and pains – what you’re suffering from has nothing to do with Lyme, it’s old age and arthritis.” – quote from ID after 3 weeks of doxycycline left me even more ill than before.

I left the ID’s office with a prescription for three weeks of doxycycline and the assurance that in three weeks time I’d be fine. Man, I COULD NOT WAIT to feel well again. Three months of declining health, sickness and fatigue were starting to take their toll and I could not wait to just feel good again, to be able to play again, to have stamina, to eat a normal dinner without being ill. Yet day after day, week after week, until the three week period was up, I continued to become sicker and sicker. I was thinking, “WTF? Now I can’t turn my head, raise my arms for more than a few minutes without them going numb, raise my legs to climb stairs, I can’t dress myself, get in and out of bed without my husband helping me, can’t roll over in bed without waking my husband to help me. What is going on?” So I phoned my PCP to ask her what she thought and she told me I’d needed to phone the ID back. I was thinking, “well, maybe I need more antibiotics, maybe three weeks wasn’t enough. Maybe this is the eye of the storm passing and I just need to make it through to the other side”, and so yeah, I phoned the ID back. I was NOT prepared for what I would hear next. While lying on a couch, unable to get up, using my mobile phone, I explained that I was still ill, describing all my new and worsening symptoms and was told, “We all have aches and pains.” (How I wish I had had the presence of mind to record the conversation, but hey, I wasn’t expecting that answer, so why would I think to record the conversation.) The ID NEVER had me back in for reexamination, reevaluation, retesting, nothing! I was blown off over the phone as being some kind of person who just couldn’t deal with, what, pain, illness, sickness??? (oh, and as he was a man, I’m pretty sure he never had a home birth, let alone two, like I did, OUT OF CHOICE, I’m really no stranger to pain.)

A Dream is Born – I will get well and I will help others overcome Lyme

So now we’re in November 2007 and I am really, really sick. I have no doctor to treat me, no answers, and my health ls slipping down a rabbit hole faster than a greased bobsled. And I’m scared. I’m really scared. I’m in pain 24/7 to the extent that I’m starting to fear how I’m going to be able to carry on until I find a cure. Aleve isn’t helping, Advil doesn’t touch the pain. Living right now means living minute from minute because I just don’t know how I’m going to make it through if I look further than that. There comes a day when I just want to give up, I’m okay if I die, in fact, dying might be for the best. I’m just not sure how long I can live in so much pain without any hope or treatment. I have to thank my wonderful husband, family and friends for all the help and support they gave me to hang in there. I met another woman with Lyme, Amie Levasseur, who became my Lyme buddy. And eventually, I found a Lyme-literate doctor to treat me. It took two years of treatment and a lot of phone conversations with Amie to get to a place where I had recovered enough and really wanted to help others NEVER get to where I had been during the darkest days of the disease. And oddly enough, the only thing I could think of doing was to recover to the extent where I could run again, and even push myself above and beyond what I had ever done before. I was going to train to run a marathon and represent others with Lyme who needed answers and hope.

The New York City Marathon, November 2010

After two years of not being able to walk properly, let alone run, I felt 85% better and I decided it was time to try to run. My first post-Lyme mile took 45 minutes to complete; 45 minutes of starting, stopping, screaming, nose blowing, laughing, sitting, crying and starting again… but the next day I didn’t feel any worse, so I decided to keep trying until I did feel worse. I’m so happy that day never came. Over the course of 2009, I worked to get that mile time down and when I got it back to 7 minutes, it was time to add mileage. And once it was time to add mileage, it was time to work towards my marathon goal. Now, if you’re me, and you’re going to do something, you want to do it as big as you can. And what is bigger than the NYC marathon? Being a novice, I set the bar for completing the marathon at “just living through it.” And with the bar set so low, I was really surprised when I managed to finish in a respectable 4:12:58, and did I also mention that the endorphin’s got me hooked? I couldn’t wait to run another one.  A friend who was impressed with my time suggested that I might try to run a marathon that would qualify me for the Mecca of all marathons, the Boston Marathon,  and I couldn’t think of a better way to give the (British) two-finger salute to Lyme. And if I could run Boston, why not Chicago, and then, why not complete what was at that time the five major world marathons: NYC, Boston, Chicago, London and Berlin (Tokyo was added in 2013 as a WMMarathon, 3 years after I started on my quest).

The Feeling you Get When you Qualify to Run the Boston Marathon

I think for any runner getting your BA qualifying time is an achievement that just leaves you overjoyed, emotional, speechless. It affirms all the work and passion you’ve put into achieving the goal. Now, imagine if you’ve overcome great hardship or illness to reach that goal. Imagine if you thought you were going to throw in the towel on life just three years prior. There’s more to my Boston Marathon story, like how I was volunteering with my friends at the finish line in 2013, the year before we ran it, because we wanted to give to the race and runners before it was our turn to run. Yes, we were caught up in the bombings, but again, life can and will throw what it can at you, you just find a way to overcome, or carry on trying as best you can, right?

The Dream Today – The Berlin Marathon 2016 & Raising Money for ILADS

So, having run NYC in 2010, Chicago in 2013, Boston in 2014, London in 2015, I am honoured to represent my Lymebuddies and Lymies around the world at the Berlin Marathon. I’m also honoured to work with ILADS to raise money for their Physician Training Program, to help educate future doctors to recognize, diagnosis, and treat Lyme Disease. In the new year, I’ll be transitioning over to The Big Five for Lyme so I can concentrate on raising money for this program. No one deserves to live in pain 24/7 without answers, treatment and hope!  Watch this space for upcoming news and thanks for the support over the years. My one last dream and goal will be to find a cure for Lyme within my lifetime.


Because People Notice – Homage to Karen Fortier

As part of our training for the Beach to Beacon 10k, my running buddy Karen Fortier and I had the great honor to run with the race founder and one of our running heroes – Joan Benoit Samuelson. We met up at Back Cove in Portland, Maine, to run the 5K distance...

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