PTSD Live Talk

Last month I shared an update on my return to TPN, IV nutrition, due to severe weight loss, despite making huge strides in food intake and what we thought was a life beyond GP. Not only did this feel like a big, fat blow to my confidence and hope, but a physical and emotional roller coaster of once again accepting that my body does not function properly. Followed by hospital visits, procedures and once again managing daily medical intervention has been challenging to say the least. Enough to cause random panic attacks out of nowhere, fear of what might go wrong next and confusion about how to plan for the future. 

Why is this happening?
How did I get here? 
What can I possibly do?

Navigating the Holidays with GP

“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”
— Albert Schweitzer

There are times when we may feel like the world is falling apart, when our bodies cannot withstand the challenges they annoyingly present at the most inconvenient times, when our mind feels overwhelmed and exhausted.  It is during these times when finding gratitude and what to be thankful for, are absolutely necessary. 

The holidays can stir up a lot in our lives and perhaps that in itself is something to be grateful for. We are forced to step outside our routine, our comforts, and deal with more than we are used to dealing with. In the midst of all of this, we must also acknowledge what is good and find gratitude. As I'm sure you see, the internet is filled with tips and tricks for surviving the holidays, reducing stress, and of course, being thankful. It is also filled with food, food, and more food! Does that depress or inspire you? If you are someone who really struggles with eating then it can feel pretty isolating. So, let's talk about some ideas that may be helpful for you and those you love these coming weeks. 

Miracles from Heaven to Hollywood Part 2

Okay, so I took a tad long on getting back to this review to follow up with the first part of our Miracle trip.  I still can't believe this happened and so many projects have begun since then and well, 2 months later here we are!
Now, where did I leave off...

Oh yes, we were kicked out of the red carpet area.  No biggie, worth "getting lost." We headed inside the magnificent Arclight Theater and stepped aside to enjoy the people watching. As some of the cast members made their way through we were able to get a few photos with a couple of them before the movie began.

To the right is Kylie Rogers who stars as Anna Beam, the young girl who was sick with dysmotility. She is so sweet and adorable!

Alive with HPN: A Life to Adjust To and Making the Most of It

I would like to take a few minutes and talk about TPN, how it has affected my life, and most recently the work I do.

Not only is August Gastroparesis Awareness month (which we are currently raising funds for), but August 3-9 is HPN Awareness Week.  HPN, TPN, what is all of this you might ask?

Return from Sedona - The Power of Myofascial Release

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face." 
-Eleanor Roosevelt

It has been over a week now since my return from Sedona, where I took a chance at a therapy known as myofascial release.  If you haven't read the previous posts, this was an opportunity to explore a method of healing, which dramatically improved a dear friend's struggle with gastroparesis, amongst other health conditions.  Those of you who have been following me on this journey are probably wondering, "did it help, am I cured, can I eat normally again?"  I've even received messages that if indeed it did they would be on a plane ASAP, ready to get their own treatment.

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.

Hard to Believe? Lessons from Life of Pi

faith: confidence or trust in a person or thing, or a deity or in the doctrines or teachings of a religion.  It may also be belief that is not based on proof.  

-Wikipedia

It is a just a word right?  Letters put together to form some sort of meaning?  Often used during hardships, when no one, not friends or family, no medical practice or scientific studies, no midnight Google searches nor shared experiences can provide an answer to.  When there is no one left to ask, where do we turn?  For years I've been told to "have faith, things will work out, don't give up, you will get through this."  And though it gets old to hear, I have told myself this everyday, because there is just no other choice.  But until recently, I'm not sure I really and deeply thought about this word, these letters, the meaning of faith.  Today I have formed my own simple definition: to believe.

Gaining with TPN and Finding Purpose

It's actually happening...the numbers are going up, slowly but surely.  The last few days I have held a steady 95 lbs, up 2 lbs from when I started the TPN at 93.  What a strange and unusual feeling to have this happen without pushing myself to eat all day.  Before the flare with the tube troubles last fall, it was no problem to maintain the weight but once it drops, especially this low, it became an impossible and exhausting feat to get it back up.

Feeding Tube Awareness Week and TPN Week 1

Last year at this time I posted about my experience and success with the first feeding tube and how it changed my life.  What a year a difference makes!  Though the week is wrapping up, I want to again bring light to another Feeding Tube Awareness Week, 2013.  I've shared my own experiences with the j-tube over the last 1 1/2 years and though I'm not currently using the one I have, there are many other resources available to learn more.  These tubes have saved countless lives and provide essential nutrition and calories to those who cannot take enough in otherwise.

TPN - Next on the GP Bucket List

“When you have exhausted all possibilities, remember this - you haven't."

- Thomas A. Edison

Oh how the road blocks just keep on coming.  Lately, I'm being quite honest and open with you as I navigate this new path of uncertainty.  The journey has not changed...the story of my experience with gastroparesis and any ideas, inspiration and support for others along the way.  Even when it feels like walking in circles,  dizzy with frustrations, or possibly sliding backwards, I want to continue to share what is going on.