It wasn’t until after those 2 rounds of treatment that I found my One. Now, some of you may be thinking…Oh God, she’s going to write about her love life! Take a breath guys, the conversation about relationships will come at a later time. Although, I am referring to another kind of special relationship that can be found and cultivated. My Special One is my Hematologist/Oncologist, Greg Vercellotti. He is my Specialist that I have chosen to be my teammate, my advisor, my defender, my rock, and I can fondly say my Friend.
My hope is that everyone is able to find that great working relationship that should happen between a doctor and a patient. In having this lifelong rare illness, I believe it to be necessary to choose your care team wisely. Let me say this again, you have a Choice and a Responsibility to find a care team that you feel comfortable with.
My first specialist was not the right fit. I knew this, but I didn’t have the strength at that time to make a switch because my mind was clouded with treatments, facts, figures, and fear. I would walk into that small office and she would say “Hello, Ms. Nesheim” in a monotone voice. She would walk over to that computer in the corner and start typing away without so much as a glance into my eyes. So much is going on behind those eyes. I wanted her to see beyond the numbers and charts. I needed someone to acknowledge that I was a person with a god damn life. Don’t get me wrong, it is crucial to find a doctor that is well versed in the realm of PNH (or other rare disorder). I knew I needed more for myself. I wanted open, honest communication. I wanted my doctor to show compassion and empathy. Neither of these skills can be taught.
I respect the white coat, but what I have come to know is the man underneath. That Special One. This is a long, hard road and I knew I wanted someone to walk beside me, not miles in front of me. Now that I have that Medical One figured out, maybe that other One isn’t very far behind…