The Story of Elway

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

brareview-1
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!)

This slideshow requires JavaScript.

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.)

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 ❤

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?”

What does TPN even look like?

HELLLOOOOO!

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!

bye
bye bye old Hickman 😦
new line new me
new line, new me

All I’ve got to say is thank goodness for good friends. Those who help you celebrate Halloween inpatient, play games with you, come to chat, and bring you a puppy to love on in the hospital! jojopuppy
Continue reading “What does TPN even look like?”