Hearing the words “Unknown Progressive Disease”

January 9, 2015 5:09 pm No Comments 1

I am now officially very scared. My team of doctors have admitted that they do not know what is happening right now. They called me “a puzzle” yesterday. My oxygen levels dropped when they walked me down the hall.  I had two CT scans over the last two days and they took a lot more blood.  I spent over 15 hours at the doctor’s offices this week just with me. I spent a total of over 22 hours this week in a doctor’s office between my children’s appointments and my own appointments.  I am scared. I want answers for them.  I want answers for me.  I want a treatment plan. I do not want this to progress. I read the notes from another doctor. She wrote “severe systemic illness” in my notes. What??!??!  How is this happening?  Why is this happening?  I have to be here for my three children. I need to be here for Ava, Oskar and Lucy. I need to be here for Justin. I need to be here.