the latest silver lining: advocacy!

created For the longest time, I only told my closest friends that I was sick. Only a small circle of people knew I was fighting a "mystery illness" until I was so sick that I had to leave New York and seek treatment in Texas.

First off, I was in denial.  I thought I would this process would look like this:

a) get diagnosed

b) get treatment

c) quietly get better.

I also didn't want to let anyone into one the darkest times of my life. Losing a family member is one thing, getting one rare diagnosis is another thing -- but fighting both a life-threatening and extremely controversial illness? Nope. Not letting anyone in that one.

Then, one day, I realized I was being selfish. What if I could use my story to help others? What if I could use any connections or talents to fuel advocacy? What if this whole battle was for something bigger than just myself?

Finally, after a year of being sick, I promised myself, others, and the Good Lord that I'd use any ounce of strength and health to help fight for those who can't speak for themselves. For me, this isn't some detached, faraway cause. Legislation directly affects how I operate every single day.  People suffering aren't stock images on a charity brochure -- they're my friends.  And one year later, it's already been a wild ride.

Ever since I finally shared my story about a year ago, a lot has happened. A lot of good things! So, here are some great things that have happened in the sake of Lyme Disease awareness and advocacy:

1. Bill S7854, passed by the NYS Senate

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This was a huge win for both Lyme patients and doctors. This allows New York State residents to be treated for Lyme disease from their doctors using long-term antibiotics without doctors fearing losing their licenses. This bill alone will save thousands of lives as New York residents seek treatments for Late-stage Lyme. This is one of the first bills of its kind in state legislation, paving the way for dozens of other states to follow suit.

This win, I must admit, is not my own. I owe countless thanks to my friends and family who called senators and Gov. Cuomo's offices multiple times to make sure he knew what his constituents thought. He was lobbied fiercely by insurance companies not wanting to pay for the antibiotic treatment used to treat Lyme patients (true story).

Governor Cuomo had until midnight of December 17th  to sign the bill; otherwise it would be deemed vetoed.

He signed it at 11:57pm.

I sobbed once I heard.

 

2.  The Weather Channel: When Lyme Disease Won't Quit, a Controversy Simmers

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This one caused quite the stir. I was introduced to a Weather Channel journalist through a friend, and she did a great job telling my story. Fun story: before the current headline, the first headline for a few hours read: "She Thought She Was Going To Die." Fortunately, they changed it within a few hours. :)

Since it was on the top of the front page of weather.com, I got a lot of calls from concerned family and friends. I'm glad they read the story, though! Ha!

For those of you who found my blog through this article, welcome! I hope this blog gives you encouragement that there is life outside of Lyme.

3. Buzzfeed: 18 Things You Can Do When a Person You Love Is Facing a Scary Diagnosis

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This one's another fun one. Dear friend Rachel emailed me: "Elise! The Buzzfeed needs you!" They were asking for submissions on well what to do when you get a scary diagnosis. I sent in my two cents, and they decided to quote me! I think when people go through scary/chronic illnesses, there's a stigma and awkwardness attached to it because people don't know what to do.

Just like grief, it's helpful to spell out exactly what's helpful and what isn't so both parties are better and closer for it. We all win. :)

 

4. Project: Living Well Website

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My friend Lee asked me to share my story on his company's blog...and I gladly obliged!

 5. TBDA and LRA Merger to create the Global Lyme Alliance

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This is one of my  all-time favorite things that's happened this year. I've had the privilege of serving on the Tick-Borne Disease Alliance Junior Board, where we're been able to implement creative ideas for advocacy to speak for those who can't speak for themselves.

This has been a long time coming, but this past February, Connecticut officially approved the merger of the two biggest Lyme non-profits/advocacy groups in the US to create a superpower with one goal: eradicate Lyme disease. And so...the Global Lyme Alliance was born.

I'm so excited to be a part of the Global Lyme Alliance Gala committee that will be taking place this October in New York City. We have some huge names involved (I'm not sure if I can say just yet or not!), and I couldn't be more excited.

But most of all, as crappy as this whole thing is, I've met the most amazing, passionate, and resilient people along the way. And I wouldn't change that for the world.

Until next time,

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