An Awesome First Lyme Walk

Turn the Corner walk T-shirt!

Today, May 15, 2011, is the 1st Annual International Virtual Walk to Turn the Corner on Lyme! 

Thanks to all of YOU for your incredibly generous support, I raised over $1000!!!! ($1042 to be exact). This is more than four times my goal of $250! If you would still like to contribute please click here. My fundraising page will be available through mid-August. 

Me and Mom all dressed for the walk! She is at the grocery store right now raising awareness while she shops! :)

Over the last few weeks I've be uplifted by the messages from FirstGiving letting me know a donation had been made. You all overwhelmed and humbled me with your kindness, enthusiasm, support and generosity towards this cause. I want so much to send you all personal hand-written thank you notes, but I know that is just not possible right now. I hope you will accept my thanks in the form of this blog, and if you have not yet received a personal email or text from me you will. Soon!

One of my youngest supporters! :)
I woke up this morning to this photo of Lana and the message: "Good luck on your walk today, Auntie Em! We love you!!!" Lana looks a little unsure about how this shirt is impeding her ability to be mobile! Oh, how I am in love with Lanadoodles!

I remember when I first got sick and was diagnosed with Chronic Fatigue Syndrome. The CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) Association of America was a small, fledgling organization fighting for awareness of an often-dismissed and little supported illness. Over the years, the CFIDS Association of America has been instrumental in changing public opinion about CFS, funding research, advocating for funding of CFS research, providing support and information to patients and doctors, raising awareness, and even calling out the NIH for misappropriation of funds designated for CFS research. It's an incredible organization that has grown tremendously over the past 13 years since I first discovered it. While CFS has a long ways to go in research and understanding, the resources, awareness, and research has grown tremendously. Patients like myself are indebted to the CFIDS Association for fighting the good fight on our behalf.


I also spent many years finding great solace in DINET (The Dysautonomia Information Network) where I found a group of supportive and wonderful people, many of whom are my close friends now. I have been in touch with some of the same women for over 10 years now. Every day, I am in touch with women I met on this forum. Together, we support one another, understand one another, make each other laugh, help each other navigate the symptoms we are experiencing, and combat the isolation and loneliness that chronic illness often brings. Many days, we may just be in touch via FB or texting, but we are always supporting one another. It was on DINET that I first met two women who led me to pursue the diagnosis of Lyme Disease. There is a lot of overlap between CFS, Dysautonomia and Lyme.

Rachel, one of my close DINET friends, all decked out in her Lyme Walk shirt. Her cutie patootie, Adelaide, wanted to be in the photo too! :) Thanks for wearing your shirt Rachel, and for using your precious energy points to take a photo! My phone just dinged with a text from you!

I share this story about the CFIDS Association of America and DINET because I now find myself living with another misunderstood and invalidated illness. I feel so strongly about supporting fledgling non-profits like Turn the Corner Foundation, CALDA (California Lyme Disease Association) and Time for Lyme who work tirelessly to raise awareness, educate, support, advocate and fund research. 

In many ways, the support I have found from all of these organizations has literally been a life-saver--emotionally and physically. My life has been greatly enriched by the personal relationships I have formed as well as by the information, awareness and research these organizations support.

Lyme disease is an urgent and growing health-care crisis. Without organizations like Turn the Corner we would not have the much-needed efforts being made to raise awareness, provide support, fund research, educate doctors, and so much more! Seriously, how did I end up with all of these little understood illnesses? Without organizations like Turn the Corner Foundation who would speak up against the IDSA and its denial that Chronic Lyme even exists? 

I'm excited to watch and support the Lyme organizations grow and bloom, as I did (and continue to) the CFIDS Association of America. I am excited to see the difference that such organizations of dedicated people will continue to make. I am excited to help turn the corner on Lyme! Thanks to all of you who are helping to pioneer these efforts to turn the corner on Lyme. Every time you make a donation, watch Under Our Skin, or talk to another person about Lyme disease you help to create the ripple that will turn the corner on Lyme. 

Blessings and thank you,

Emily

NOTE: Blogger has been having a LOT of issues lately with losing posts, retrieving them, republishing them, etc. Last night I wrote a much better post on this topic and lost it. I am trying to re-create it. :P If you are a subscriber and have been receiving old blog posts that you've already read, it is because Blogger is a bit messed up lately! Hopefully they will have things fixed SOON! :)