American Ninja Warrior, Here I Come!

Because I am ridiculously tenacious, I have applied to American Ninja Warrior again. I’m feeling so much more prepared this year than last. Last year I went in with the mindset that it would be a hoot and a good way to raise awareness for Lyme Disease. This year I am going in with the mindset of being a real competitor.

In addition to doing this for myself, I am also doing this for all my fellow warriors! When I want to give up, your support carries me through. It helps me dig down deep to find the strength to persevere. I know that I have to keep fighting because you all are out there, rooting for me and if I give up, you might give up too. We’ve created this beautiful feedback loop of support!

(Now that the taping of the show is in the can, I can share my application video with you)

Allegra’s ANW8 application video

 

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There are bad days too…

Today I woke up feeling terrible. I could barely make it down the stairs. I was scheduled to ride my horse but was going to cancel because I didn’t think I could do it. But, with the help of my friends, I was able to make it out to the barn and get some good horse therapy. Unfortunately, the heat got to me and now I’m not doing well.

Since I show you all what I look like when I’m strong, I feel that it is only appropriate that I show you my bad days too:

Thank you all for your continued support!! I promise I’ll be up and fighting again shortly.

Why American Ninja Warrior?

I was super sick when American Ninja Warrior resurged in the US. I got it into my head that I was going to fight back from Lyme and I was going to compete on this TV show. Forget the fact that even pre-Lyme I would have had no shot at a successful run of the course, I was bound and determined. For some reason this seemed like a perfectly reasonable goal for a woman who was bedridden and required assistance to complete the most minor of tasks, including making it to the restroom.

Yet once I completed graduate school, another task that should have been impossible for someone who had lost their short-term memory due to the Lyme bacteria burrowing into my brain (or whatever it does, I’m not a neuroscientist), American Ninja Warrior appeared on par to me. Add to it that my dear husband supported me in this outrageous goal.

Applying alone was a herculean task. There was a multipage written application with each page having 15-30 questions each. And then there was the video… I had absolutely no idea how to film and edit a video. But Jeff rose to the task and taught himself Adobe and put together an amazing video (which you can watch here).

Keeping up my physical strength is huge part of my attempt to regain some sense of normalcy in my post-Lyme life. I rock climb, ride my horse, do this amazing thing called RedCord… but what I learned is in order to be a viable candidate, I had to step up my game. I added in Crossover Martial Arts, Kettlebells and NinjaKour. I treated this as a full time job.

I’ve answered the how but I haven’t touched on the why…

I wanted to do this for so many reasons. My original reason was because everyone told me I couldn’t. I wanted to show them all that I may have stumbled temporarily but that I was not staying down. I also wanted to bring attention to the plight of the Chronic Lyme sufferer. Honestly, I originally treated it as a bit of a publicity stunt. But through this journey my motivation shifted- when I announced that I had actually submitted my application, I was flooded with messages of people telling me how I inspired them to keep going in their personal struggles. They said that seeing me fighting back helped them do the same- no matter what, even if it’s baby steps day to day, moment to moment. Then I realized that I wanted to get on the TV to show everyone that they too can keep fighting. Whether it’s Lyme, or depression, or cancer, or your spouse left you… all of these things are equally impactful and you too can keep going.

No matter what happens on this journey, I have no regrets!

Lyme Disease Challenge

ALS Ice Bucket Challenge with a Twist of Lyme

Doing the ice bucket challenge? Consider doing it with a Twist of Lyme! Give to LymeMD and ALS. www.lymemd.org www.alsa.org

Doing the ice bucket challenge? Consider doing it with a Twist of Lyme! Give to LymeMD and ALS. http://www.lymemd.org http://www.alsa.org

I opted to do the ALS Ice Bucket Challenge and add in a Twist of Lyme. I did this because I suspect that, in at least some cases, that many autoimmune diseases (such as ALS, MS, Rheumatoid Arthritis, etc.) may be caused by the Lyme bacteria. Currently, Lyme research is underfunded. This NEEDS to change. There are so many unanswered questions when it comes to chronic Lyme. We need a formal research group at a major university investigating Lyme. I believe that Dr. John Aucott at LymeMD is best positioned to make this happen. There are so many great organizations that focus on Lyme awareness and I am grateful for the very important work they do. They have paved the way for us Lymies to be recognized and I am grateful but we need to fund research now.

So, I was terrified but I took the ice bucket challenge and gave it my own twist of Lyme. I gave $100 to ALS and $100 to LymeMD. Here is my video:

And, I started this movement with my family. My husband went first:

Then my niece:

Then my friend Stephanie joined in the movement:

My neice, Ashley braved the cold and so did her brother David. My friends Sarah and Nicole also joined in on the movement! I pray that the momentum continues to grow. If you are doing the ice bucket challenge, please consider adding in a twist of Lyme! Even just mentioning us helps build momentum and visibility.

And now my friend Michelle opted to do it with a Twist of Lyme!:

Jason also stepped up to the challenge:

My dear friend Ellie also accepted the challenge.

Possibly the funniest video came from Tosha:

The very brave Laurie, got out of bed and donned lyme green to tell her story and take the challenge:

What we really need is more Lymies to share their stories and explain why we need formal research into this very enigmatic disease. I know taking the ice bucket challenge is hard but this is an amazing opportunity to gain visibility and hopefully raise much need funds for Lyme research. Please consider rising to the task and sharing your story publically.

To understand the quality research being produced by LymeMD, here are two examples of peer reviewed articles they have published:

Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients.

Serum Inflammatory Mediators as Markers of Human Lyme Disease Activity

Additionally, I found an entire website that claims there is a link between ALS and Lyme. Study: 9 in 10 ALS Patients infected with Lyme bacteria. However, I am not a scientist and cannot verify the degree of their scientific methodology. Caveat lector.

Thank you for taking the time to read this and hopefully you will share it widely! Bless you ALL!

Intimate Strangers

While networking with a fellow Lymie around Lyme awareness today, she used the most fabulous term, “intimate strangers”. This resonated with me because that is truly how I feel about all of you, whether or not we have met in person. We have connected on a deeper level than most friends achieve after years. We know and understand the pain and struggles we go through daily. We share in the joy of the little triumphs (such as making it out of bed finally) and the larger ones (finishing a grueling course of antibiotics).

I wanted to take a moment to express my gratitude to all you, my intimate strangers.

And if you could take a moment to check out Kyoko’s blog: http://lymeinthecoconut.wordpress.com/

What is this Fitbit thing?

This is a post I wrote on my other blog, Clever Clover’s Random Musings . I have found my Fitbit to be incredibly valuable in my quest to regain my pre-Lyme strength. And Lord knows, every little thing can help!

Link

Fear and Backsliding

I’m feeling fear about backsliding. I’ve lost muscle mass that I worked so hard to build up. I know that it is a process. I’m wondering: am I alone here? Please leave comments about your experience. Thanks!

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