Waves of change.

That night we learned about Still’s disease. More than I cared to learn. Part of me wished I remained in the dark about the whole thing. Still’s disease was a chronic disease characterized by high grade fevers, splenic enlargement, rashes and severe joint pain and swelling. Over time the joints fuse together, leaving its victims “still”.

The picture painted before me was not exactly how I pictured my life. There were no bright colors. There was no warm sunshine. I looked instead at the cool grey canvas and saw dark clouds moving in. I saw waves of change ahead and was unnerved as I couldn’t help but picture wheelchairs and handicapped signs.

“How had this become my life?”.

 I was frustrated by my own helplessness. My complete loss of control. My plans that had come to an abrupt halt. Deep down I knew I never really had control. Of any of it. Deep down I knew the one who had control. But he had been so quiet. He had let all of this happen. Everything was different now.

Everything was messy.

And everything was difficult.

A week passed and we returned to Dr. Arnold’s office. We returned to the waiting room scattered with frail elderly people with deformed knuckles, swollen knees and sore backs. I was still in disbelief that I was actually in the right office. I didn’t believe that the doctors in this office would have anything to offer me. Barely 21 years old. “No the doctors who took care of these patients, they knew what to do with the elderly.”

I was starting to wonder if there was a doctor who knew what to do with me. A few minutes passed and we were brought back to the exam room. I didn’t know it at the time, but I would leave this room different than when I came.

 I didn’t know that I was about to receive news that would change the course of my life.

 I didn’t know that everything would be different.

And I do mean everything.

Had I known what was waiting for me on the other side of that door, I can’t say that I wouldn’t have tried to run.

Had I known what I would encounter on the days ahead, I can’t say that I wouldn’t have turned fast in the opposite direction.

But we didn’t know. So we entered the exam room, as we had entered so many other exam rooms. Exhausted and hopelessly yearning for answers and relief.

As I boosted myself up on the exam table I noticed I could hear Dr. Arnold’s voice. “She must be with a patient in the next room.” I tried to listen but their voices were muffled, and I couldn’t make out their words. Seconds later I heard laughing. I hoped she would hurry. I was so uncomfortable, sitting on the table with the crinkled paper. I was annoyed by the loud crackling of paper each time I moved.  

Moments later Dr. Arnold entered the room. She carried with her a clipboard and a smile. She greeted us warmly and sat down on a nearby stool. She looked at me and began to tell us that I did not have Still’s disease. She went on to say that my lab work had come back.

She told me that my ESR had reached an all time high of 121 and that my body was “hemolyzing”, or killing off its own blood cells by causing them to burst. She told me I had a “positive ANA”.

I had no idea what any of this meant. It didn’t sound good. It only confirmed to me what my body had been screaming for months.

She told me I had “lupus”.