Sydney's Blog

2023 Recap

I can confidently say that 2023 was far better than I imagined.  There were lows: being hospitalized most of Feb/March, sepsis over the summer, MALS

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Capitol Crawl

The event unfolded on March 12, 1990, and stands as a powerful symbol of resilience, determination, and the fight for equal rights for individuals with

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Smart Pill Test

Six weeks ago, I did the smart pill test where you swallow a massive wireless ingestible capsule that records the motility at different points in

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Drives to School

Due to issues with turning my neck because of fusions/instability and neurological issues, I’m not yet able to drive myself to school. My house is

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2 Years Tube Fed

I was hoping that I would never have to make this post, but it’s officially been two years with a feeding tube. I’ve talked about

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PT Graduation

Monday was my last day of home health PT. Since I’ll be attending college this fall (as a day student), my insurance won’t cover home

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Biopsies

Biopsies With EDS, patients often have systemic reactions to micro-traumas that usually would not occur in other people. For example, in Utah, I had five

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Metrodora

​​If you have ever found yourself needing to see a highly specialized physician, you likely experienced months/years of waiting for that appointment. In my case,

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Disability in STEM

Disability representation in STEM is so so important. This summer I’ve had the opportunity to participate in the Norris lab, and I think that this

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C. Diff

Early afternoon on Monday, I was admitted for uncontrolled pain and fever. I had a great weekend spending time with my cousin and even felt

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Dislodged GJ Tube

While inpatient, a CT of my abdomen showed that my GJ tube migrated out of my stomach wall. The doctors weren’t sure what caused this.

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Sepsis Round 2

Thank you so much for the outpour of prayers and encouragement. The past week has been scary and chaotic. Last Thursday night (after a very

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Turning 19

18 did not treat me too kindly. One year ago today, on my 18th birthday, I was incapable of sitting upright due to severe symptoms

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Nurses’ Appreciation

Happy Nurses Appreciation Day!! Well, it is not actually Nurses Appreciation Day…but I truly believe we should all appreciate the vital role nurses play every

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GI Update 5/7/23

While I am making tremendous progress in almost all aspects of my health, here’s an update on the not so great aspect: my GI system.

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We Did It!

It’s with great excitement that I share with you that the $1.2M Operation Upright goal has been met and we will be able to bring

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Plot (PORT) Twist pt 2

Today I had an emergent port placement surgery because accessing my veins has become impossible.  I have always been a ‘tough stick’.  When the nurse

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Health Update 2/14

Last Wednesday, I was admitted to the hospital for pain control and hydration. After the celiac plexus block, the pain came back worse and with

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Celiac Plexus Block

I got a celiac plexus block! This was done endoscopically while under anesthesia. The goal of this procedure was to serve as a diagnostic tool

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Plot twist…

The past few days have been a whirlwind of doctor’s appointments, scans, and tests. My CT angiogram showed that my Superior Mesenteric Artery Syndrome (SMAS)

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Jinxed

So I jinxed myself. Someday I will learn not to get my hopes up so high and speak prematurely, but that day hasn’t come yet.

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hEDS Turns Heads at CNN

This week, an article was published on CNN discussing hypermobile EDS with the headline “This mysterious disease affects millions – why isn’t the medical profession

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Being Hopeful

I have been making some great progress over the past two months. Unfortunately, I have seen no improvement in my GI symptoms, but I’m going

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A Concert of Hope

As many of you know, “A Concert of Hope” was a fundraising event in support of Operation Upright that took place on November 6, 2022.

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Re-tethered

I’ve been putting off writing about this for a while now because I honestly prefer not thinking about the trauma associated with this hospital stay.

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What’s Next???

So, I get asked this question a lot. I mean I’ve been entirely bedbound since early December so it makes sense that people wonder what

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Brain Fog Blog

I know people can joke about brain fog, but I can personally say that it’s not only real but incredibly frustrating. Throughout the past two

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(A)PORT SHIP

Most of the time, I wish I could “abort” this body and hop into another one. But in full transparency, I just wanted to make

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They’re New Here

Remember how I mentioned doctors who are unfamiliar with your case can sometimes NOT believe what you’re telling them? Let’s revisit that topic since I

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Change of Plans

My most recent hospital visit left me with some anxiety. I have a “planner personality,” I want to know there is an actionable agenda in

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Ruptured

The first thing that happened was my stomach became very bloated. Then, I noticed that bile was seeping out of my J port down the

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Go. Stop. Wait.

Go. Stop. Wait.  That’s my cycle, I think I might trademark it. Maybe I’ll make it my new middle name. Just a thought. I have

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Tackling Covid-19

Two days after I got home from the hospital, I began to feel sicker than usual.  My every day consists of fluctuating symptoms, making it

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Mayo Clinic

My family and I had always wondered if we would get more answers regarding my health from a major institution. Overall, the Mayo Clinic is

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C5-C7 Fusion

Only five weeks after my tethered cord surgery, I was back in the OR. My nurse woke me up at 4:15 AM to prep for

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Deja Vu…

To add to the chaos, my family was in the process of moving during my hospital stay. My mom decided we should renovate the main

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December Decline

In November, I had my feeding tube removed and stayed with my Uncle Scotty and Aunt Rachel in Florida for a few weeks. During this

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