AZ Week One

Well, I've officially been in AZ over a week now.  I had a bit of a breakdown today (actually everyday but not because of the treatment today).  Sara, the incredible friend I have been blessed to witness overcome GP and travel with, packed her bags and is heading back home.  There are a number of mixed feelings swishing around as I've spent time with her over the past 8 days.  TOTAL awe at her recovery and ability to eat so much now without painful reprocussions.  Then comes jealousy, anger, and sadness that I am still struggling.  These are very honest and expected feelings that I should not be ashamed of.  I mean, who hasn't felt this way when what you want something sooooo much and see it become real for others but not you?  Of course, there is so much love for her and her ability to understand and support me through my own journey it brings tears of joy to my eyes.

Daring Greatly

Three days into my trip and I feel the need to share part of this journey so far.  It is a beautiful, sunny, warm afternoon here in Sedona.  I look out the window and see giant red rocks towering towards the brilliant blue sky. After the nurse came to visit today and change my PICC dressing I couldn't 'help but venture out for a walk around the area, soaking in the rays, running my hands through the red sand and gently touching the strange plants that don't exist in my wet and wild Northwest corner of the country.
As amazing as this all sounds (it is eye candy for sure) my body is struggling to adapt.  There is a place in my head that is strong and vibrant, ready to take on the world!  However, after a 12 hour day of traveling (bus, plane and car) the energy was drained out of me, such as a fish without water.  There are aches and pains, nausea and dizziness that linger. 
The first treatment yesterday left me in awe as to how many layers built up to guard the pain, the trauma, and the fears that lie within.  When asked what emotions were coming up for me, the immediate response was vulnerability.  I don't want to go into details about this feeling but it is there, very real and brings on a sense of fear and weakness.
As I lay here today, trying to do what is always my most difficult challenge, being content with stillness, I picked up my friend's hardcover (with no reference on the front as to what it was). I opened it only to discover it was Brene Brown's book Daring Greatly.  I almost felt too exhausted to read but the first few pages gave me an understanding as to why I was drawn to it.  Brown's writing just happens to be on her extensive study on vulnerability and shame.  Though I've watched her TED Talks (highly recommend!), never have I read her books.  On page 2 she writes, "Vulnerability is not weakness, and the uncertainty, risk, and emotional exposure we face every day are not optional.  Our only choice is a question of engagement....We must walk into the arena, whatever it may be with courage and the willingness to engage."

Hmmm...

This is when my blogging mind kicked in and I couldn't help but share.  Here is the quote I wanted to share most, page 1, from a speech by Theodore Roosevelt.  It defines, in my opinion, how we need to live, and why I continue to explore ways to heal, by daring greatly with hope and perseverance.

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the door of deeds could have done them better.
The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again,
because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause;
who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly...."

Another Adventure Begins

At this time tomorrow I will have arrived in Arizona.  Not exactly looking forward to a 7 am flight but I am excited about landing in 80 degree sunshine!  This trip has been in the works for a few months now and thanks to some amazing friends, family and Kona bike company we raised enough money to make it happen.  Many, many thanks to all of you!!!

As you know, I have had gastroparesis for quite a long time now and if you have kept up with my journey over the years you also know how many things I've tried to overcome it.  Some have helped, some not, but each one has given me the strength to continue exploring and not give up.  I have traveled to the east coast to visit John's Hopkins when the SIBO was out of control and wanted expert opinions, which I got (and got rid of!).  I've gone through 2 j-tubes and now TPN.  Over the summer I met with an ND in Vancouver and made weekly visits up there to see an acupuncturist, both who helped someone cure her GP.  Years of yoga, meditation and qi gong classes have helped to ground me during tough times.  Exploring diet modifications, especially a low-FODMAP, helps to keep severe bloating and nausea at bay.  But, in the end, there is still pain and dysmotility, and I'm still on TPN to survive.

Over the summer a dear friend of mine, who also lives in Bellingham, has GP and a j-tube, drastically improved her ability to eat through a treatment called myofascial release, also known as MFR.  A physical or massage therapist trained in this, works with the fascia in the body, connective tissue that surrounds muscles, vessels and nerves.  Throughout our lives this tissue can bind up and cause areas in the body to not be as fluid as they should be, particularly when exposed to physical and/or emotional trauma.
In the future I would like to do an interview with a specialist to provide more detailed information on how this works.  I'm not an expert in MFR and just beginning to understand it.  What I do know is that it has helped many people overcome painful and debilitating health challenges.  I have been working with a practitioner in town over the last couple of months and next I will be seeing a PT who has 20 years experience with clients who travel from all over the country to see her.  I'm doing a 2 week intensive and hoping for the best.


Now just because others have improved doesn't guarantee the same will happen for me.  I mean, don't get me wrong, I'm crossing my fingers (and toes!) that a miracle happens.  If anything, I just want to be able to eat enough to not rely on TPN.  If it doesn't happen during this trip, I will continue to receive treatment and give it more time.  At the very least, however, it will be a wonderful trip no matter what.  Sedona is known for it's beauty and healing energy.  I look forward and feel blessed to have this chance to get away, go deeper within myself and find content in life's simple pleasures.

That said, I will not be posting on this blog or FB until I return.  It's a perfect chance to "disconnect" from the virtual world and take advantage of the time away.  My notebooks are packed though and I fully plan on journaling.  Wish me luck and wellness and I can't wait to share my adventure with you when I return!

Thank you for your support and allowing me to share this journey with you.