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! :)

Under Our Skin to Air on PBS

As of now, there really is no medicine for someone like me. The reasons why there is no medicine for Lyme disease are complicated, overly-politicized, and outrageous. For me, seeing Under Our Skin was the first time I truly understood the complexities of this illness and the powerful ways in which patients are being neglected and doctors are being kept from treating people like me. There is a reason the production company for Under Our Skin is called Open Eye Pictures. This movie will move you. 


As part of Lyme Disease Awareness Month, PBS stations across the country will be airing a shorter version of the film Under Our Skin.


Click here for a schedule and list of stations.


For those of you who haven't yet seen the film, I highly recommend watching it. The film is also available on demand from iTunes, Netflix, Comcast and many other ways. I still have copies available to lend and it is probably at your local library.


Interestingly, the decision by PBS stations to air the film has been met with resistance by the Infectious Disease Society of America (IDSA). The IDSA has been working hard to get PBS stations to pull the broadcasts, claiming the film is "dangerous for viewers" and full of "conspiracies."


So far, one Minnesota PBS station did pull the airing of the film after discussions with the IDSA. Thankfully, most stations have not changed their decision to air the film.


As stated on the Under Our Skin blog post on this topic: The Public Broadcasting Service (PBS) was created in 1967 to "provide a voice for groups in the community that may otherwise be unheard," and serve as "a forum for controversy and debate" by broadcasting programs that "help us see America whole, in all its diversity."


I am so grateful to the people of Open Eye Pictures who were willing to shed light on such a controversial subject. I'm grateful to PBS for staying true to its mission, for making this film available for viewing to so many more people, and for allowing those of us who feel unheard to be heard. 


On the subject of gratitude, THANK YOU so very much to those of you who have pledged to support me in the 1st Annual International Virtual Walk to Turn the Corner!!!! Because of your generosity I have more than doubled my fundraising goal of $250! I've been so lifted up and encouraged by your support. (Click here for my blog post on the topic and click here to go to my fundraising page.)


With efforts from so many people on so many fronts to raise awareness about Lyme disease and other tick-borne illnesses our hope is that someday soon there will be a medicine for someone like me.


Blessings,


Emily

Virtual Walk to Turn the Corner on Lyme Disease

Me and Mr. Fuzz outside in the yard today.
Sadly, it is easy enough to get a tick bite in your own backyard.

Today is May 1st. May Day. The 2nd birthday of one of my favorite little boys. Time for the May flowers that come after April showers. 


Today is also the first day of Lyme Disease Awareness Month, in which I am very excited to be participating for the first time this year. I have decided to be a part of the 1st Annual International Virtual Walk to Turn the Corner on May 15th, 2011. 


Please check out my very own fundraising page to learn more about this event and to read my summary of why I am participating in it. I encourage you to visit my page even if you are not able to or are not interested in making a donation.

As much as we all love Spring, it brings with it the unwelcome presence of ticks. Throughout this month, and beyond, I hope to continue to blog more about Lyme Disease and why I hope to become more involved in speaking up about it.  (I do not have the intention of changing the focus of my blog, only to add another dimension to it over time.)

For now, please consider joining me on May 15th, 2011 by making a small donation ($5 or $10) and cheering me on with your Lime green pom poms! (I'd pick pink, but that's just not the color for Lyme Disease awareness!).


Today, Mom and I will also engage in our ritual of applying Asher's monthly dose of Frontline to keep him as safe as possible from Lyme disease and ticks. Please keep yourself and your loved ones as safe as possible from ticks, Lyme disease and other tick-borne illnesses during what is looking to be a prolific year for ticks all over the country.


Blessings and Thank you in advance for your support!


Emily

Lyme Disease Awareness Car: Please Vote!

Today, I'd like to ask you to take a few seconds of your hump day to VOTE for the Lyme Disease Awareness Car. 

Doing so will take will take you less than ten seconds. You do not need to enter any personal information. Just go to this page and click VOTE. 


You can vote one time per day until May 1st. So, keep voting the rest of the week!


If our car wins, the design will be printed on a car in an upcoming NASCAR race! How cool is that? The winner will be announced in Charlotte, NC during Lyme Awareness month (May).

To read a bit more about this campaign and car please check out this short blog from CALDA (California Lyme Diseases Association of America).

The car is really cool.

Voting is a simple way for you to speak up for Lyme disease awareness. (The fact that the spellcheck in Blogger doesn't recognize Lyme as a word shows we have a long ways to go! :P)


Thank you in advance for voting! And thank you to all of you who have already been voting this week when I post the link on Facebook! I have rockin' friends and family!


(If you have little kids who love cars, they will probably like the Vrrooommmm noise and the spiffy car on the website!).


Blessings,


Emily