Sunday, January 6, 2013

2012 - 2013: Re-cap and Update, Triumphs and Troubles

Reflecting back to January of 2012, it feels like a distant planet.  At this time last year, having become comfortable with the feeding tube, I was packing my bags and preparing to head south to Mexico for what turned out to be a fantastic getaway.  After returning, refreshed and renewed, I enrolled in the health coaching program at Institute for Integrative Nutrition.  The year flew by as I studied and began working with others looking to make healthy changes in their lives.  In addition, September kicked off the first annual Awareness Walk for Gastroparesis here in Bellingham, WA.  
That in itself was a job, rewarding for sure but wow, I have a whole new respect for fundraisers!  The year also brought many challenges, including a trip to Johns Hopkins in Baltimore (way on the other side of the country from WA!) to further understand SIBO and how to best deal with the new diagnosis.  After finally clearing that up in October, shortly there after tube troubles arose and, if you have read the recent updates, began a fast and furious downward slope with my health.  

Nearly a month has gone by since the J-tube was removed.  After dealing with so much pain and discomfort from the migrating of the tube and infection I had hoped having this foreign object slithering around in my belly would finally bring some relief and allow me to move on with a well-rounded GP diet.    Well, unfortunately, that is not the case and I'm finally coming to grips with it.  The thing is, just like many of you out there in a similar situation, while our minds, intentions and will power may be strong (even bullheaded sometimes!), the body just doesn't want to cooperate.  It's not because I have failed or because I am making bad choices, it just simply is.  

My health coaching services have been put aside while I take this on and I am here to share the experience with you, to not only update my readers, family and friends, but to hopefully inspire you to be strong in your own lives, now matter what boulders we may stumble upon this path.  
So, here are the most recent details.  In one month my weight has dropped about 10 pounds, something I could not afford to lose.  Everyday has become a struggle and I can honestly say I have never felt this "out of body" in my life.  There is a consistent sense of being lightheaded and dizzy, a hunger to eat but unable to get enough, and a once highly productive (sometimes too much) mind that now just wants to rest.  
Meeting with my primary care doctor yesterday is the moment it really hit me.  The sincere and desperate concern in his eyes, telling me something has to be done soon.  My appointment for a consult with the one of the best surgeons in town is not until next Tues, January 8th.  Until then, I'm set up to get IV fluids every other day just for some added volume.  If we cannot get the J-tube scheduled to be placed by the end of next week, depending on my status, the doctor wants to consider temporary TPN until then.  My heart dropped and still does every time I heard those letters together...T.P.N.  Because this is not something I'm willing to take my mind to right now, I'll hold off writing about that unless we get to that point.  I'm eating for goodness sakes!!!  Hot cereals with nut butter, nutrient dense soups, fish, chicken, eggs, smoothies (though not settling as well these days), and have even tried sips of Ensure/Boost, which really don't make me feel any better.
Okay, I hope that doesn't sound like I'm complaining, just more frustrated with the madness of GP and how quickly it can turn on us.  That said, I've had many, many good days in the past, here from others who are doing well, and have complete faith that this too shall pass.  
In the meantime, T has taken it upon himself to be the most loving caretaker and amazing soup maker!  I can smell the roasted vegetable puree with hints of ginger in the air so I must move on.  Thank you for allowing me to share and for the continued support our community provides.
Updates will post as things progress.  Hugs to you all :)


  1. Steph, Jonny and I are praying for you! (I'm one and the same Lora Howard from over at Green's Not
    Easy Family! LOL! Wells is my married name that I'm hoping I'll be able to legally drop Feb 1!) Please let me know if there is anything that I can do for you. I'm in TX so it will have to be able to be done "long distance". Keep you head up!!!

  2. I'm praying for you. Thank you for keeping us updated. I hope you feel better soon.

  3. You continue to be an inspiration to all of us! Thank you for your honesty when dealing with the struggles and frustrations of GP. Your courage is amazing and gives me strength every day to keep fighting, for all of us! HUGS!!!!

  4. Thanks for the encouragement and prayers. That alone makes going through this easier :)