My Story: From the Oley Regional Conference in Dallas, Texas

Hi everyone!

I hope that you enjoyed the week of Feeding Tube Awareness that I shared on a couple weeks ago. Sorry for the lack of post last week! I was gearing up for the Oley conference in Dallas that I had the honor of sharing my story at last Saturday!

I wanted to come here to share a bit on that and give those who didn’t get a chance to attend, the opportunity to watch the recording of my talk if they wanted to, which you’ll find below!

First of all, I got to reconnect with my sweet pediatric GI doctor! It was a total surprise until I asked a friend if he knew of any Dallas Children’s Hospital doctors, then he told me mine was going to be there the very next day! Was an absolute joy to see her after all these years!Dr. C

I also got to see my precious friend, Stephanie from Washington state! I missed her so! We get to see one another about once a year at conferences, but it feels like we never go very long without seeing one another cause we are definitely phone best pals all the days of the year! steph

And then we both stayed with the amazing Nurse Pat! It was truly a week with some of my most favorite humans. Dang, I wish I’d gotten a photo with everyone at the conference!nurse pat

It was a great weekend, and I got to meet lots of fun new friends too!

Now for the “Consumer Story” talk I did on the morning of the conference!

Unfortunately, I do not have very stellar video editing skills, and it’s just off of my iPhone, so it’s not a very exciting looking video (though I did somehow manage to make it have a cute thumbnail which was a new thing I learned!) I’ll also share the slides I was going through just as part of this blog post, so you’ll have to flip through as you listen to the audio if you want to! Maybe one day I’ll learn some video editing, who knows! But for now, here’s what I’ve got!

p.s. I whisper at the very beginning, but don’t worry, I don’t whisper the entire time, ha!

Here’s the slides if you’d like to follow along! (It’s going to probably go way faster than I’m talking.. So press pause if you want to!)

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That’s a wrap! I hope you enjoyed it. I really didn’t expect as many tears as there were, but that’s okay. I’m all about being real about those emotions, but sometimes forget to give myself that freedom.

Thanks so much for hanging out here! ❤

Feeding Tube Awareness Week Feature-Liz+Lauren+Cat

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!1

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?

A: I have relied on tube feeds as 100% of my nutrition for 19 years now, since I was 18 months old. Anything I’ve been able to have orally has merely been for pleasure. Continue reading “Feeding Tube Awareness Week Feature-Liz+Lauren+Cat”

Photographing a Wedding & A Thank You to My Body

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!Thompson Wedding-Paul8701Web

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!Thompson Wedding-Paul9534Web

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”

My 15 Reasons to go to the Oley Conference

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.

They put on several conferences throughout the year, but their big annual one is the hot topic for discussion today.  While I’ve only been to one conference in 2016, it was absolutely life changing and I cannot wait for this summer’s conference in Memphis, Tennessee.  Here are my top fifteen reasons you should go to the Oley Annual Conference this June.
Print Continue reading “My 15 Reasons to go to the Oley Conference”

My Story Part Eighteen: The one where I get my life changing G-tube

Hi everyone!  This is the last post of this “My Story” series.  Thank you all for your support in my telling of this story, it means the world to me.  I know it’s hard with this being a chronological story and a blog posting it backwards.  But I’ve made a list of links on this page and this page that will help guide you through them in the correct order!

I am so excited to get to this part of the story!  This is where things finally start to look up and it makes me so happy.

My Story Part 18 2
This obviously isn’t me in the hospital! Just me being happy! (Wouldn’t it be amazing if hospitals were as cute as this place though?!)

Just a recap, I’m still hanging out in the hospital from the same visit as the end of Part 17!

After being in and out of the hospital and getting tube after tube shoved down my nose to drain my stomach, we all knew something had to give.  One morning, my doctor came in and asked what I thought about having a draining G-tube placed.  She knew that had been the initial plan at Mayo Clinic and that it didn’t end up working out due to my anatomy, but she was thinking about asking a surgeon if he would be so kind to place it for me. Continue reading “My Story Part Eighteen: The one where I get my life changing G-tube”