Nineteen Years of Dismissal Almost Killed Me
Diseases
Blood Disease, Gastrointestinal Disease, Immune Disease, Migraine, Rare Disease, Reproductive Disease
Issues and Challenges
Nicole has encountered: Invisible Illness
My Story
My story is complex and riddled with so many differing issues. Sadly, my story began in 2002, when my first pregnancy ended in a miscarriage at 3 months. Little did we know that the loss of that heartbeat was the start of a very long, 19 year journey to being properly diagnosed with Lupus (and some other fun disorders along the way).
At the time of that loss, we had no answers and no idea why our seemingly healthy, long awaited miracle after infertility treatments had passed away. After two more miscarriages that followed, our doctor finally ordered some blood work and found that my blood was thicker than it should be and at that point we made the decision to seek a specialist.
The specialist diagnosed me with antiphospholipid antibody syndrome, a blood clotting disorder, that was attacking my babies by clotting the blood in the placenta. Fast forward another three years of trying to conceive and 6 miscarriages later, our rainbow baby was born in July of 2005.
Shortly after her premature birth, I started developing really odd symptoms. Word recall, brain fog, extreme fatigue, migraines, chronic pain, joint pain, chronic vomiting, etc. In 2007 my primary physician noticed that my ANA (anti-nuclear antibodies), which detects autoimmune diseases, was extremely elevated. He suspected Lupus, but dismissed it completely due to another blood test that he felt needed to also be positive. He failed to see the entire picture of my symptoms and some how lacked the knowledge of how to actually diagnosis Lupus. At that time, he started sending me to different gastroenterologists for the vomiting (6 years later one doctor finally stopped calling it IBS and ran the appropriate tests that confirmed gastroparesis), an orthopedic doctor for cortizone injections in my knees for the pain, neurologist for the headaches, neuro-ophthalmologist for the double vision issues, and so on. Because of the Lupus diagnosis being dismissed, all these physicians were attempting to treat a symptom of an underlying problem without success.
Year after year I continued to go to him for help and eventually he began to think it was mental health issues or just in my head. I was young when it all started and had no idea how to advocate for myself or what different specialists were or how to get into one without my doctor referring me. In 2021, after a big move to a very sunny and hot state, I started noticing that I was waking up every single morning heavier than when I went to bed. I could feel the edema throughout my body getting worse and worse. It was putting a ton of pressure on my lungs and even walking up the stairs was difficult. Which is incredibly unusual for me as I had been an athlete and fit since I was a young child and up until that time. Being in a new state, I had still been working on finding a new care provider, but before I could, the edema got so bad (nearly 25lbs of edema on my very small, 5'2" frame - went from 127lbs to 154lbs ) that the entire left side of my face went numb one night while eating dinner. I literally thought I had a stroke and was beyond terrified. It was then that the doctor I saw took one look at me and said, you have Lupus. It was a dreaded diagnosis, but life saving at the same time.
The dismissal of a diagnosis for 19 years nearly cost me my life and has unfortunately been allowed to do damage on nearly every part of my body all of those years. I have an amazing doctor now, but still cannot maintain remission and am looking for new treatment options.
My Motivation and Inspiration
I have a few things that are my motivation and my inspiration. While on my own journey to figure out what was causing my symptoms, my daughter was also misdiagnosed and dismissed for months on end in 2014. At the age of 8, she was diagnosed with severe Crohn's disease. Her being misdiagnosed and then dismissed as nothing being wrong landed her in the hospital in a life threatening state with severe blood loss, kidneys failing, unresponsive and requiring an NG tube. No mother, child, person should ever be made to feel that their symptoms are not real, that they are in their head, and suffer the way we have. Negligence needs to stop, patients' voices need to be taken seriously, and physicians need to take the time to hear them and know it is ok to not have the answer, but to send them to the right specialists when they don't.
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