Wednesday, December 31, 2014

Another New Year - The Good, the Bad, and the Motivation to Get Through It All

"When it is obvious that the goals cannot be reached, don't adjust the goals, adjust the action steps."
-Confucius

Another year has passed and tomorrow we start again.  Around this time, at least in the last 8 years, I've said to myself, "This will be the year, I will find an answer, a way to finally feel better."  That is always the New Years resolution...feel better.  And then what immediately follows, "What if this is my best?  What if I can never eat normal again or get off nutrition support?"

It's human nature to compare ourselves to those around us.  I realized this during my first yoga class, my freshman year of college at Wichita State. Yoga with Flo - yes that was her name and that is exactly how she moved, even at the age of 70 (and she still teaches, my dad took her class at the YMCA!). She would always remind us we are exactly where we need to be at that moment.  "Wow, I'll never be able to fold forward like that", I thought.  A lifetime of tight hamstrings and bad posture made touching my toes seem impossible.  But it was through training of the breath and the mind, that whenever I so badly wanted to be as flexible or graceful or athletic as the person next to me, this was who I was and exactly where I needed to be.  Don't get me wrong, those thoughts creep in but I learned to acknowledge them and understand my own realistic determination.  Fast forward 5 years to a hot yoga studio in Bellingham, WA and it happened, my fingers actually wrapped around those wobbly, big toes and a bolt of accomplishment shot through my body.  

Though I long for the days of a yoga routine being life's biggest challenge, the memory reminds me of similar emotions we all go through.  When the future of wellness feels like asking for the moon and stars.  It seems incredibly impossible, unrealistic.  But I won't give up.  By that I mean I won't let the myriad of challenges stop me from dreaming and living the best I can.  


2014 was a crazy year.
  • The temporary PICC line in my arm became a more permanent central line in my chest.  I'll share more about what a daily routine on TPN looks like in the future.  For now, know that it takes time, patience, and being more careful with your body than you can ever imagine. 
  • I started a new job as a Nutrition Consumer Advocate for ThriveRx.  It's been an absolute blessing to work with others around the country and help to educate and support people also living on tube feeds and/or TPN.
  • For a short time in the spring I actually felt better but it was short lived.  Despite eating more, weaning down to 4 nights of TPN resulted in a near 10 lb weight loss.  Back to 6 days and maintaining. 
  • 3rd annual GP walk in September was a success, more GP'ers showed up than ever before!
  • Participated in the Bellingham Traverse on the kayak leg with my husband.  Challenging but after having so many procedures, tests, tubes and lines, I felt like anything was possible.  Days of sleeping followed this race but it was worth it.  
  • Traveled to California and Kansas to spend time with family, good and bad days but again, so worth the effort.
I continue to struggle with severe pain at times, bloating, chronic constipation, fatigue, dizziness, and the ability to eat enough.  To most people (nearly everyone) this is mostly invisible, so on the days I'm not strong enough to handle it or I turn down invitations, trust me, it's me not you.*
Balancing the bad with the good keeps me going and what I suggest to you as well.  Find what brings you joy, even in the smallest of things.  Short walks, time with friends and family, helping others, big goofy dogs, learning to accept help, good books and movies, they all bring me enough joy to make it through the day.  

As far as resolutions go, and I always say this, but I really do want to write more, both here and one day in a book.  So much to share but motivation and routine is the key. 

Hope to see more of you in 2015 and wishing everyone a "better," healthier, happier year.  

-Stephanie


*Added Thoughts - January 1st, 2015

This post was written the morning of New Years Eve.  With plans to join good friends to bring in 2015, I ended up having to take my own advice about turning down invitations.  It actually started with T not having a voice post Seahawks game so it wasn't just me this time!  However, not wanting to disappoint the people I love is probably the hardest part about backing out.  My stomach took a dive in the afternoon, draining any energy to get dazzled up for a party.  Following 2 days plus the morning of feeling pretty good, it's so hard to explain the sudden change (even we don't get this).   My request is that people understand how challenging it can be when not feeling well to not only socialize but to also be around food and/or drinks.
Missing out is upsetting to say the least but we made the best out of it, cuddled with the pups, made some tea and watched How I Met Your Mother for some laughs.  I was in bed by 11pm but T came in and for a midnight kiss and opened the shades so I could see the giant explosion of colorful fireworks right outside our window!
Resting today and again, looking forward to better days ahead for myself and all the friends I have out there who can relate to this life.
-Stephanie