Friday, April 4, 2014

USA Protest 2014 IDSA Headquarters

 "The Mayday Project will be holding a large protest at the IDSA
headquarters in Arlington, VA. on May 22-23, 2014. Please plan to attend
and fight for the rights of those suffering with Lyme
disease. This year change will happen! Change starts with you!"

Washington DC Lyme Disease Protest 2013
 I walked around the protest last year and took photos.  I couldn't stand still I was so nervous.  But as I moved around I realized I knew so many faces!  I had met a lot of people online and now I was connecting those facebook friends with real live people!  It was crazy!  There was around 250 people for this portion of the rally.  It blew by mind that, that many people showed up.  It was like a reunion of sorts.
 I was reading the different signs people made and realized that each one was unique and different.  We all had something important to say in our own ways.  But the theme was the same that day.  We all wanted to see change!
Even people walking by us were curious what we were about.  And when they stopped we handed out fliers and talked to people.  If someone seemed like they were not feeling okay a person would get an extra wheel chair for them.  Or pass out waters to make sure everyone had fluids.  We were aware of each others needs and understood each other right away.  It was likely a big Lymie party!
 As people began to speak, the mood was somewhat somber but once in a while you would hear people chanting different things like "We need change".  Speakers were talking about their own life stories and experiences but they were also talking for all of us. And we showed our support. 
 I was impressed by everyone's passion and determination in unison to bring about a change in a world that did not recognize Lyme Disease.  There was a lot of green clothes, signs, bracelets, even some dogs wore green.  I was impressed by family members, loved ones, and friends who also joined us wearing green and ready to do what they could to help us get our message out to the public.

 I think the thing that impressed me the most was everyone was in this together.  We all understood that.  It wasn't about who did what.  It was about we all brought to the table what we could to make a difference the best way we knew how.

 I really like the graphics on some of the signs because they really sent a strong message. 

These signs below broke my heart.  I understood the pain behind those words.  It reminded me the impact that Lyme Disease has on all of us.  I thought these signs were needed to show the public the depth of our hurt and pain. 


To know more details about this rally and protest this May 2014 please visit their facebook page
Or Facebook Event Page:
Here is a great carpool page for those who gotta travel to go!
A great Flier to invite people to this event:

I personally went to last years protest and I had a blast meeting my online Lymie friends, spreading awareness, and networking.  Its really like a rally, protest and festival all rolled into one!!!

We had several speakers at the rally last year.  And Kermit the frog gave them support.  It was cool hearing different advocates, doctors, and activists not only talk about their personal stories but how they took that journey and used it to help others in their own ways.

There was 250 people at the rally portion of the day

Our first group picture of the day with the most amount of people

After lunch at the food trucks we had a die in group photo taken and then we began our march 150 of us, around the white house.  The walked a couple of miles.  We had a lot of people take pictures of us and video the whole way.  It was the first time was a part of a protest ever in my life.  It was strange having people stop to take pictures of what we were doing.  We just kept chanting the whole way!  "When will you see there is chronic Lyme Disease"  We had one person in front on the mega phone and in different sections in the long line different people took turns chanting loud and proud!  We carried our signs and just kept going!

At the end of the day we were all tired but it was worth the walk!

Please watch the Mayday's Faces of Lyme Video 2014 !!!!

Thursday, April 3, 2014

Passion is the Fuel

"passion is the fuel that keeps me going"

I've been in treatment for Lyme Disease and Co-infections now going into my 6th year.  I still sometimes look back and think man I've come a long way.  I can somewhat keep up with my 8 year old son and homeschool him full time.  I can walk a few miles every week and not be sick for days after.  I have stretches of time where I simply forgot I'm sick and enjoy what life brings.  On the days I need to regroup and rest I am reminded that I still need to pace myself and that Lyme Disease never seems to be fully gone.  I still worry about my son if he has Lyme Disease from me.  He now needs to be on a similar Celiac diet as me and is doing much better on it.  I never thought of myself as someone who could bring about change, be a leader, a loud voice in the crowd, or a trend setter.  I have always thought of myself as the Listener, the Advocate, the Loyal friend, the Kind one, the Gentle Soul.  I'm not saying any of these qualities are more important than any other ones.  

But as I reflect on where I am now I realize I am in a different place than where I started over 5 years ago.  My experiences as a Lyme Disease patient has shaped my heart, soul, mind and spirit.  And there is no going back.  I cannot help but want to help others with Lyme Disease not because I have all the answers although I wished I did.  But because its an overwhelming internal passion.  Its a passion that fuels me to keep going.  I cannot pass by a post on facebook that says someone is having a bad day, loosing hope, or feeling alone.  I have felt those feelings many many many times.  I just want other's to know they are not alone just like someone did for me so many times before.  To Pay It Forward.  I truly believe in my heart of hearts that what goes around comes around.  For every action there is an opposite and equal reaction.  If you send out anger, resentment, and hate that's what you will get in return.  If you send out humble, free love with no strings is always comes back.  

Even at my sickest giving to someone else has pulled me through the darkest days.  And there are times I've helped someone out and nothing happened in return for months.  But when I least expected it a kindness always came my way.  I can't explain why the world works this way.  Why our universe seems to be based on these invisible principles.  I never thought just breathing and laying on a couch fighting for my health was a protest and valiant thing on its own.  That those simple actions were heroic and powerful as much as someone holding a protest sign on a corner.

  I used to minimize the power of photographs, poetry and words.  I have stopped doing that now.  I realize our very breathe has meaning, power, and contributes to the very energy all around us.  I heard so many times while I was sick I was valuable even sick as hell.  I thought Okay? How is that exactly?  I didn't realize just pushing forward inch my inch as best as I could was a story of hope for someone else out there.  But its not just my story that matters.  All of our journey's and stories matter.  Good or bad.  I used to think my very presence in this world never mattered and no one would care if I left.  Be careful what you minimize.  You never know the impact you are making until you can see yourself and circumstances from a different view point.  

Perspective is everything.  Its taken me years to see more and more how each life has an impact and power.  We forget how powerful we human beings are in the midst of so much pain and hurt and destruction.  We have no idea what those moments will bring out in us and the long term impact they may have on own very souls.  Please don't minimize your awesome tragic beauty.  Your struggle through Lyme Disease might be carving you into something greater than where you started.  And you never know what the impact of that will be.  My journey has made me a passionate advocate and activist.  I'm still a human being.  I still wait some days wondering how long a stretch of good health will last.  But I find as I heal I am more focused on living everyday to the best of my ability.  

My perspective has widened and I see now the ways I can help.  I also learning boundaries with it.  Having times where Lyme Disease is set to the side so I can join the joys of living.  I feel like the Lion within me is tamed.  He tries to come back and bite me but I know how to put him in his place.  The whole process of my healing is not perfect and I still need some level of treatment and medical support.  But my heart and soul are free.  They are no longer run by an illness.  I plan to keep it that and I plan to rebuild myself and love myself one day at a time.  

“I can do things you cannot, you can do things I cannot; together we can do great things.”

Mother Theresa