Dear Family, Friends, Supporters, and Fellow Zebras,

Finally!

After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 3rd Annual, “An Evening with Chris Trapper and Tony Lucca to Benefit Invisible Illness Awareness and Research.”

There have been many meetings so far.  So many triumphs.  So many acts of kindness and generosity.  So many emails.  And yes, even a few frustrations and tears along the way.  I have learned that just goes with the territory.

Two years ago, the dream was born for Allie and me. 

I always said I wanted a tattoo. I just didn’t know what I wanted forever. It was that word, “forever” that got me every time I thought about it. What could I put on my body that would still mean something to me when I was 70? 100?

I liked the way a simple word looked. If you go to my Pinterest page, you will find that over the year, I had pinned a few word tattoos. Faith. Courage. Love.

But again, the “forever” was the thing that got me.

Thursday night, Brad and I headed back to Mishawaka since my prolotherapy appointment was at 8:15 Friday morning. After rescheduling three times because of weather and schedule conflicts, I was just desperate to get in a treatment when I could.

I started prolotherapy treatments in 2011.  I have lost count as to how many I’ve had. I have learned along the way that prolotherapy is controversial in the world of EDS. The first EDS doctor I saw after I was diagnosed actually did not recommend it, although he admitted he did not know much about it. At that time, I was having a horrible time keeping my back and head supported without a neck or back brace. That doctor actually diagnosed me with cranial instability and sent me on my way with a referral to a spine surgeon, telling me he suspected the surgeon would determine that I needed a skull to C-3 fusion.

I traveled back to Mishawaka for more prolotherapy on Friday.  In the past I had gone no more than 8 weeks between treatments. This time it had been 11 weeks.  My body, especially my neck and jaw were telling me it was time, but I still felt pretty encouraged because I was doing better than I thought I would after 11 weeks.