A Nurse's Experience with Chronic Autoimmune Disease

When I was 18-years-old, I got really sick. This sickness changed the course of my entire life. I was a healthy, active highschool student, playing tennis in the state tournament, when I started to feel vague, flu-like symptoms, accompanied by a low-grade fever. I attributed it to long hours playing tennis, being worn down from finals, and having a cold. I had never had any serious illness before this, so, I had no concept of what could be going on. 

“This sickness changed the course of my entire life.”

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One day, after a long day of playing tennis in the state finals, I began to feel pain in the middle of my back that worsened when I took a deep breath. Over the past few weeks, my fevers had begun to progress, including cycles of shivers and chills that shook my whole body. My fevers spiked high, up to 104° F, with drenching sweats. These fevers came on suddenly, starting around 8 PM and breaking by morning.

I thought it was just a horrible virus, and tried to rest and get over it. I went to bed early one evening and woke up in the middle of the night with an excruciating pain in my left shoulder that extended down to my tailbone. My back had seized up into a knot, and the slightest breath made me scream in pain. I grabbed my phone and called my parents, who were just down the hall so I could tell them that something was really wrong - I needed help.

I was rushed me to the nearest hospital, and there they found I had a pulmonary embolism (a blood clot) that had traveled to the arteries in my lungs. It was the cause of my severe pain and shortness of breath. I was started on a blood thinner, to get rid of the clot, and injected with morphine for the pain. Aside from the clot, I still had these strange flu-like symptoms, and none of the experts were sure how this all fit together.

I had a long battery of tests conducted over the course of 3 weeks. Finally, the doctors diagnosed me with Rheumatoid Arthritis (RA), an autoimmune condition. This diagnosis was later changed to Adult Onset Still’s Disease (AOSD), and even in the past few years, I’m still uncovering pieces to the puzzle that cause my immune system to respond this way, including chronic underlying infections like Epstein Barr Virus and Lyme. 

I was discharged from the hospital three weeks later on a high dose of steroids and medications that suppressed my immune system, which quieted my fevers. I wanted to get out in time to walk in my highschool graduation. Pictures of me on that day show someone glazed over with pain medications - a person I hardly recognize today. I was still trying to grasp what had happened to me, and had no idea of the obstacles that lay before me. My discharge from the hospital was only just the beginning of my journey in understanding how to live as a person with a chronic, autoimmune disease and incorporate that into my personal story. 

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“Pictures of me on that day show someone glazed over with pain medications - a person I hardly recognize today.”

I grew up under the assumption that if I had a health issue, I went to my doctor and she would give me a solution to fix the issue, and that was that.

What I’ve learned through my own personal illness experience and working as a registered nurse and functional nutrition coach is that the model of “one problem, one doctor, one solution” does not always serve us if we are dealing with chronic health issues that require a whole person approach to care. 1 in 2 Americans are dealing with a chronic health issue - that’s a pretty big group of people! 

When I was discharged from the hospital I went from doctor to doctor to follow up on what medications I needed to control my fevers. I was on low-dose chemotherapy drugs that were affecting my liver, and high-dose steroids that gave me anxiety and made my face puffy.  I was miserable and still unable to find the best treatment for me.

All of the healthcare professionals I went to were highly skilled in their field and I owe my life to them. They did not, however, seem to take me into account as a person, but rather categorized me into my disease. I looked to them to give me clues as to how to live my daily life, what to eat to nourish my body, or what other alternative therapies I could try to reduce stiffness in my body or decrease my stress and anxiety, but unfortunately, I never got any of this information.

This 15-year quest to find this information has taken me places I never would have imagined. It’s allowed me to find optimal, vibrant health for myself, and to discover my life’s passion in becoming a registered nurse and functional nutrition coach, which has allowed me to guide others to take control of their health through diet, lifestyle shifts, and, most importantly, personal empowerment.  

“This 15-year quest to find this information has taken me places I never would have imagined.”

Chronic illness is complex and to truly address it (and not just put a bandaid over symptoms) we have to look at all areas where there are imbalances in our lives, including what fuel we put in our bodies, how much sleep we are getting, how effectively we manage our stress, and what our environment or relationships look like.

If you are dealing with chronic illness right now and feeling like you aren’t getting better or getting the support you need, know that you have powerful medicine inside of you. there are many more tools in the toolkit, in addition to what conventional medicine has to offer, and sometimes it involves putting the pieces of the puzzle together, rather than having one magic bullet solution. 

Have questions for Nurse Christina? Reach out here.

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About Christina Tidwell, RN, MN, NC-BC

Christina Tidwell is a Registered Nurse, Board Certified Nurse Coach, Functional Nutrition Coach and the owner and founder of Live Well with Christina, a holistic health and nutrition coaching business specializing in serving clients with chronic autoimmune disease. She helps people take control of their health through diet, lifestyle shifts and personal empowerment. She is a dinner party enthusiast and fermented foods lover who just wants to eat, drink, and live well!
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