Lyme rally was a reality check

Heather and I attended the Lyme rally with Joe, Kevin, and his parents. It was one of the first nice weather days in DC in quite a while. I went there with so much hope and desire to help with spreading awareness.

The rally attendees were easy to spot because everyone was wearing lime green attire. Some awesome ladies rocked their lime green dyed hair and, most were wearing lime colored sunglasses/arm bands/nail polish.

I expected more people at the rally but the reality was that too many people were too sick to attend or if they aren't from the DC metropolitan area they may not of had the money to travel since they're spending hard earned money on treatment not covered by insurance companies.

The common denominator for all the people there was that they have Lyme, they love someone that has Lyme, or they lost a loved one to Lyme. I wish I could say they HAD Lyme disease. However, sadly there isn't a cure. Another reason that these AMAZING advocates spent countless hours organizing this rally. 

A huge thank you to everyone who attended to bring attention to this insidious disease. I am confident that we are getting more exposure and that the public is becoming more aware. However we can't stop, we must keep pushing forward, we must continue to insist on more reliable testing, affordable treatment, and a cure. I also wish the  media had stopped by.  I sent several press releases that week to local news stations and never heard back.  Silence will not stop me.

One thing I've learned through this journey is that you can't judge a book by it's cover. When I looked around at all the people there, it was sometimes difficult to tell who had Lyme. You know the "but you don't look sick" statements.  These brave Lyme patients pushed themselves to be there and smile, mingle, and show their support.

As I have said numerous times before, Heather was "lucky" that she had a diagnosis within two months of being sick. Sadly it wasn't quick enough to save her from the suffering that she's having and what we now know is chronic Lyme. We know that the six weeks of IV treatment was not enough to cure her. However, if you look at the IDSA and CDC guidelines, Heather received what they considered to be the ultimate treatment. Rant on that later.

To back up a bit, before the rally we finally met with a surgeon and they decided that she is going to have her gallbladder removed in June. After the surgery she will be reassessed and hopefully her body will be healed enough to begin additional treatment to cure her Lyme. 

Heather and I had always planned on staying for a few hours at the rally and then attending a three hour seminar held in the Dirksen Senate building. However after the appointment with the surgeon then attending the rally for a few hours, she was too tired to stay. So we went home to watch a live stream of the conference. Sadly, this nerd couldn't get the live stream to work, so we will watch a copy of it later. 

On a lighter and funnier note, Heather actually made me laugh out loud after the group "take a bite out of Lyme" photo. We were standing around talking and when I turned around Heather had manipulated her slice of lime into her upper row of teeth. It was one of her many bartending talents from her bartending days in NYC. When they were bored or trying to entertain each other and clients, they would take the garnish, tear out the fruit leaving the yellowish underside of the peel. Then, they would cut chunky and uneven teeth. 

So my adorable Heather, did this without anyone noticing, and when I turned around to see how she was doing, Heather was smiling with her fake lime teeth. I just love her spirit and silly side. Even though she was having a difficult time rallying at the rally, she made the most of it and I got a FANTASTIC photo op that made me smile. 

I've attached a few of the pictures from the rally. You'll see the group shot and then a few individual shots of the Lyme quilt and various people that attended and were key to the organizing this two day event in the DC area. Thank you everyone - from the bottom of my heart I appreciate ALL and EVERYTHING that you do to spread awareness.  Wish we could have been part of the protest in front of the IDSA (which I attended last year) but previously scheduled appointments and meetings prevented us from attending. 


This weekend, one of Heather's NYC friends, Maria, is hosting an event in New York City in Astoria on Saturday the 21st.  Heather won't be able to attend - but she will be there is spirit and on the banner that we sent up.  Thank you Maria for spreading awareness, but most of all, thank you for being such a good friend to Heather and paying it forward and thinking about others.


xo
Lisa