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February 28, 2010

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elizabeth bunsen

thank you
sweet friend
for your blazing heart
and the trails
that you are so bravely
blazing for others
that our paths have now crossed
has forever altered
my way of "seeing"
for this and more
I am ever so grateful...

xox - eb.

Meri

You are still wildly passionate, my dear, dear friend. I love you and your brave heart.

elizabeth

Thank you for this amazing post -- for your testament -- your witness.

Maija Lepore

You move me. You amaze me. I adore you Rebecca! You are so vital and passionate in my eyes!!

deb taylor

Rebecca, you are brave, wild, full of grace, passionate, and the true definition of HOPE. Thank you for spilling open your heart to us all. We needed this flood. I am immersed in you.

wini

Dear Rebecca, you are so brave to have been through so much suffering, and to share so honestly in your post. I was very moved. Your wonderful spirit, strength, passion and personality shine so brightly!! I'm so glad I met you online. You are a real inspiration! :)

Stephanie

Rebecca, what you offer others of yourself here is indispensable. Just as the women you met who searched and searched and FOUND you, others will find HOPE here.

We are all indeed blessed to have crossed paths with you.
x...x
steph

rochambeau

Dear Rebecca,
Coazon aflame~
Thank you for your words, your courage, your grace. You are a Survivor!! and YOU will reside in my prayers.
My mom also has a rare disease. Also a dr. that said horrible things once to her that were NOT true. She is like you......intelligent and a fighter!

Thank you for helping others through your words.
Love,
Constance

Lee Anne

Rebecca, you are an amazing woman...full of life...I am blessed to know you( even if only in cyber space) and Thank you for sharing your story.... beautiful soul.

bethany

wow.
this took my breath away.
you write like flames, like crashing waves, like pelting rain. i felt every word.
this is so raw and beautiful.
your life is incredible to me.
i feel ashamed that i have such trouble living and moving when my body is healthy.
you are like a glorious bird to me, circling around, showing me what life could be, should be.
i am so amazed at your strength and preserverance. That damn first doctor, orphan disease. ugh.
look at you now. i want him to look at you now. of course food and moving matters, of course you matter.
you astound me.

love love love
and awe.

abi monroe

Oh my gosh. I am speechless as I sit here and worry about stupid trivia.

I think you should write a book.

Leslie

I've been reading your posts tonight about your illness. I don't know why I didn't see them before - perhaps I wasn't meant to read them before now. Rebecca, your light shines, so brilliantly. You inspire me.

Leslie

Okay, I had to come back and read this again. Genzyme rang a bell, and I looked it up to find they also make "Seprafilm," an adhesion preventative. I actually had one of the surgeons who works with Genzyme operate on my adhesions twice in the past 4 years. Unfortunately, the operations were not successful. But Genzyme is still working on new products, including a gel that can be used to prevent intestinal adhesions, which is what I have. It may be too late for me, as I have lost so much intestine that more surgery is contra-indicated unless it's lifesaving.

Obviously, I relate to so much of what you write about your illness. The pain, the extreme lifestyle changes. My changes are different than yours, yet we have much in common. I particularly relate to this:

"My deepest struggle is having such a vital, passionate desire to live a life well lived. My optimism and desires are just as alive and intact as when I was healthy. The frustrations lie in having all the momentum and inspiration a heart can hold, and a body that cannot possibly deliver. More and more I am forced to reinvent myself. Let go as gracefully as possible to the ever growing list of what I now cannot do. Try and focus on what is still possible and be grateful for it.

My life seems like a sorry collection of little deaths. As others count their achievements and make plans for the future I struggle to navigate through life one day at a time. So many friends lost in the disparity between their pursuit of a healthy lifestyle and my mounting disabilities."

And yet I am finding new joys and new friends through this world of blogging, including wonderful you.

I read in a later post that you are having the new enzyme therapy. Has it helped to stop the progression of your disease? I hope and pray it has. And whatever path you and I walk, may we walk in grace.

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