Bra Review: Negative Underwear

Listen, I’ve been agonizing over posting this review for weeks now. Guess why? It’s a mesh and see-through bra.

It’s got me thinking, do celebrities and models agonize over showing their bodies too? Is it just me? I’m not really sure. But there’s also something really liberating about it, and I’m hopeful will help you feel some body freedom too.

What I’ve done here, is placed photos of me in the bra (with censored stickers) below the “read more” line, so if you are not comfortable seeing those photos, please do not expand this post.

Now, the bra! I freaking love this bra. Truly.

It’s the Sieve Non-Wire Bra in Buff (they have it in Peach and Black as well) from Negative Underwear.negative1

(WARNING! This is the place where you don’t want to click if you don’t want to see this bra on me!) Continue reading “Bra Review: Negative Underwear”

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 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?”