Day by Day

Two weeks ago, I had to be at clinic to receive IVIG and I started feeling the side effects about a 1/4 of the way into the infusion. It was a complete mess. I felt so frustrated. I was sitting in the glass room, crying, uncomfortable, drowsy, and vomiting. I wanted to be anywhere else than sitting in the purple recliner, hooked up to an IV, and feeling poorly. Last December, during transplant, I was in survival mode, and I pushed through the nausea and the pain. I told myself that I had to get through it and then it would be behind me for good.

Each time I find myself being treated at the hospital, whether it's an infusion, a shot, or a meeting with the doctors I feel angry. I resent that I have to sit in the room, feeling sick and everyone completely invading my business. I struggle with the fact that to this day, I am still dealing with the pain when I thought it would be long gone.

They stopped the infusion for about 10 minutes and decided it would be best to try it again. The doctor came into my room and said, "Okay, we will try it again, and then if you get nauseous, we will stop." She walked out of the room and I finally got the nerve to say what was on my mind. "I am sick of tired of being the test rat in this trial and error process."  The doctors are so compassionate and I know it is there job, but when they say things like "Let's try it and we will deal with the side effects.", my heart aches. I love them and respect them, but honestly, I am the one who get nauseous and gets headaches. I am the one who has to deal with it. Sometimes the doctors are the ones who have to deal with my anger when they don't deserve it. (So, if you're my physician, I am sorry.) But I can't exactly yell at MDS.

In the beginning (March of 2009) I wanted to know every possible option and scenario. I would play the "what if" game…"What if my counts did this, would I need this? But what if my liver did this? Would I have to go through this?" At this point I am on a need to know basis. Have you ever heard the saying "ignorance is bliss"?

But, let's get to the good part...I was invited to the "Red Ornament Event" for Phoenix Children's. The hospitals largest donors would be there to watch as they lit the new building for the first time, performance by an 8 year old gospel singer, Rhema Marvanne, and a designer Christmas tree showcase. However; on Wednesday I was contacted by a publicist at Phoenix Children's, the guest speaker could no longer attend and they were hoping I could fill in. They asked if I could share my story, my Christmas traditions, and light the tower. The event was held outside and I was honored to be invited to speak. It was truly a blessing to be a part of it. I got a sneak peak inside the new hospital (before the doctors and nurses..na na na na na na), the Waltons of Walmart introduced me, and I got to thank the people who had funded the hospital that is such a big part of my life. They even asked me to flip the giant switch to turn the lights on the new 11 story hospital. On Friday night, you would have never known I had been so sick just three days earlier. I was wearing make-up, I was walking around(in heels), practicing my speech, laughing, smiling, and feeling so blessed. It was one of those nights that I couldn't stopping smiling. I was in awe of what this life had to offer. I had to really embraced the moment  and the blessings that God has set in front of me. I looked back at all of the pain and the struggle to realize it was worth it all.

Part of my speech included flickering the lights on the Christmas tree in an attempt to get the patients who were currently hospitalized attention. It made me realize how far I'd come. In one year, I went from the girl in the hospital bed to the girl on stage lighting up a hospital that would change peoples lives forever; just like the old PCH has changed mine. I realized that I am a part of something much bigger than me.