Brittani Renee'

Confessions of a Chronically-ill Entrepreneur.

Diagnosis: Crohn's Disease, Dress Syndrome, Lupus, Cancer.

In 2015 just two weeks after my first Graduate School classes, I was lying in the ICU at Redlands Community Hospital preparing to die. To date, it's the hardest thing I've ever survived. Almost---dying. Existing with knowing I've been given a second chance, is both inspirational and terrifying.

Sorry, I'm doing that thing where I skip very important parts of the story. Let's go back to the beginning. Ok not the real beginning, but the beginning of how I left my Graduate seminar class at Pepperdine University to wind up two itches from meeting the Grimm Reaper in the flesh lol. 

I remember it like it was yesterday but yet it's all still so foggy (brain fog). Sometimes I still can't believe I made it through. I had been in the ICU 11 days when my Doctor walked in as I was talking to my grandpa eating a burrito from my favorite local Mexican shop. He had the "my puppy just died" face, a facial expression I've come to recognize from the medical types over the last year, that almost always means bad news is pending. 

A piercing silence spread over the room as he opened his mouth, trying to steady himself for what I'm sure he'd said plenty of times, "the results are back from your lab test".  "There's nothing more we can do, but we will make you very comfortable. You won't feel anything". All I remember thinking was "I guess I'm having a bad day". Ha ha. I didn't cry. I was just stunned. My grandpa isn't the type to show emotion but that day, tears rolled down his face. 

I had been diagnosed with a rare disease called Dress Syndrome, an Autoimmune Deficiency complication. Certain medicines cause my body to systematically shut down until eventually my heart gives out and I die. Dress Syndrome has a 10-20% mortality rate and a whopping 2-to-8 week latency period. I had been given Sulfasalazine to treat my recently confirmed diagnosis of severe Crohn's Disease. Little did any of us know that a war was ragging in my body and I wasn't on the winning side of it. 

My liver was the first to begin it's shut down process, my enzymes were in the 5,000's when they should have been under 30. My bilirubin rose to 7, when it should have been under 1. My kidney's began to improperly function making using the bathroom incredibly painful. I ended up on Oxygen as I always felt a shortness of breath. While those are all the very real internal problems, the scariest was watching my skin peel from my body. From the top of my head to the bottom of my toes my skin slothed off, slowly exposing my raw flesh. Doctors and visitors were forced to wear protective gear to keep me from the common germs found outside my very sterile room. 

Somehow with the faith of a mustard seed and the sheer will to survive, I came through. My organs stop shutting down. They didn't immediately go back to perfect working condition but I stopped getting worse. Upon stabilizing, I was transferred from the ICU to an inpatient rehabilitation facility so I could relearn to walk and live in my new condition. 

I'm a former athlete so the mere thought of being permanently bound to a wheelchair and depending on others for my mobility honestly devastated me. Not that there is anything wrong with being in a wheelchair especially considering my alternative at the time was death. It's just the mental and emotional adjustment that comes with accepting the capricious nature of life that takes time. 

Honestly, even today after I spent months in rehab hearing everything from "you will never walk again'--to-- "it is all your mind", it's still an adjustment. With the help of wonderfully amazing Physical & Occupational Therapists I learned to take care of myself and eventually graduate to loftstrand crutches. I was released from inpatient rehab only to attend daily outpatient rehab treatment. 

Today I walk on my own. I walk a little slower. I walk a little more careful. And I sometimes have Myoclonis tremors that force me to reach for anything nearest me to stabilize myself until it passes, but I walk. I tire more easily from short distances, but I walk. 

I am not the Brittani I once was, I'm a stronger version. A better more empathetic, more compassionate version. Everyday I miss Whom I used to be, merely because I took for granted the freedoms I had. But today I live my life knowing I survived. I have to take almost 30 pills a day and pray none of these medicines trigger my Dress Syndrome, but I live with the purpose of ensuring other Chronic-illness Patient Warrior's know they are not alone. 

I am not perfect nor am I a shinning example of positivity, but I have vowed to allow my smile to change the world rather than it to change my smile. 

I may not go on to live the life I imagined when I first started at Pepperdine before being diagnosed, but I will live my life championing for those Warrior's just like me who had no choosing in being a Life Warrior but still greet each day with a grateful heart. 

We understand that, though it is hard, it is a struggle, some days good, and some days bad, we get to live another day. For that alone is worth its weight in gold and because of my illnesses I will never ever take that for granted again.  

xo britt