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.

My Story Part Thirteen 3
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”

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.

My Story Part Sixteen: The one where the J-tube doesn’t work as planned

Welcome back!  Alright, so the J-tube is placed!  What else could ever go wrong?

My Story Part 16 30
I’d made it home in time from Mayo Clinic to stand by Tiffany’s side in her beautiful wedding! Photo by Cassie Loree

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.

My Story Part 16 32
I spent a lot of my free time crafting! I made this birdie cake topper for Tiffany’s wedding! Photo by Cassie Loree

Continue reading “My Story Part Sixteen: The one where the J-tube doesn’t work as planned”