#sciawarenessmonth

The title of this is probably a lie. More likely than not, they did teach you this fun topic. But they probably covered it for 5 seconds with little emphasis or it was in your weekly reading that you didn’t do. Anyways, I bet 85% of you with a medical background don’t remember this.

Those of you without a medical background should read this anyways so that you can save my life if something happens (NBD, just a hero saving lives) or impress all of your friends whenever you solve the “crime” on Investigation Discovery within the first 10 minutes of the show. Seriously guys. They made an entire HOUR episode of a CRIME show for this medical “mystery”.

It’s not a mystery. You just have to stop being a beotch for a minute, realize that maybe you don’t know everything and listen to the person telling you there’s a problem. I’m looking at you, Nurse Ratched.

It’s called Autonomic Dysreflexia and it’s here to f your day up. Big time. Any time there is a “problem” (problem in quotes because they are not usually big problems. Scroll to the bottom to see a list of things my body recognizes as deadly threats) below the level of cervical and high T injuries, the body tries to fix it by pulling the blood away from the problem area. And the blood goes to your head. You’ll stroke out and die if you don’t fix it and fix it fast. Don’t believe me? Google it. Or listen to this story.

Sooo, when you’re paralyzed it’s so much more than not being able to walk. Everything gets AFU including your bladder. Imagine my 14 year old face whenever they told me I would have to be catheterized multiple times a day. You’re sticking what where?! That’s a thing? I can feel everything, but my hands are paralyzed too so I couldn’t do it myself. What an awful, crabby time. Fuck my life, right? But it’s cool because a few years after my injury I got this surgery called a Mitroffanoff and it gave me a ton of independence. It’s a little hole on my stomach that I can cath through so nobody has to be in my business. Bye Felicias

I’m cringing that I’m even sharing this but whatever. It is my reality now and most people have no idea what it’s like so maybe if they can understand life with a SCI (like having to stick a plastic tube into places things shouldn’t go in, ouch) they’ll find me a cure, right?

This story is taking forever. Sorry.

So I was at school in Boston. Sitting on my bed doing homework when I felt the urge to pee. This is a familiar feeling considering the gallons of coffee I drink. I try to put the catheter in and it won’t go in. Sometimes the bladder spasms because you’re trying to shove a foreign object into your body. It’s not having it. My life has so many opportunities for the “that’s what she said” joke, I know. So I give it a rest and calmly try again. Nothing. I’m slightly starting to panic because I know that a full bladder can kill me. Forrealsies. Death by urine. Not how I imagine dying.

I keep trying and nothing is happening. My suite mate, Mandy, was in her room. Both of my roommates were nursing majors. 70% of my school were nursing students, actually. Convenient? So when I say “I can’t pee” Mandy didn’t panic just calmly tried to help me figure it out. But I started getting a pretty bad headache, the biggest sign that you’re going dysreflexic, which made me a little more nervous. So I start making a game plan with Mandy about what to do if we can’t get the catheter in. I’m really feeling like shit so I texted my other roommate, Julia, who was at work on campus, saying I thought I was going dysreflexic. Immediately I get a panicked phone call.

Let me first explain– I have prepared alllll of my friends about autonomic dysreflexia. To the point where some of them are scared. Because they should be. This shit is super serious and all of my SCI drs have explained to me that while all medical professionals SHOULD know about autonomic dysreflexia, most do not. I have to be my own advocate. And if I for some reason am unconscious, then my friends and family are my advocates. And I’ll be damned if they make my death into an hour long murder mystery show and have autonomic dysreflexia be the cause. So everyone is afraid of it and knows it’s an emergency.

The next explanation, which is the part that ALWAYS makes me laugh. Julia. She is one of my best friends from college, since freshman year. We are both very Type A people. Julia is more outward with her tendencies while I try to keep mine underwrap (everyone who really knows me is probably laughing saying my psychotic tendencies are not underwrap at all. F you guys). It also makes it easier for me to relax whenever I know someone is worrying about the situation to a degree that I would “worry” or as I like to say “think through every outcome”. What a sick and twisted friendship hahah love you Julia. But whenever something big is going on with my health (or I guess anything in my life) Julia knows better than to come to me at her usual level of freaked outness. She calls me, calmly but clearly panicking asking why I was going dysreflexic and I fill her in. Immediately she says she’s leaving work and coming to the hospital with us. I know this makes me a terrible person, but the thought of Julia power walking in her Danskos with her big backpack full of nursing books across campus always makes me giggle. Not just because it’s Julia. I’d laugh at anyone.

Julia finds me and Mandy in the kitchen. Calmly gathering my stuff but also in a “hurry tf up I’m dying” manor. By the time we get from the kitchen to my car, a 10 second walk, I am in excruciating pain. I let out a shriek before we get in the car and we go. Thankfully, the nearest hospital was only 5-7 min away. But as I rush into the ER lobby I am screaming.

Another side note. I have a pretty high tolerance for pain. I’ve had serious surgeries, procedures, conditions etc (rods in my neck, tubes in my chest, liters of fluid in my lungs, ungodly sized needles in me etc) and have powered through without making a scene in front of strangers. Medical professionals, yes, but strangers? No. They ask what your pain on a scale of 1-10 is. 0 being no pain, 10 being the worst pain in your life. I’ve never said 10. I’m saving it for the worst (I know, like The Fault in Our Stars, but seriously I did this way before Hazel Grace. And hopefully I’ll never use my 10 on a boy). But on this day, the pain was a 9.

So here I am in this small ER screaming from pain like a woman in labor. I can’t explain exactly what the pain was like but I seriously was wishing my head would pop off. They take me back immediately to triage, probably because I’m causing a scene.

Calmly while gritting my teeth from pain I say to the nurse “I have a cervical SCI. I’m having an episode of autonomic dysreflexia, meaning my body thinks there is an emergency and is pulling all of the blood to my head, because my bladder is full and the catheter won’t go in through my Mitroffanoff. I just need to be catheterized ‘normally’. My blood pressure is rising giving me this awful headache. My baseline blood pressure is like 98/50. Usually low”

Nurse 1: “okay honey” takes vitals, blood pressure 188/111 “oh wow you don’t usually have high blood pressure do you?” Me: “no! I’m going dysreflexic. Please cath me!”

They take me back and nurse 2, an older nurse, starts telling me to calm down. With attitude, she tells me that I’m just “having anxiety because I have a UTI”. Anxiety. A UTI.......

..........

Are you f'ing kidding me?! ANXIETY?! YOU’RE GIVING ME ANXIETY, LADY!

Immediately I panic. I’m surrounded by people, that for some reason, don’t believe me when I tell them I’m having a serious medical emergency. Idk if it’s because I’m young, pride, stereotyping, or past experiences, but most people never believe me or are surprised whenever I know things about my body. I can list all of the medications I take (close to 20) dosages, spellings, surgeries and all of my medical history. Shouldn’t everyone be able to do that? It’s seriously insulting whenever medical professionals look to my parents for these answers or don’t listen to me whenever I’m telling them there’s an issue. I can almost guarantee that if my parents were in the ED with me, this nurse never would have patronized me like that. Ain’t that some shit?

I honestly don’t even remember being cathed, but I remember the “coming down” feeling. And I remember being PISSED at that nurse. I did my job. I have cared for my body. An emergency came up and I have informed you with everything I know and now it is your job (because you have voluntarily signed up to be an ED nurse) to help me.

Want to hear something funny? I didn’t even have a UTI that day. Just good old fashioned Autonomic Dysreflexia

I think back to that day in horror. I’ve had SO many health professionals treat me that way--as a case, not a person and think they know everything about everything. I’ve also had SO many health professionals treat me as thoroughly and with as much care as they would a family member. All it takes is one “bad seed” to ruin it. If someone hadn’t stepped up and helped me that day, I would not be here bitching about this nurse, but most importantly I wouldn’t be here informing you of this condition. When choosing what type of nurse, dr, grocery clerk, friend, human you want to be, choose to be one that listens.

I guess you could push and say spinal cord injuries are rare? But they are not Benjamin Button rare that Emergency Department nurses/Dr’s should give me a blank stare when I tell them I’m having an episode of Autonomic Dysreflexia (lol “dysreflexia” isn’t even recognized as a word in Chrome. It keeps underlining it). Help a sister out and share this to raise awareness.

Here’s a list of things that have either caused me to go AD in the past or is given as a warning::

Full bladder/bowels<<or issues with bladder/bowels

Tight clothing/shoes tied too tightly

Menstrual cycle

Sexual activity

Cuts/burns (including sunburn) below the level of injury

Broken bones below the level of injury

Pressure from an object below the level of injury (I started going dysreflexic the other night from pressure from my shoe while standing in the standing frame)

Having fun<<just kidding

Aside from Autonomic Dysreflexia trying to kill me, it’s pretty cool that my body still tries to warn me when there’s a problem.

If I go dysreflexic in your presence, here’s how to help

Help find the irritant 

Eliminate whatever is stimulating my body

If you can’t eliminate it, take me to the hospital. If you can, leave me sitting up until I feel better.

If we can’t get to a hospital, there’s a medicine in my backpack that you can give me. HOWEVER, it drops my blood pressure dangerously low. So we still need to go to the hospital. --If no hospital is nearby, pray for me!

Anyways, now that I’ve hopefully scared you I’m going to go. Here’s another article with a bunch of medical jargon to check out if you want to!