Story about Superior Mesenteric Artery Syndrome , Asthma, Dysautonomia / POTS, Malignant hyperthermia, Cardiomyopathy, Attention Deficit Hyperactivity Disorder, Occipital Neuralgia, Migraine, Ehlers Danlos, Mastocytosis and MCAS, Crohn's disease, Alopecia.

Undiagnosed Warrior

Apr 19, 2017

By: Nikki


Hello, everyone. Thank you so much for visiting this page. I started my blog, Undiagnosed Warrior, in March of 2015 shortly after receiving acceptance to one of the major research hospitals in Denver, Colorado after I had written them a letter, begging for help. This was my way of documenting my journey to diagnosis.

I had been suffering from both a chronic and mysterious disease almost my entire life. At various times during the course of my illness, I turned to the medical community for answers. No doctor could ever explain why I had been so sick on and off for so long. I’d go from one specialist to another, hoping to secure a diagnosis or some insight as to why my body chose to betray me – but those answers never came.

ALONG THE WAY, I STARTED TO NOTICE A TREND. 

When my primary care doctor had no idea what to do with me, I’d get sent to a specialist. They’d only order a handful of labs and/or tests (if any at all). Inevitably, my tests always came back normal. The doctor would then give up after only a few visits because whatever I had did not provide them with an easy diagnosis and, eventually, I’d get turned away. Instead of getting the answers I had searched so desperately for, they placed the blame me. 

_“It must be anxiety or depression.”_

_“I think she’s just trying to get out of school”_

_“She’s simply being lazy.”_

_“She’s being overly dramatic. It can’t hurt THAT bad.”_

_“Maybe she wants attention.”_

_“She’s must be looking for drugs”_

“It’s all in her head”

I WAS BEING VICTIM SHAMED BY MY OWN DOCTORS.

It happened when my parents took me to get help as a young child; again when I was a teenager; during another period in my early twenties; and now finally, over the last five years for which I had been actively searching for a diagnosis.

I wasn’t going to let this happen again.

I knew when I wrote that letter to the hospital, with my health rapidly declining, that this was going to be my last chance to find a diagnosis. Obviously, I didn’t want to mess this up, so I had to do research, find good doctors, and learn to navigate the health system strategically – all on my own. I also knew that I had to share my journey because what I had experienced with the medical system over the years was clearly wrong and I refuse to let anyone else to be left behind or forgotten like I had been. 

PLEASE FOLLOW ME AS I NAVIGATE THROUGH OUR COUNTRY’S BROKEN HEALTHCARE SYSTEM TO FIND MY MEDICAL DIAGNOSIS.

On my website (UndiagnosedWarrior.wordpress.com), you will find some of my most personal and intimate stories regarding my journey to diagnosis. I’ll also share many of the tips and tricks I’ve learned along the way. I’ll post research articles and spread awareness for a variety of conditions. I’ll offer support and motivation for living with a chronic illness. Most importantly – if you need me, I’ll be here to either listen or help in whatever way I can. Please reach out to me by messaging the  https://www.facebook.com/undiagnosedwarrior or email me at [email protected].

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