Last year my neurologist retired. I held back tears in the car on the way home from my last appointment. Dr. F was amazing. He made me feel secure in my ability to manage MG. When MG got beyond out of control, it was Dr. F who suggested experimenting with IV chemotherapy. Although 23 cycles of moderately high doses of chemo was hard to deal with, Dr. F always made me laugh.
soft purple cap. I was self-conscious and so uncomfortable in the waiting room. It was obvious I was bald and had no eyebrows. I looked at the floor, eyes full of tears.
Dr. F came into the waiting room and said, "Hey, Baldy! C'mere!"
I started laughing. The 18 months of chemo didn't put my MG into remission like we hoped. Clearly pounding the crap out of me for another 18 months wasn't going to do it either. So, Dr. F and my oncologist got together and came up with a different plan.
Now I take chemotherapy pills at home, and I grew back my long hair. Year after year I kept seeing Dr. F and every appointment I was reassured that I was doing OK. He always said, "For the shape you're in, you're in good shape."
After he retired, he passed his practice to a new doctor, Dr. P. Today I had my first appointment with Dr. P and I was nervous. Would she be as kind and compassionate as Dr. F? I've had some doctors that were rude and unkind. Meeting a new doctor turns my insides to jelly.
Dr. P went over the notes Dr. F left her. We talked about MG and how it's going. I told her I had weak breathing last week. She asked what I did about it. Wait and take Mestinon as always. She let me know I made the right choices. Dr. P reaffirmed what Dr. F said to me over the years, "You know your body and you know what you're doing."
When a doctor treats me with respect and affirms my competence, I know I am in good hands. If I didn't know how to manage MG, I would be dead. Instead I am here, thriving and growing.
I know when I need 90 milligrams of Mestion and when I need 60. Last time I came out of surgery, and my breathing muscles didn't want to wake up, I told the nurse I needed 90 mg of Mestinon. Dr. F must have written the orders, because she didn't hesitate or argue. One and half tablets were in my hand in seconds.
My new doctor gave me the same confidence that I know what I'm doing when it comes to MG. She also offered compassion. MG is an endlessly frustrating and ridiculously hard disease to live with. It is also frustrating for doctors to treat. They can see what is wrong, but cannot fix it. Suppressing the immune system, so the antibody attack is slowed down, is the best they can do. I know taking weekly chemotherapy for the rest of my life is not optimal. My new doctor let me know that she understands.
Compassion + Knowledge + Respect for the patient = an awesome doctor. I'm glad I met you today, Dr. P. Thanks for everything.