My Story [Part 1]

When I was 18 years old I got really sick. It was sudden and fast and confusing. It felt like I was walking down a normal, predictable path and then the road all of a sudden crumbled in front of me, creating a chasm between what was and what was supposed to be. 

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, having a bad cold.  I had never had any serious illness before and had no concept of what could be happening to me.

After a long day of playing tennis in the state finals I began to feel a pain in the middle of my back that got worse when I took deep breaths in and out.  Over the past few weeks my fevers had begun to progress and went through cycles of shivers and chills that shook my whole body, high spiking fevers up to 104 degrees (F), followed by drenching sweats.

These fevers came in cycles and started around 8pm at night and broke by morning.  I thought it was a horrible virus, and tried to rest and get over it.  I went to sleep early one evening and woke up in the middle of the night with an excruciating pain from my left shoulder down to my tailbone.  My back had seized up into a knot and the slightest breath in or out made me scream in pain. I grabbed my phone next to my bed and called my parents down the hall in the middle of the night so I could tell them that something was really wrong and needed help.

I was rushed me to the nearest hospital, and there they found I had a pulmonary embolism or a blood clot that had traveled to the arteries in my lungs that had caused my severe pain and shortness of breath.  This was likely due to the hormonal birth control I had just started taking a few months before and widespread inflammation - creating a “perfect storm” for inflammation.

I was started on a blood thinner to get rid of the clot and given morphine for the pain. In addition to this clot, I still had these strange, vague, flu-like symptoms and none of the experts were sure how this all fit together. I was tested for every infectious disease under the sun from West Nile Virus to Dengue Fever. Initially, the doctors diagnosed me with Rheumatoid Arthritis (RA) (this diagnosis has changed) and began treating me for an autoimmune disease that was attacking my body.

I was later diagnosed with something called Adult Onset Still’s Disease, but have had a few other diagnoses and have since learned that Lyme Disease was a big part of my symptoms as well. As anyone with autoimmunity or chronic illness knows, the inability to fit me into a nice and tidy box was also part of the difficulty.

I was discharged from the hospital three weeks later on high dose steroids which had stifled 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. 

Continue reading Part 2 of My Story here.