So here’s to a beginning. I have been wanting to write for a while but haven’t been able to pull together the words as to all that I have been feeling and learning. It has been on my heart to share some of my experiences that have truly shaped me to be the person I am. It has pressed on me to share about some of my darkest times and how I was carried through. This blog is dedicated to the Lord, the very one who carries my world.

Wednesday, May 18, 2016

Silence.



I felt the room get cold, and suddenly my world seemed to stop moving. I could no longer hear Dr. Arnold’s rustling with papers or the medical assistants chatting down the hall. I didn’t hear the man in the next room coughing violently. No, at that moment, everything in my mind went silent. Hearing the words “you have lupus” sent a chill through my body and I felt myself inwardly jump back in shock. For so long we had yearned for answers. For so long we had desperately persevered. That day we got our answer. It was then that I realized that I didn’t truly want the answer. Feeling as if I had had the wind knocked out of me, I wondered what the heck was lupus? I was annoyed that I “had something”. Wasn’t she supposed to tell me this has all been a terrible mistake and I can go home now because things will all be fine? I had always been so healthy. What would my life look like now? Dr. Arnold gently smiled and suggested I go home and do some reading online to learn more. I saw my mom eagerly nod her head and felt myself get annoyed. I would be doing no reading. I didn’t want to know more. I already knew too much. I knew I had something. Something that was permanent. Something that wasn’t going away. I could sense it wasn’t something small either. By the way Dr. Arnold and her nurse looked at me, feebly hunched over on the exam table, I knew it was big. I breathed in deep, attempting to summon what little mental strength I could. Dr. Arnold told me she would be starting me on a medication called prednisone. She told me that I would begin on a very high dose of 60mg and that we would taper this over time. She also told me I would be starting another medication called plaquenil, which I would take two times daily. I asked her how long I would remain on this medication and she told me indefinitely. “As in the rest of my life?” I blurted out. She nodded and smiled. I told her we can try the medication but that I felt I would get better. She just had to be wrong. I told myself I would play along with her little game. Just for now. She would see I didn’t need all of this.

And so I reluctantly played her game.

She was never wrong.

She then told me in a few days I would feel better and that the prednisone should increase my appetite, help alleviate my pain and help me to gain some weight. That I could hear. I didn’t believe her but I didn’t mind hearing at least that much.

We left her office that day exhausted and in just as much pain as when we had come. My heart was heavy with news of a diagnosis. My mom grabbed my frail arm, helping me down the stairs and into the car. I could feel myself short of breath and my heart pounding in my chest, and I had only gone a few steps. My mom drove us a few blocks down the street to Friendly’s for some dinner. I agreed to go, hoping it would calm her nerves. We sat in the restaurant and placed our orders. I knew I wouldn’t eat. Food hadn’t tasted good in months. I looked around and all I saw was dismal grey. There were no words to be said. I felt no emotion. Numbness had taken over and I felt like a shell of a person, completely hollowed out. I glanced across the isle of the restaurant and instantly wished I hadn’t. It was a family with two young children, each laughing and eating ice cream. I felt myself stare for a moment, taking in their smiles and felt my own heart drop. I watched my own dreams as a mere outsider, watching others live my happy life. The life I was supposed to have.

But everything was different now.

And everything was difficult.

My mom finished her meal quietly. I tossed my chicken fingers around on the plate a few times over.

We headed home, both heavy in our thoughts, not saying a word.

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