Thursday, October 4, 2018

Finding Purpose in our Greatest Weakness


I received a copy of my book today.  It seems surreal that It has been well over 5 years since I was bitten by a tick and two and a half since I have been treating it.  It seems even more surreal that somewhere in that recovery I wrote about my story, I feel like I can't really recall how or when that happened.

As much as I wanted the book to share the misunderstanding and misinformation about Lyme so that others could protect themselves...It is much more about the lessons I learned about myself and life that are often right in front of us.  We rarely can see them through the crazy, hectic experiences of daily life.  If there is a blessing in all of the loss you experience with Lyme; physical and mental abilities, job, money, often housing and friends and family, it is the ability to see yourself and what life is about much clearer than you ever possibly could before.  I wanted to share those revelations and moments of clarity so that maybe they will help others live a better life too.

But, when the book arrived and I opened it up it became clear, the fact that this book was written at all, was a much greater lesson than anything in the book.  The reason being, I am probably one of the last people who should write a book. I almost failed grade 9 &10 English. I was told I just couldn't write, it wasn't in me and they had tried to help but didn't know how.  I was just not going to be good at writing and I had to accept that.

Thankfully, it didn't end there because of an English teacher who not only restored my faith in me, he taught me a very valuable lesson about life.  He explained that I seemed to have given up before I had tried.  But the truth is I simply believed what everyone was saying about me.  He taught me some fundamentals about essay writing in a way that finally made sense to me.  He gave me tips on how to organize my thoughts, provide more detail, explanation, and context to what I was trying to explain.  But more than all of that he gave me the ability to believe in myself. It would take extra effort and work to write what might come much more naturally to someone else, but I could still do it.  I would never become an English major that was for sure, but I still had something to share and there was value in it.

I am so grateful for that experience in my life because the fact that it was harder for me, helped me to gain the tools that would help me record my story when I was very, very sick.   And the fact that I believed my story was worth something, made sure that I didn't lock it up inside.  It helped me heal, I hope it helps other thrive and most of all I hope it teaches people to believe in themselves, even when everyone else may suggest otherwise.

It also made me realize that maybe our purpose is found in our struggles. Maybe the experiences that seem to tear us down, show our weaknesses or strive to make us feel worthless are the very places we should look to find our purpose.  Maybe, just maybe when we have the hardest time and feel the worst is exactly what we are meant to overcome and share.  Maybe our greatest strength is not what we do best but what has been the hardest and we persevered.  Maybe that's what we each have to offer the world...our very worst.  Because if we overcome that we find our very best. And what if our ability to share our worst shows someone else that it is okay to acknowledge theirs, find help, seek out solutions and overcome.  We don't need to be defined by our weaknesses, we just need to not be afraid of them. With help and effort, they can become the best gift we have to offer the world.

My book, Two Week Window; Living with Lyme and Thriving in Life, is certainly not a literary masterpiece.  But it is real, its true and I do believe my purpose in writing it was to help others, hopefully many.  I also believe we all have a story to tell and should tell it, there is much healing to be gained by delving into your darkest moments and much you can offer the world by sharing.  But most of all, I am grateful for the experience of a teacher that taught me to believe in myself, even when all the evidence suggests otherwise.  This book is available simply because of that. So Mr. Smith (aka Smitty) - thank you!

I hope when you read this book it inspires you to believe in yourself. The fact that it exists is proof that ANYTHING is possible!

https://www.balboapress.com/Bookstore/BookDetail.aspx?BookId=SKU-001191830




Thursday, May 10, 2018

VOCAL - Voices of Canadians About Lyme Speech May 5, 2018 at Ottawa City Hall

I don't need to tell you my story - the fact that you are here (VOCAL) suggests you have either lived it or heard it…Atleast one very similar. 

I was a recreational athlete and a park manager, who loved being active and in the outdoors.  Who, through years of misdiagnosis went from running an Ironman to barely being able to walk and fulfill her job duties.  

Sure it varies slightly from one of us to another, but every story includes some version of 
  • losing most of your money to treatment 
  • having to change or give up your job, 
  • losing a home, marriage or friends
  • losing who you were, social interests and many abilities 
  • and spending years of hell trying to get better
  • And thats if you're one of the lucky ones
You don't need to hear my story its yours or a friends or a relatives.  Its becoming too familiar to way too many.  

Very little is changing what is obviously a glaring epidemic and no one but those who know the torture of Lyme are doing anything about it. 

As you may know, I walked here today. I walked here with many of my tribe, who have endlessly supported me and carried me through the hell called Lyme.  

As you may know, today I started my plan to walk the Ontario portion of the TransCanada Trail.  

I don't know how often I can walk, how far, how fast, I may have to bike or rest, I just cant know.  Lyme will decide every day what I can and cant do.  

But I do know this, I have fought too hard to get to this point to not do what i can to help others.  I don't plan to stop walking until something changes for acknowledgment, treatment and diagnosis of Lyme.  Where that will take me no one knows. 

People say to me why walk? 

I walk because I once had a very hard time doing so and doctors told me I was fine.  
I walk because I promised that if i was ever able to again, I would do something about this medical travesty. 
I walk because the burden of finally understanding where the problem is and not being able to do something about it is literally too much for one person to bare.  


I walk because I cant take one more call from a friend about a child that didn't not get treated after a tick bite.  
Because I cant take one more email from someone who thinks they might have Lyme but no medical professional will believe them. 
I cant take another message from someone who was told they are fine 
- it wasn't attached for 24 hours 
- they weren't in a high risk area 
- or we don't have lyme here

I walk because doctors smirked at me, they told me I was perfectly healthy, maybe stressed, possibly overtraining or needed to wait for things to get worse.  
I walk because I should not have to have used all my retirement savings to get better when I told them something was wrong for years.  

I walk because I see it happening everyday, I see the doctors ignoring it and I see the patients crying for help.  

Because the only thing I can tell someone with Lyme is
  • prepare to get sicker than you have ever been, 
  • prepare to use up all your resources, 
  • exhaust the support of those around you 
  • and challenge everything you knew about yourself. 
Dr. Sam Donta said it best“if you ever want to torture someone, give them Lyme.

I walk because top medial organizations can use decades old science and very few studies to rebut new science and criminalize the doctors who try to help.

I walk because Canada should no longer be able to promote a treatment protocol based on one very bad study… that was not very successful… but determines whether someone suffers needlessly for the remainder of their days.  

A treatment protocol that is no longer approved by the Institute of Medicine.  
But we still follow it? 

I walk because many politicians asked me to share my story, swore that no patient should ever have to travel to the US again… but then did nothing to change it.

How is it that we all know there is a problem in this country but we continue to do the same thing, the same way - and expect a different outcome - is that not the definition of insanity?

I shouldn't have to explain why I walk when: 
  • Kids are in wheelchairs 
  • adults are dying lyme carditis 
  • most are suffering with crippling pain 
  • and families are losing their homes
AND all it would have taken was an appropriate dose of antibiotics after the bite or treatment when ill 

But I also walk because those suffering are also sharing the studies, challenging the scientific organizations and helping others get treatment.  
Because everyday a Lyme warrior is meeting with an MP and MPP 
They are protesting, raising money, lobbying, educating and fighting and they shouldn't have to.  There is no reason for it - there is treatment - if caught early on. 

I walk because even after diagnosis, treatment and much improvement the doctor that misdiagnosed me doesn't care to know how, why or anything about Lyme.  

I walk because Public Health educates about Lyme with very black and white statements - that are not always true
Because they say - there is no need to worry 
Because they even have the gall to say Lyme patients are fear mongering
I say to public health - walk a day in my shoes and then you will know what to say

So I walk. 

And I make this vow to my friends, those fearless warriors battling this disease. 
I make this vow to all the Lyme advocates who are relentlessly fighting to create change
and I make this promise to present and future generations who are at risk…

I will walk, bike, take a break if I have to and rest when I need to and then walk again until something changes…
I will walk for you, for me and for everyone 
because no one needs to live as Lyme patients have to…there is no need
The only need is change.  

I will walk for life if I have to because it is better than the torment of seeing, knowing and experiencing the misinformation, the misdiagnosis and the mistreatment. 

I will be quite honest with you, I don't know if my body can do this. I hate Lyme for that.   But I got to this point with unconditional support from my tribe, blind will and determination and a lot of help with from God. So with all of that backing me how can I not keep going.  

So for the next little while, you know where to find me: 
On the TransCanada Trail in Ontario,  praying for change.  

Until then….I walk. 

Sunday, April 15, 2018

TransCanada Trek for Lyme Disease

Date: May 5, 2018
Time: 2pm
Start: Behind Canadian War Museum 
Trail: TransCanada Trail/Ottawa River Pathway/Rideau Trail
End: 3pm Ottawa City Hall - VOCAL Ottawa 2018, A Lyme Disease Awareness Event 

On Saturday, May 5th Kristy Wood-Giles will be kicking off her Ontario portion of the TransCanada Trek for Lyme and you are invited to join her for a 3km portion. Five years ago Wood-Giles was on a hike where she was exposed to several ticks, one in particular who badly infected her with Lyme and other co-infections. She now spends much of her time educating others so they can learn from her mistakes. “There is a lot of misinformation and misunderstanding out there about Lyme and ticks and I feel it is my responsibility to do my best to protect others from my demise.” Explains Wood-Giles.  Wood-Giles has decided to start a TransCanada Trek to bring better awareness of the issues with ticks and Lyme.  

“My health has to be my primary concern and when dealing with Lyme you don't know from day to day how you are doing or when you may suffer or fatigue.  On the days that I feel well, I will do my best to walk and share information with others.  On the days that my body needs to rest and heal, I will suspend my walk temporarily, bike or limit my walking until I am better. That’s how life is with Lyme, but I can’t let it hold me back from sharing the truth until things change in this Country.” 
Everyone is at risk of ticks and Lyme Disease and the co-infections they carry.  In 2017 alone, the city of Ottawa was declared an endemic area, the percentage of ticks carrying Lyme Disease doubled as well as the human cases of Lyme Disease (and that does not include those traveling out-of-country for treatment). For the first time ever, the City of Ottawa has proclaimed May 2018 as “Lyme Disease Awareness Month” and the Mayor will be making that announcement at VOCAL Ottawa 2018.
“The fact of the matter is, even with all the awareness that is out there the real information that people need to understand to protect themselves is not being shared, nor understood. There are so many people out there doing good work trying to change things, but change takes time. I can’t just sit back and watch what happened to me keep happening to others. So, I will keep walking…” explains Wood-Giles
Contact:
Kristy Giles
kristygiles@storm.ca
613-852-7496
For TransCanada Trek Walking Schedule Check out: 

VOCAL Ottawa 2018
Lesley Fleming
vocalottawa@gmail.com
613-795-2632

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