The Story of Elway

I missed National Puppy Day due to travel, but I’m still going to share Elway’s adoption story!

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Photo by Claudia Young

It was April 25, 2015, Anthony and I had talked about wanting a pup together for about a year. I honestly don’t remember the catalyst that led us to the shelter that day, but I’m so dang glad it happened the way that it did.

We had just moved into our first apartment that was just ours, and we were so excited to make it our own and bring a new love in to join us. elway 1

Continue reading “The Story of Elway”

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! ❤

On Accepting That Getting Off TPN Isn’t My Biggest Goal

It seems to me that one of the biggest goals for everyone surrounding a TPN dependent individual is to get them off of the therapy. I even had a doctor I had never met before come into an exam room and the first thing he said to me was, “Alright, we will be stopping your TPN.” Needless to say, I broke up with that doctor because he did not understand my reality (and turns out pretty much no doctor in NW Arkansas does, hence why I still travel to Dallas for my care!) Anyway, while this is an amazing goal for lots of people who experience the need for parenteral nutrition at some point in their life, this is not always the case. And I’m here to tell you that that’s okay (even though I still struggle with accepting this myself every single day.)

I began my venture with IV nutrition support at 13 years old; not long after receiving my diagnosis of Chronic Intestinal Pseudo-Obstruction. At that point, my biggest goal with every doctor’s visit was to cut out one more day per week. At this time, this made total sense for my situation. I was still able to consume foods and maintain my weight and the days slowly dwindled down to 3 days per week.

For years I was able to maintain a somewhat healthy body on this regimen. But when my doctor asked if I’d like to see how I would do without it, things went downhill quickly. (The aftermath of that below.)

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Lukaza and I at her house!

If you had asked me then, I would have said I was doing amazing! I was off TPN! It’s all I’d ever wanted and it was my goal all along, right? I was doing great!

I wasn’t minding what the scale said. I wasn’t minding how my body felt. I wasn’t minding that there were days I could barely sit myself up out of bed. None of that mattered.

I made it about nine months without TPN before I found myself in the midst of the longest hospital stay of my entire life while on vacation in California. I was stuck inside of a La Jolla hospital for two full months. I had really gotten myself into rough shape. All because I was priding myself of being free from what I’d felt I needed to get away from for so many years. There, I was told I needed to get back on it. And this time, I was unable to consume food by mouth. My condition had worsened and I was unable to tolerate even the simplest of foods.

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Livin’ that Kleenex in the nose life!

So I started all over; seven days of week of TPN. And you know what? That was five years ago, and I haven’t dwindled one single day off of my regimen.

And you know what else? It’s gonna be okay! Because I am the healthiest and happiest I have been since I was a child. TPN gives me the energy I need to thrive, and that’s exactly what I feel like I’m doing!

I have a wonderful team who makes my TPN to where it’s perfect for me and keeping me as healthy as possible. I am not surrounded by clinicians who try to pressure me to do things that could hinder my quality of life. They understand my disease state and can see that my body is doing exactly what it needs to do.jen day00112web

Of course there are severe risks with a therapy as invasive as IV nutrition, but this cannot discount the full life it has given me and many of my friends. It is possible to live a healthy and fulfilling life on TPN, and I am so thankful for that every single day.

Another of course, if you are able and working to get off of TPN therapy, that is AMAZING news. This post is for those of us struggling with the reality that the day we are off TPN may never come, and coming to terms with the life it does allow us to have ❤

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”