Tuesday, December 17, 2013
Living My Best "One Day at a Time" Update
It's been awhile since my last post in November, following the big trip to AZ. After 2 weeks of feeling better, less pain, more hunger, my body did a 180 and took a deep dip into a flare. This is the kind of information that is really hard to share, avoiding any loss of hope for anyone reading. Therefore, I push it off patiently waiting for a change. Right now however, this is part of the ebb and flow of gastroparesis and only posting when life is good is just not really fair to myself or you.
Does this mean that I'm giving up on a cure, on this set back taking me down for good? Absolutely not. Living with no hope for tomorrow is not living at all and can only lead down a path of self-destruction. That may sound extreme but to be honest, there have been days when I don't want to get out of bed. When the thought of being around those I love who are able to work, eat and play is unbearable, knowing how much it hurts them to see me in pain. The thought of my friends and family worrying about me, missing the active and healthy person I once was, is almost worse than my own dealing with it myself sometimes.
Instead I'm taking it one day at a time, focused on making the best out of the situation. What the future holds, I can't tell you. The PICC line used for TPN is looking like it is at its end so I do have to think about a possible alternative such as a port or Hickman. Both are lines placed in the chest area and each have pros vs. cons to consider. Either way it's not something I ever thought would be necessary but I have to be thankful I have this option to keep my weight up and stable.
Below are ideas of what my days have been looking like lately and what I'm doing to continue living as well as possible...
-Stretch before I even get out of bed with a movement such as cat pose. Notice how animals do this upon waking, I think they are on to something!
-Start the morning with some warm tea or fresh juice (a favorite is spinach, cucumber and pineapple) mixed with some l-glutamine powder to assist in gut repair. This is especially important for anyone on TPN like myself, which overtime can impact gut permeability (more about one of the many studies here).
-I just started a tai chi/qi gong video serious that feels good and grounding in the morning that I ordered through my friend/GP sister Angela, a Team Beachbody Coach. She has found a lot of joy and relief through exercise on her journey (visit her site for more). I also enjoy a simple yoga video or class if I'm up to it 1-2 days a week.
-Spending less time aimlessly perusing on Facebook and more time on creative outlets such as painting (T got me a Bob Ross kit for my birthday recently and I'm learning to paint happy trees, lol!), knitting, making gifts for the holidays, and creating websites for friends starting a business.
-Sipping homemade broth and soups to help keep me nourished.
-Using my heating pad for comfort when I don't feel great, especially nice when it's time to really wind down and relax the body. Look for a giveaway here soon!
-Always staying in touch with family and friends. Without their support I don't know where I would be. Even if it's just a text or quick phone call. Otherwise, spending time watching movies with them or chatting over tea can bring such a sense of joy and love.
-Reading a book, How Can You Not Laugh at This, Reclaim Your Health with Humor, Creativity and Grit by Carla Ulbrich. Though she lived through a series of severe autoimmune disorders, there is much to relate to in the medical world and her sense of humor towards it all had me laughing out loud.
She quotes Herodotus..."If a man insisted on being serious and never allowed himself a bit of fun and relaxation, he would go mad or become unstable without knowing it."
-Cuddling with my animals, 2 playful dogs and a furry cat. Animals are incredible healing creatures and know nothing but love!
-Occasionally going in for a myofascial or acupuncture treatment, which at this point is not curing me but still feels incredible and provides some release of tension in the body.
-And as always, two very important tips for the day - Chew, Chew Chew (yes, even purees!) / Breathe In and Breathe Out, repeat.