My name is Nikole and I am an autoimmune mess!
After experiencing the devastating loss of two consecutive full-term stillbirths due to being overlooked and undiagnosed, my view of the medical process and my role as a patient completely changed. Realizing the traditional role of the patient had utterly failed me, I went from being a passive, docile patient to a well informed and heavily engaged patient. The change in my role as a patient forced my doctor’s role to change as well as they scrambled to keep up with the peer-reviewed research and questions I brought before them.
Because of my determination to be a better patient and demands to be tested for the less common diseases, I was finally diagnosed with a rare disease that resulted in serious illness throughout my pregnancies and the death of my two babies.
Changing my outlook on what it meant to be a patient changed and saved my life. Without it, I would not have the best part of my life today, the two healthy sons I was finally able to deliver.
After this, I was subsequently diagnosed with Mixed Connective Tissue Disease, a combination of multiple autoimmune diseases. Mixed Connective Tissue Disease is really a nice medical label that means complete autoimmune mess. It is a mixture of all sorts of autoimmune diseases so I get to tangle with a little bit of a lot every day.
After the fight for a diagnosis, the last thing I thought I would have to do was fight for basic information, resources, and support concerning my disease. Yet, I became painfully aware of the lack of this for people whose diagnosis do not fall neatly into a singular category of autoimmune disease. There is a vital need for autoimmune disease to be given an umbrella-like covering to its sufferers. My combination of autoimmune disease’s has made me uniquely aware of the need for treating autoimmune disease as a class of disease.
I use this blog to share the information and ideas I’ve learned along this autoimmunity journey. I also want to share some comfort and companionship with others, who like me, find themselves overwhelmed and struggling to deal with it all. Take heart, you’ll find people just like you scrolling these pages in the middle of the night too! You are not alone, you can do this. We are 9-50million people, 100+ diseases, and we need 1 cure!
To learn more about why I started this blog and what it means to me read my post here.