But, Did You Die?

  \Post 10\ 03.12.2026

Hello Everyone! I hope you're all doing well - as well as you can be considering... you know.

 

It's been a while. I feel like I'm always saying that when I post on here! I'm trying y'all; I created a posting schedule so I can be more organized and consistent when it comes to writing blogs.

You know what I've been focusing on with these blogs? LENGTH. Which is crazy, right? Not everyone wants to read a novel detailing my life. Sometimes, it's just good to get shit out there, have people read what they're looking for - an update! So, my new focus is on just creating and doing it freely; no pressure about length or anything, but focusing on the content of the blogs. I'm going to be working on something similar to my tiktoks. Oops, did I mention I post on tiktok consistently now? Well I do. My TikTok is where I share GRWMs and storytime content about the random things that happen to me as a chronic illness patient. I include the good, the bad, and the ugly - so there's something for everyone. Please follow me y'all! I'm trying to pay the bills with this haha Wait! I got a job! More about that in another blog post...

 

So... BACK TO YOUR REGULARLY SCHEDULED PROGRAMMING!

 

What HAS been going on you may ask? Well, I am currently writing this blog from my hospital bed, yet again. Only this time I've been in the hospital for a while. I'm talking a month. Yes...  A MONTH. 

Ya girl had her feeding tube placed. Then replaced. Then - replaced again... I had my feeding tube placed SIX DIFFERENT TIMES in less than 8 days. LET THAT SHIT SINK IN. Failure after failure and I end up in the hospital after the 4th try because my blood sugars (iykyk) kept trying to take me out... GI wanted to place a J-tube or a PEJ tube so I let them try - FAILED. Apparently, my intestines are like the freaking Rocky Mountains and are extremely difficult to navigate; full of twists, turns, weird angles... Turns out I have "the most challenging anatomy" my doctors have seen thus far in their careers. Oh how I love being so special...

What is a J-tube OR PEJ tube? How are these different from your current NJ tube?

 

Here, let me explain:

 

A J-tube (left) bypasses my nose completely and starts in the sight of most absorption in the intestine. It's a more permanent feeding tube that is a lot easier to place (generally speaking).
This makes it so the GI doctors don't have to navigate my challenging anatomy or place the tube incorrectly and claim they didn't.... This tube would make sure my malabsorption is less of an issue when planning how I can get better nutrition. AND THIS TUBE DOESN'T CLOG!!

However, this tube does not come without complications. If this tube comes out - I have to have it changed, QUICKLY. Why? Because there's a hole in my intestine and that introduces a high infection risk. 

 

 

At first, I loathed the idea of having a permanent tube... I would think, "this is only temporary - why do I need a permanent tube?" But here we are, several years later and now that I actually need it I can't get it. 

 My GI team asked several departments to help them place this new tube:

GI Surgery - they actually tried to place it but struggled, so they asked for help from other departments too.

Surgery - "this tube isn't going to cure her, and comes with too many complications... she's doing just fine with her inadequate nutrition status and continued weight loss and doctors placing the tube incorrectly over and over again." 

 Interventional Radiology - "Yes! Let's do it and place a nerve block for the pain. Chances are you may not actually need a feeding tube permanently when we're done!" 

                            ONE WEEK LATER... 

 Interventional Radiology - "So... turns out there's not enough literature to support us doing any procedures on you because you have multiple rare diseases and there is not enough literature about them period." 

So that's where I am now. Day number 28 in the hospital, one week in the ICU, and needing to go to an inpatient physical rehabilitation center.

Spoiler Alert  turns out these facilities don't accept patients with nasal feeding tubes...Imagine that. Me not having the J-tube placement is now affecting whether or not I can be discharged from the hospital. Apparently, everyone's "hands are tied" and there's "nothing else they can do".  

So I sit. And I wait. And I rot read books, play video games, Old Greg's Tavern, and AI Dungeon to pass the time while I slowly lose my strength and will to live.

And I keep advocating even though they ignore me or don't listen. You know why? Because my life and livelihood depend on it.✨

Anyway, that's the update! I got a new job and ended up in the hospital the day after I finished orientation. I truly hope I have a job after this... I love my job! Ten days per month and I can rest between shifts and go to doctors appointments and treatments freely.

Buut, if you all want to help out, I did start a GoFundMe. I know, I know. I hate it, but I need the help so why not? Alia's Go Fund Me 

I set up  a "buy me a coffee?" too. But I don't drink coffee so: Buy me a book or a game?

As usual - thank you for reading friends. You deserve the world and then some.✨

 

 

 -Alia xx