Numb.

The next few weeks passed at an even slower pace. It felt like the days on the calendar had stopped for me while the rest of the world marched on. I saw my parents come to and from work. Cards from friends at college slowly began to fade.  I began to acknowledge a deeper sense of losing control of my body, my plans and my life in general. I knew I was in too deep and there was no way I could ‘will’ myself out of this.  

As time passed the pain worsened; and my weakness progressed. The daily fevers persisted, and with that came a profound loss of appetite. I had always thought those who ‘lost their appetite’ simply didn’t feel like eating. I figured if they just ate more it would come back. Simple solution. The next few months proved not to be so simple. 

Food had lost its taste. All food. The very smell of it was nauseating, and putting food on my palate was like introducing foreign inedible objects to my mouth. The thought of eating was repulsive. This was devastating to my parents, particularly my mom who begged and pleaded with me to eat. She made me eggs and toast. She made me protein shakes. Anything she could think of to get me to eat. I choked down what I could, but I usually felt full after three bites or so.

Weight began to fall off me. This was not a good thing for the girl, too skinny and too tall. I lifted up my shirt in the mirror and could see my rib cage protruding. I looked down at my thighs and knew I had lost muscle mass, as they began to look more like my forearms than my thighs. The weight loss scared me. I knew I didn’t have it to lose. 

The next day we returned to the infectious disease doctor’s office.  I sat in the exam room waiting, weak and frail. At that point I didn’t care what the results were. All I wanted to do was go back home to bed. I hurt. Everything hurt. 

A heavy set woman in pink scrubs came in first and put a blood pressure cuff around my arm. The touch of the cuff around the circumference of my arm made my arm ache. I looked at the automatic blood pressure machine, hoping this would soon be over.  I immediately noticed my heart rate was 120 beats per minute (normal being 60-100 bpm).  I wondered if my heart was in trouble like the rest of me. This made me nervous, and I could suddenly feel my heart bounding within me. I told myself not to pass out.

 Moments later an Indian woman with a long braid, a steady voice and a clipboard entered the room. She told me my workup had been negative from her standpoint. No HIV or any other infectious disease had been contracted during my time abroad. For the first time in months, I breathed a quiet sigh of relief. 

My relief was short lived.

She went on to say that my ESR (or rate of inflammation, normally 1-10) was significantly elevated at 80 and that I was quite anemic. This was no surprise given my level of pain. I knew I was sick, so the anemia didn’t surprise me either. She handed me a bag full of anti-inflammatory samples of a drug called Bextra, a ‘super’ ibuprofen.

The next few moments were a blur. We wondered what the plan would be. We had ruled out the scary infectious diseases. “What else was there?”. 

She recommended referral to a hematologist/oncologist.

I don’t remember reacting to this. Maybe it’s because I was so tired. Maybe I had reached the brink of what I could handle. So tired of the game, doctor hopping, hoping for an answer. An unbearable amount of waiting.

I was numb.