A chronic illness blog, full of zest and vintage specs
I'm a 25 year old, vintage loving, wife, and puppy mama, living in Northwest Arkansas. I've lived my day to day on IV nutrition for the past 11 years due to a crazy booger of an illness called chronic intestinal pseudo-obstruction. I love sharing my story and hearing yours.
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!
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?
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.)
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.
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.
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 ❤
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.)I 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.) Continue reading “What Does My Weekly Dressing Change Look Like?”→
Long time no write, y’all. Sorry about that. I had a very very rough few months from August till November. It was all one little pesky infection that made it’s way to my central line and into my lungs after not being tended to for so long. It was very unfortunate and included three admissions (does not include additional ER visits) to my local hospital, and one final hoorah at my big hospital in Dallas after the local doctors really made a mess of it and somehow didn’t catch that it was an infection. Even with unclear cultures they deemed “contaminated” about 883 times, persistent yet random fevers (even up to the 103 range) and all kinds of symptoms that yelled infection.
But that’s all said and done and I am cleared from my blood and lung infections after a month of IV antibiotics and a new central line placement. And I am back!
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!
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!
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”→