Share Your Rare: Rare Disease Day 2019

Hi all! It’s Rare Disease Day! A day where the rare disease community gathers and shares their stories, raises awareness, and maybe even paints their faces! I’ve gathered some answers from five of my rare disease friends. They all have very different diseases, but all require, or have required, TPN currently or at some point along their journey.

I’m excited to share a little snapshot into their lives, so let’s get to it!

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Q: What is your rare disease?

A: A myriad of multiple complex chronic illnesses involving Ehlers Danlos Syndrome (TNXB mutation), Factor V deficiency, autoimmune and connective tissue disease, Chronic Intestinal Pseudo Obstruction, and Gastroparesis.

Q: Can you give us a super short description of what this disease is?

A: These diseases impact every organ system in my body. The most severe complications have been periods of intestinal failure due to Chronic Intestinal Pseudo Obstruction; where my intestines do not absorb nutrients and cannot handle fluid or food moving through them. I had to have an ileostomy placed; which means my colon is unhooked and I have a bag where my small intestine empties its contents into. I have a central line where I have received my nutrition and fluids for three years. My joints dislocate frequently, my skin tears easily, and I have struggles with wound healing due to my EDS. I have autonomic dysfunction, which means that my body cannot regulate basic functions such as heart rate, blood pressure, temperature, and more. Continue reading “Share Your Rare: Rare Disease Day 2019”

Non-Mint Toothpaste Reviews

Hi! Several months ago I did a poll on Instagram asking if any others had issues with mint flavored toothpastes. Whether it be a taste preference, allergy, causing them to feel nauseous, and anything in between.

I’ve hated mint flavored toothpaste since I was a tiny child. I remember closing the bathroom door, running the water over my toothbrush and splashing water around to make it sound like I was brushing my teeth before going to school. Feeling pretty sorry for those who had to endure that breath… But listen, it made me wanna throw right up. The flavor and scent of mint makes me cringe, even at the thought of it.

Hence why I was a-ok to volunteer myself to test some other options available. Unfortunately there aren’t a ton. But I’ve rounded up five that I’d love to share with you today! These are in no particular order.

Let’s start with Colgate’s Strawberry Smash!jen day09887WebYes, this is intended for the younger crowd, but I pinky swear you that when I asked my dentist if she had any ideas for non-mint toothpastes, she suggested this one. And she also told me she uses it herself. So I felt okay including it here!

Taste: Sweet and artificial strawberry flavored candy-like. (I’m very into this.)

Texture: More gel-like than paste-like!

Convenience factor: Super easy! I bought this at Walmart, and could probably find it at most grocery stores.

How clean does it make my mouth feel: 3/5 stars

I like the flavor, and it doesn’t make me gag. So I give it 4/5 stars!

Here’s a link to Walmart’s listing for two 4.6 oz tubes for $7.32!

Next up, Schmidt’s Vanilla Chai Tooth+Mouth Paste! Continue reading “Non-Mint Toothpaste Reviews”

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!)

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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! ❤

Feeding Tube Awareness Week Features-Mellie+Allie+Kate

Hello! Happy last day of Feeding Tube Awareness Week! We are finishing off this week with three lovely tubie ladies who have shared amazing insights into their lives as humans with feeding tubes! Let’s not waste any time, welcome Miss Millie! You can find her on Instagram @thegirlwhocanteat where she shares more of her adventure!10

Q: What diagnosis led to you needing a feeding tube?

A: Gastroparesis

Q: How long have you been on tube feeds?

A: Around 5 years in total, I had to be on TPN for 2 years and even though at times it is a struggle with pain from the J feeds, I would much rather be a little more uncomfortable than to have to worry about infection constantly.

Q: What type of tube do you have?

A: I have a straight J-tube and also a G-tube that allows me to decompress air, etc.

Q: What would you love to share with someone new to tube feeding?

A: That no matter how hard things may be, remember the importance of your feeding-tube, being different isn’t bad. Continue reading “Feeding Tube Awareness Week Features-Mellie+Allie+Kate”

Feeding Tube Awareness Week Feature-Sara+Montana+Sarah

Hello! Welcome to day 4 of Feeding Tube Awareness Week! Feel like you’ve heard it all? Well I’ve got news for you! There’s always more to learn from each different tubie. We’ve all had such different experiences, even if they are the same medical device!

Today we start off with my friend Sara Grace! She has had a very different experience with feeding tubes, her’s did not go well and ended up failing. I love hearing her perspective so much. You can find her on Instagram @chronic_sgb!sara g!.png

Q: What diagnosis led to you needing a feeding tube?

A: hEDS, rumination and gastroparesis

Q: How long have you been tube fed?

A: J-tube duration was 2 months, TPN duration 8 months

Q: What type of tube did you have?

A: J-tube (long)

Q: What would you love to share with someone new to tube feeding?

A: Please listen to your body! Doctors may tell you that chronic debilitating site and muscle pain is normal for tube healing, but if the pain increases or doesn’t go away, tubes were not meant for you! (And that’s okay and NOT YOUR FAULT)

Q: How has your feeding tube helped to improve your life?

A: My feeding tube was supposed to be my saving grace, but instead it caused months of traumatizing and debilitating pain that has left me with scar tissue and ended up decreasing my motility further.

Q: What is a complication you’ve had that you never expected to happen with your tube?

I went to the Mayo clinic to have my feeding tube placed by the best, and none of the GI doctors on my team were aware of the potential complications that come from placing tubes in hEDS patients.  Having finally found a GI doc that specializes in EDS based gastroparesis, he was able to explain why it was that my tube failed.  After a barium swallow to confirm, he found that (due to EDS) my intestinal tract crumples at the bottom of my pelvis instead of staying in place when I sit/stand up or walk around.  This made my tube placement incredibly painful, as it was pinning my small bowel to my skin and just hanging there. Continue reading “Feeding Tube Awareness Week Feature-Sara+Montana+Sarah”