Continuing on with our Honor Patients, today hear from Hannah Setzer. Read below about how she has incorporated daily movement and exercise safely into her life, and what that means to her.
My name is Hannah and I am totally feeding tube fed. I was born with a rare medical condition that affects my lymphatic system. There are literally thousands of cysts in my head and neck that block my airway, so I breathe through a tracheostomy tube, and my esophagus. I’ve had well over 50 surgeries in my 28 years, but thankfully no more anytime soon!
Growing up my family (parents and three brothers) never treated me any differently because I had a medical condition. I played sports (terribly!), had friends, was the cutest little Girl Scout you ever saw, and spent my days running around my neighborhood. From preschool to the end of middle school I had a nurse with me all day every day in my school classrooms. I had surgeries frequently too, but beyond that my life felt very normal. My family and friends never treated me as special because of how I looked or how I ate.
My life is awesome and remarkably normal. I went to college, took a job across the country, lived in Brazil for 8 months, got my Masters degree in Social Work, got married, embarked on a crazy quest for intentional movement, and became a foster parent! I have done all these things and lived every day with a feeding tube that has a mind of its own, breathing every breath through a tracheostomy tube, and having not so impeccable speech.
As I mentioned, growing up I played sports, in college I played ultimate Frisbee every single day on the quad, I’ve run several half marathons, and now I’m over 530 days into intentional movement. On January 1, 2018 I decided to move my body for 30 days. There was no schedule, no plan, and no goal in mind besides intentional movement every day. Thirty days came and went and quickly turned into a goal of 100, then 365, and at the time of writing this I’m on day 534 of movement. It looks different every day, I still don’t have too much of a plan. I’ve done several 30 day programs, a few 90 day programs, and am in the middle of a weight lifting plan currently. I’ve had dental surgery and multiple stomach bugs throughout the past year and a half but have always managed to at least walk to the end of the block and back. I do what I am able to do. Not having a schedule or agenda or physique goals allows me to be intentional every day and do what I am capable of doing that day. No two days look the same. I try to be kind to my body and listen as much as I can do what I need daily.
Despite having a feeding tube and tracheostomy tube for 28 years they are far from perfect. Some days my feeding tube is totally fine and doesn’t leak at all, some days it acts like a fountain and is very painful, it’s always a surprise!! For the first twenty four years of my life I was completely dependent on Pedia Sure and Ensure for all my nutritional needs. Five years ago I switched to a blended real food diet and my life totally changed. I am so much more healthy than ever before, get sick so less often, and have more energy to do all my favorite, and not favorite things (talking to you leg day)!
There has not been a day in the past 534 days that I have regretted moving my body. Even when I had no energy from the worst stomach bug of my life I felt better walking to the end of my street and back. I’m not a doctor or scientist so I won’t try to tell you the science behind how good movement is for you, but I can tell you that I am stronger, more disciplined, more joyful, more intentional, and more dedicated in all areas of my life due to creating the habit of intentional movement every day. I know we have lots of friends who are physically unable to move their bodies and I don’t think they are excluded from intentional living. We could all benefit from 30 minutes a day of intentional meditation, prayer, and gratitude. These are things that will radically change our lives if we incorporate them daily. I’d encourage you to try!! I’d love to hear about your experiences over on my Instagram @feedingtube.fitness !
Yesterday, Hannah celebrated a huge milestone of 600 days of movement! Check out her instagram to see just how she celebrated! Congrats Hannah! You rock! -from all of us here at the Pact Blog