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.)

My Story Part Eleven 2
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 ❤

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”

Tubie Pad Feature: Bella Madalyn

Hi friends!

I am so excited to be back with another Tubie Pad Maker Feature this week!With Carrie0751Web

Just as a reminder, here’s a breakdown of what I’ll be sharing!

  • My personal thoughts on the maker’s Tubie Pads.
  • A bit of the maker’s story.
  • The materials they use and special features that sets each of them apart to help you find the right fit for you.
  • Lots of photos to hopefully help you get a full picture of what you are purchasing (on a human, front, back, etc.)
  • Price and where to find the Tubie Pads.
  • Lots of other nuggets of info depending on what each maker chooses to share!

This week I’ll be sharing and will be hearing from my new friend, Kaitlin Metheny of Tennessee, who started Bella Madalyn! She sent me some super precious floral tubie pads! Look how cute! And she picked them out herself! IMG_4489 Continue reading “Tubie Pad Feature: Bella Madalyn”

Couch Potato Poem

My church does this really fabulous thing every summer where we celebrate the ordinary time between the big holidays. There really isn’t a lot that happens through the church calendar between Easter and Christmas, and we recognize that lots of our lives are spent in this ordinary-ness. So we do things differently, and usually spend time getting to know one another better.

A couple years ago during Ordinary Time, each Sunday started with a poem or writing written by someone in the church. All totally different topics, but everyday ordinary topics. I shared this poem, and haven’t shared it anywhere else but with the group that was there on that particular Sunday, so I’d like to share it with you here today.

Some things have changed, but the ultimate message remains. I’d love for you to soak in some couch potato-ness after reading this and remember all the things your body does for you!

Couch Potato

Looking at me right now, you might not be able to see that the simple things like consuming enough calories to survive, or taking a shower are difficult for me.

You might not know that I have to put a weird rubbery sleeve over my arm before showering in order to keep my PICC safe from water.

Since it is my lifeline, the way I receive nutrition, I wouldn’t want it to get infected with scary water germs.

You might not even be able to tell that medical tape is a part of my daily wardrobe, or that I have two feeding tubes that I like to call my stomach piercings.

And that’s all okay.

Because these things are hidden.

But do you know what else is hidden, aside from our different hidden struggles and limitations?

Just how much LIVING our bodies are doing.

I love how Christy Beam, author of Miracles from Heaven, put it, our bodies are “like an orchestra with all the individual instruments playing together in perfect tune.”

Now, maybe my violin section is a little off.

And maybe your trumpets aren’t playing quite loud enough, or your sax player is just getting into their own groove while you have no say over what they are doing.

But let’s just take a moment to think about all of the things our bodies are doing for us right now.

Hearts pump-pump-pumping.

Lungs breathing. In, out, in, out.

Blood cells acting as a transit system and getting oxygen where it needs to go. Such busy streets.

Guts churning. Gurgling.

Eyelids kissing one another as they blink blink blink.

All the while, you’re just simply sitting.

It’s truly beautiful.

We all go through life thinking, oh I’ve got to get this done, I’ve got to do that, say this, go here, be there at 7:37, constantly going.

But we already are constantly going.

Even in just simply sitting.

And sometimes it is perfectly okay to be a pretty, or handsome, couch potato.