My Story Part Seventeen: The one where I meet Anthony <3

Welcome back!  This is the second to last part of this story.  Thanks so much for sticking around for it!  I’m curious, what would you like to see me write next?  While I have ideas, I am ultimately here in hopes of helping others.  Are you currently having issues with how to tape your feeding tube and looking for a possible new way?  Are you scheduled for a procedure in the hospital and want a list of ideas for things to take with you to make it feel more like home?  Or maybe you aren’t a patient and have a question about something I’ve already mentioned here and would like for me to elaborate on it?  I’d love to hear from you!

Let’s jump back in!

The second trip to Mayo Clinic was just as busy as the first!  There were lots of lab draws and running around to see various doctors, but Aunt Retta and I had fun with it!

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We found a fun restaurant and I won a pizza or something! I mostly just really like this photo.

Continue reading “My Story Part Seventeen: The one where I meet Anthony <3”

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?

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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.

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

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My Story Part Fifteen: The one where we went to Mayo Clinic

Hey everyone! Welcome back to the story right after I got back home from over two months in California!

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Getting to see my sweet friends back home was the best!

Getting home was going pretty great!  I had developed a new method to help myself feel more human – I called it “chewing and spitting.”  As gross and weird as this may sound, eating is such a huge part of the human experience (just try watching television for a short time without watching commercials related to food or drink).  My doctors have always agreed and cheered me on when I have found unconventional ways to feel as human as possible.

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Got to go to my sweet friend, Tiffany’s bridal shower as her Maid of Honor!

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My Story Part Fourteen: The one where I ended up back at UCSD

Welcome back!  Anthony and I only had a 21 hour day yesterday!  With flight delays and all kinds of stuff, we didn’t end up getting home to Fayetteville until about 1:00 AM!  Is this time change messing with anyone else?  Also, as I’m starting to realize how long this story is (how in the world are we already up to Part 14!?)  I’m thinking I might start sprinkling in some other posts, just for fun!  What do you guys think?

As for today, we’ll continue with this story!

Four days of being home, eating, doing life and feeling pretty decent went by.  Then, I had my first bad night.  It might have been a combination of me “over-doing it,” and eating too much – I couldn’t tell you exactly what triggered it.  But I had my first bad night outside of the hospital. Four days was a pretty good run at it though!

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Cute little succulents I’d gotten from the nursery.

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My Story Part Thirteen: The one where things started to look up

Wow! What a fun-filled weekend! We are currently waiting at the airport, as our flight plans didn’t work out as they were set to. But that’s okay! I’ve been wanting to have some spare minutes to get on here and post the next part! So here we go!

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Livin’ that Kleenex in the nose life!

I left you with the exciting news that I was starting on clear liquids.  In this post, I have to begin by telling you that 3 days later, suction had to be hooked up again.  While my gut was moving some, my stomach was not emptying.  Things were so backed up that nausea got the best of me and I had to go back to nothing by mouth.  I was bummed.  This was not how things had ever gone.  In a typical hospital visit, I would have been on to mashed potatoes and chicken fried steak!  But this time, I could only dream of eating those things.

Continue reading “My Story Part Thirteen: The one where things started to look up”