Tuesday, March 26, 2013

Lyme Disease Awarenes My Way

 This photo I took a few years ago holding my camera in one hand praying I got the right angle.  I have no make up on to cover up the acne scars or tired eyes.  I wanted this picture to tell my truth.  I never thought I would be using to tell my Lyme Disease journey in such a powerful way.  Please feel free to share it around.  It really says in few words so much of what I have dealt with while in treatment over the past 5 years. It tells a truth that words cannot express.

I asked my son to draw what he thought Lyme Disease looked like out of curiosity.  This is what he drew.  I was floored.  He understood way more than I gave him credit for.  No child should have to deal with a sick parent.  And I hope I keep getting better from here so he can have a fully operational mom.  I am so lucky to have a beautiful boy.                                                                                                                                                                      
He is only 7 years old and he has a deeper understanding of what I am going through than most adults.  Its amazing what kids understand.  He still asks me if I can eat something and if it has gluten in it.  I have Celiac so he tells me when he thinks I can eat something and offers it to me.  He thought it was a bummer that I couldn't eat his pizza with me or oreo's.  He is very sweet.  He gives me a good reason to fight to be as healthy as possible.  I am grateful for him.

I created my own protest poster today and took a picture of it.  This is not the final photograph but I think this says it all.
I will be collecting similar photos of Lyme Warriors posters through the end of April if you are interested in being in my US Lyme Disease Awareness Video.  My final photo will be of my holding my poster.  That's the type of photograph I hope to collect.  But if you want to take a photo of your poster and send to me please do so!  Please send photographs and your name and place you live to angbet35@gmail.com

Be a part of the World Wide Protest, Change the World, and help Spread Lyme Disease Awareness around the world in May!

My recent video blog and my feeling and asking you to join the World Wide Lyme Disease Protest.

Saturday, March 23, 2013

I just want a break

As a Lyme Disease Survivor you would think I would be used to disappointment, let downs, lost friendships, hurt, pain, but the sting of it never wears off each time it happens no matter how hard you try.  It is very real each time.  I honestly don't know how I can look at going back on treatment again thinking it would be a breeze.  I realized oh too quick it was going to kick my ass all over again.  I can lead a somewhat normal life.  At least it "looks" normal, whatever that means.  I feel horrible at night with the air hunger its like an asthma attack back to back.  I have little relief from the feeling.  So any housework or short walks make me feel out of breath like a brick is on my chest that never leaves and I still have to move on doing what I need to do despite it.  It wears on a persons soul having to push through despite feeling physical useless some days.  You know you have the muscles and the endurance but the feeling is over powering.  I that feeling of loss.  It scraps away at my hope.  I just want to get off this treatment and give up.  Pretend everything is okay and move on.  I know I can't do that.  This is the truth of Lyme Disease.  The ugly truth. 
I had dreams like having three kids by now, in a finished house, with my family and friends close.  The longer I am in treatment the longer I feel the isolation Lyme brings.  I do have some friends that are kind and family who care.  I just wish it was like when my grandparents were alive when my Dad's side of the family got together.  Not anymore.  I hate holidays.  The holidays like Easter that my family used to celebrate those traditions are long gone but I still miss those get together's.  I morn them.  Nothing like combining an old Loss with a new one to make your holiday even better.  I get so angry because I can't change the way things are.  I still need to finish out this treatment and I can't force my family to connect with each other again.  Both are out of my hands and it hurts.  I guess I am morning a loss deeper than just Lyme Disease.  Its layers of pain.  And I feel like there is no way around it.  It just keeps welling up inside me. I just want relief.  I'd rather deal with the Lyme than deal with pain of the soul on top of it.  But this is the journey we all face.  Making peace with reality of circumstances is never easy.