Sunday, September 2, 2012

The Ebb & Flow of Acceptance

Does time seem to go by as fast for you as it has for me?  It's hard to believe a whole year has passed since having my feeding tube placed last August.  What is even harder to believe (and accept) is still a part of my life.  Thinking back prior to the procedure, when I was struggling so much to get down enough food in the day and pounds were dropping quickly, this option of "feeding" seemed unreal.  However, reality struck and acceptance sunk in that I could no longer avoid an alternative form of nourishment.  The doctors insisted it would only be short term, 3-6 months at most, until my weight became steady again.

Well, I learned a lot in that 6 months, realizing how necessary it was to slow down, make self-care a priority and do the best with what I had.  The first 2 months were a bit tough but I quickly gained my weight, energy and nourishment back.  In time, I was able to start eating more solid foods and exercising again without negative consequences.  When the new year arrived, 2012, I began playing around with decreasing the feeding intake and increasing food.  It became only half my calories for the day and having a variety of foods, GP friendly of course, became a joy again.  I was so excited that I began studying to be a health coach, ready to get back into the field of wellness after having to drop my studies in acupuncture a year prior due to being ill.
I thought for sure by spring, summer at the absolute latest, the tube would be out.  After all, I was doing everything right as far as eating well, exercising, and stress management.  Most important, I felt pretty darn good, given the circumstances.  Fast forward late spring, though, symptoms started getting worse, including major bloating and fullness, despite following a low-FODMAP diet.  Because I have previously written about this, to summarize, I tested positive for SIBO and ended up seeing a specialist in August at Johns Hopkins to learn everything I could.
Whenever I tried going without the feeding, within days my weight dropped, despite eating well throughout the day.  Most likely this is do to the overgrowth of bacteria in my small intestine and the inability to absorb most foods.  This, combined with a very restricted diet in addition to the GP one, leaves me with no choice but to continue the tube feeding for now.
The past month has been not just physically but mentally challenging as it seemed I took many steps back as opposed to getting better like I had imagined.  I was filled with anger and sadness.  Here I am, coaching others, including some without GP, watching them progress, yet I have to rely on a feeding tube?  I felt as though I failed and could no longer be someone to guide and support others, after years of studying nutrition and living a healthy life.
I kept this mostly to myself, not wanting others to see me as weak.  Then one evening, between you, me (and the entire world of blog readers!) I broke down.  My poor husband was there to witness the crying and the "why me."  As always, he did not judge me and did his best to support me.  It's difficult to share this but I want everyone to know that it happens to the best of us, you are not alone.
Once it was out (gave myself a good hour), I took a deep breath and began reflecting on the life I have. There are so many things to be grateful for.  The next day I received a quarterly newsletter from the Oley Foundation, organization that supports those on enteral feeding.  It was filled with stories of others who completely rely on this form of nutrition.  Some are married and have children, others work and travel and there are those who are just young children who don't even know the difference.  Suddenly my perspective shifted.  Having this tube cannot define me and the sooner I accept that, the quicker I can move on with my life.  I want to continue working and it brings me joy to do so, why should this stop me?!  Everyone living with gastroparesis is very unique, probably the most difficult part about treating it.  Accepting and understanding that my situation is no different, and knowing that I am doing my best to manage it, is far from failure, it is a triumph. That goes for each and everyone out there, making every effort to stay positive and live well.  Though you can't always change the things that cause you discomfort (physical and emotional), with a little effort, you can change your reactions and responses to them.

One more quick note.  As some of you know, this past year I have been working on a book about my journey with GP, originally titled "In the Kitchen with Gastroparesis."  There is still much to say about incorporating nourishing foods but the focus has shifted a bit.  Nourishment also happens outside the kitchen.  Look forward to techniques for acceptance in addition to what I've learned over the years in acupuncture, yoga, meditation, support and most recently raising awareness.  More details to come in the fall.

Thank you everyone who has continued to support this blog and our GP community :)

1 comment:

  1. Stephanie, Once again, I can not thank you enough for all that you have done for me! As you know, I was very skeptical about seeing another gastro dr., but thanks to your encouragement and support of going with me today, I really feel like my 'dream team' is in place! The ebbs and flows that we go thru are hard enough and even though I have accepted this gp, having the support of you and Dr. McC really makes me feel 'good'! We are all in this battle together, and I will continue to fight on a daily basis to do the best I can : )
    Thank you for continually educating and supporting me!