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! ❤

What Does My Weekly Dressing Change Look Like?

Hello again! As promised last week, I’ll be sharing photos documenting my dressing change process today!

To those not on therapy, what does this mean? It’s essentially clean up day. It’s taking the sticker part of my central line off, cleaning it, and re-dressing it (putting the sticker part back on!)

For those on therapy, my process is not the “norm,” but then, what is? Lots of us who have had central lines for many years become allergic to soaps, dressings, adhesives, and all kinds of things over time. Therefore, my dressing change might look completely different from yours! But guess what, we are all different and that’s what makes life fun 🙂

Understand that I say these things because it is terrifying to share these types of processes to the world because people attack things they do not know or think you do wrong. Maybe it looks like I’ve put my sterile gloves on wrong, laid something here wrong, but I promise I have a strong education. If you’d like to have a conversation about something, I absolutely welcome that. But please use kindness. I always say these things to protect myself, but I love sharing so that people can get a look into what this life looks like.

Of course, this is not me saying this is the one and only right way! This is just the way that has worked for me over the past 8 or so years. Never change your process without speaking with your infusion nurse or doctor who gives you instruction!

Anyway, let’s hop to it!

First and foremost, I put on some great music so that I can be entertained during the whole process. Once those sterile gloves go on, it better be a solid music selection on!

Then I wash my hands super duper well and dry them off with a clean towel or paper towel! This is what it looks like right before I start a dressing change (ha! I look so thrilled.)dressing change and tpn start03962webI open up my dressing change kit, put my mask on, then lay all of my supplies out all nice so that they are accessible and remain sterile for the change. ( I do not keep my sterile field sterile, I drop my sterile outside items into my dressing change kit tray. You will see my flush syringes on my sterile field, don’t freak out! I know they are not sterile, promise.)dressing change and tpn start03970webdressing change and tpn start03973webdressing change and tpn start03978webdressing change and tpn start03982web Continue reading “What Does My Weekly Dressing Change Look Like?”

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”

Why “We Need to Pull Your Line” Isn’t as Easy as it Sounds

I’ll warn you, this is going to be a long post (I know I’m long winded anyway!) But it’s important. It’s about advocating for yourself as a patient when a medical professional states they’d like to do something that you don’t feel comfortable with. It’s also about taking your central line, and the symptoms of possible line infection, very seriously.With Carrie0930Web Continue reading “Why “We Need to Pull Your Line” Isn’t as Easy as it Sounds”