"I'll take 'Things That Could Have Been Prevented' for 400 Alex."

  \Post 09\ 12.20.2025

Hello everyone,

I hope you’re all doing well. As well as you can be considering – you know.


I am currently writing this post from my hospital bed at a major research institution. Unfortunately, I have experienced more mistreatment, more medical gaslighting, and even worse, a doctor performing the wrong procedure. For some odd reason I keep finding myself in the same position: coming in for a simple procedure and ending up having an extended hospital stay.

Let me set the scene:

    It’s 4AM and I’m of course not sleeping and watching YouTube videos about random things. I realize it’s time to take my medication     and peel myself off my big blue sofa to hobble my way into the kitchen. I remove my daily pill organizer from my cabinet, place a few of the nearly a dozen medications into my pill grinder and get down to performing my daily exercise. I make it through all the pills, measure out the liquid medications, inhale my nasal spray into each nostril, and pause my tube feeding to push my meds. Funny story – I fill a syringe with water to flush, screw it to my NJ tube tip and push. Nothing happens. I obviously try again – nothing happens. I then use all my body weight against the counter and attempt to push the syringe harder until my fingers are hurting and my arms are cramping, but NOTHING HAPPENS.

Now, imagine the most gnarly eye-roll you have ever seen and the deepest grimace you’ve ever seen someone make. Then, I want you to imagine being able to see the immense amount of frustration enter my body, starting from my feet all the way to the top of my head, traveling to the ends of the strands of my hair. I let out the loudest huff (that I regret instantly because my abdomen cannot take that kind of activity 😅), turn off my feeding pump after it’s incessant alarming due to inactivity, and hobble to the bathroom to take the world’s hottest shower I can muster to try to ease my feeding tube into compliance and de-stress a little.

Twenty minutes later, I’m dressed and packed to go to the worst place on earth: THE HOSPITAL. But, guess who cannot drive themselves to the hospital because they have no way to correct a blood sugar drop since their tube decided to be a big baby! That’s correct – this girl right here. I press the last three numbers I want to on my phone and my finger hovers over the green call button, trembling like it’s 40 degrees below zero in my apartment.

“911, what’s the address of your emergency?”

I wanted to say, “Hell.”

 

Long story short - I almost D.I.E.D. 

 

My palliative care doctor asked me for a HUG when I discharged 😔.


Now, let's take a look at the  things that could have been prevented checklist:

I had an idea of what was going to happen because it always happens. Every. Single. Time. I have to tell my care team what to do, I have to fight for nurses not to give me medications I’m allergic to (which is clearly documented in my medical record), and demonstrate that not all people are the same. And maybe it’s just me, but I certainly do not want to be the person coming up with my own care plan while I’m barely able to stay conscious long enough to have a conversation. It forces me to come to terms, again, with the fact that clinicians often don’t listen to patients, especially in the emergency setting (it’s probably because they’re so short staffed they are expected to see 167464785 patients in 15 minutes… 🙄).



Here’s an example: 

I can’t have dextrose 50% in water unless it is a continuous infusion, or I will experience severe reactive hypoglycemia and have seizures. Even though this is detailed in my patient chart, I will have a doctor fight me tooth and nail saying “that’s impossible”, and “you can’t be allergic to sugar”, and “that’s the standard protocol for hypoglycemia”, blah blah blah. While I can acknowledge I do not have what is considered a “true” sugar allergy, I do have a severe, life-threatening reaction to dextrose 50% in water if it is not a continuous infusion.

Annnnnd if you experience severe enough hypoglycemia, guess what happens… you go into a coma. 

 

Imagine me, Miss "You’re a Difficult Case", Miss "Come Check This Out, You’ll Never See This Again In Your Career", Miss "You’re a Medical Mystery", in a coma because my medical team didn’t know what reactive hypoglycemia was or the risks that come with idiopathic hypoglycemia. The team would most likely end my life.

 

So - how did I make it through?     I HAD TO ADVOCATE FOR MYSELF.

Let me tell ya, it was so difficult and I was terrified beyond belief. My concerns are either ignored or brought up when it is too late. Psychiatrist after psychiatrist kept recommending more antidepressants and sedating medications while I was actively struggling to remain conscious.

 

I used the little energy I had to tell the psychiatrist and the rest of my care team -

“Times like these, I regret not going through with hospice. I’m exhausted. I don’t want you to keep recommending medications to ‘keep me calm’. I don’t want to be kept calm. I want my team to take my concerns seriously. I want quality care! I deserve quality care. Do you know what it’s like for almost every routine procedure to turn into a week-long hospital stay because your care team doesn’t listen? Or what it’s like for a clinician to google your condition right in front of you, then claim they are an expert? What it’s like to be dragged by armed security while experiencing extreme pain and having a seizure? Then, to have palliative care tell you they can’t help with your now exacerbated pain because you ‘don’t have cancer’? Do you all think this is okay? I would appreciate it if all of you left my room immediately.”

 

I cried - silent, heavy tears. I cried for myself. I cried for patients experiencing the same thing. I cried for all the times my family thought I wouldn’t make it. And I cried because the healthcare system is built to continue to push both doctors AND patients to their breaking points. It’s not fair. It’s not sustainable. 

 

 

But why did I say all of this? Why do I always try to make my concerns known? 

 

I'll leave you with this as an answer:

 

   "If you are silent about your pain, they'll kill you and say you enjoyed it". 

        - Zora Neale Hurston

 

 

 

But if every hospital stay and medical interaction is a fight, who is going to be in my corner when I need to take a break? Who is going to do all the fighting when my breathing is shallow and I’m toeing the line of unconsciousness?




WHEN DO I GET THE CHANCE TO RECOVER?!




Well - when my support system steps in. My close friends made sure to advocate for me when the exhaustion took over and I couldn’t do it myself; when the pain was too great and all I could do was lay in silence. They were there to listen, observe, and, most of all, step in when they noticed something wasn’t right.

I have learned the hard way to always have someone with you at appointments or in the hospital, either in-person or virtually. Don’t be like me. Contact your loved ones and tell them you need them. It might be scary to ask, but that’s okay; they’ll be happy you even asked. And if none of them are available, call your local advocacy office. There are so many people willing to help. 

And when you finally escape get out of the hospital, take some time to yourself - we all know there's a rotating door into your room when you’re in the hospital.




Well… now to the important questions:

Do I sue the hospital? Or, do I ask for guaranteed acceptance and free medical school?

 

 

You deserve the world and then some ✨❤️