Sunday, March 9, 2014

1 yr ago

A little over one year ago, I created this blog and started to make my story public.  Wowee, that's scary! For those who know me personally, know I'm insanely private and making myself transparent is not easy for me.  This disease is rare and I needed answers.  There isn't many answers out there, so I figured let me put my story out there and hopefully I can help others who are struggling for answers. 
In this past year, I have approximately 10,400 blog views including views from all over the world! Crazy!

Almost exactly one year ago, I also finally joined the facebook world --mainly to more easily connect with people, share my story, and spread awareness about organ donation. I created a tshirt I'm really proud of and have sold ~450 here in the US and my good pal Kirstie (whom I met thru this blog) and her family in Canada sold many shirts to support organ donation and her son Bryan battling this same nasty disease.  Here is the cool design:

I even got my design copyrighted!! Thank you to all who have bought a shirt and still wear them faithfully. It means a lot!
There is more to my story to tell--some of it I'm not ready to blog about, some of it is unknown, but most is laid out in these posts from the past year.  THANK YOU to those who faithfully read this. I've met some really great people due to this blog, thank you to those who leave comments and for praying. The support means so much..


  1. We are so happy you took that leap of faith and put it all out there. Before finding you we were in that lonely,distressed,apprehensive place. You are and have been a wonderful support and treasure to us. Hugs ! Kirstie :)

  2. God bless and keep you! You are still in our prayers...

  3. As unfortunate as it is that we both have this disease I am feel blessed to know that i am not the only one who has this rare uncurable condition. Hope that doesnt sound weird but im sure you know what i mean.