Welcome to Feeding Tube Awareness Week-Pretty Couch Potato Style! Over the course of this week, I’ll be sharing fifteen of my tubie friends’ stories.
The range stories are all very different from each person. Some have been on tube feeds for nearly their entire lives, some just started on tube feeds, and some don’t even use their feeding tubes for feeding (HAYYYY, das me!)
Let’s start here with my friend Liz! You can find her on Instagram @liz_81712!
Q: What diagnosis led to you needing a feeding tube?
A: The underlying diagnosis that caused me to require tube feeding is mitochondrial disease.
Q: How many years have you had a tube or been on tube feeds?
Hi! I wanted to take a quick break from Tubie Pad Features this week to share about a really cool thing my body helped me do a couple weekends ago! I got to photograph a wedding!
My friend Paul, who was my teammate in capturing this wedding, was really kind and took some shots of me (or shots I was accidentally in, ha!) so I thought I’d share those throughout this post, along with some of the photos I captured from the wedding day at the end!
If you know much about weddings, you know they’re pretty stressful. Add in being the photographer of a wedding, I’ll just be honest and say the stress is very high. Being all places at once, making sure to get all of the very important moments (which is honestly all of them, ha!) and just the general stress on your body to run around for an entire day, it’s a lot! Continue reading “Photographing a Wedding & A Thank You to My Body”→
Are you familiar with the Oley Foundation? If not, and you rely on nutrition support in any way, they’re a great organization to get to know. I love the way they state who they are on their website, “…the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.” Learn more about Oley here.
Welcome back! Alright, so the J-tube is placed! What else could ever go wrong?
While getting used to my new normal with my J-tube, I had a lot of trouble. It was great in the sense that it helped my tummy stay a little flatter than it had been and it made it to where I was able to eat a pretty full liquid and soft food diet without too much trouble. But it was so hard to learn how to tape it just right so it didn’t hurt and to find cute clothes that were comfortable and didn’t make it obvious that it was there.
Hey everyone! Welcome back to the story right after I got back home from over two months in California!
Getting home was going pretty great! I had developed a new method to help myself feel more human – I called it “chewing and spitting.” As gross and weird as this may sound, eating is such a huge part of the human experience (just try watching television for a short time without watching commercials related to food or drink). My doctors have always agreed and cheered me on when I have found unconventional ways to feel as human as possible.