It was a busy week, I started back to work after being off for 9 weeks recovering from a shattered wrist, had 3 doctor appointments and 2 physical therapy sessions. Although I jokingly call myself a professional patient, even for me the week was an especially jam-packed one. It’s often at these times when you’re worn down that a curveball comes your way and can throw you for a loop. Well, wouldn’t you know it, lucky me to compound this busy and stressful week I found myself staring down a curveball.
Last year I started seeing a new immunologist (my previous doctor of 30+ years had the nerve to retire!). By this point in my life I’ve seen enough new doctors to recognize the sparkle in their eye when they look over my medical history and then proudly parade their latest class of eager medical school students into the room to check me over as though I were a highly endangered species going on display at the zoo. This dance usually goes on for a couple of visits and then my new-ness seems to wear off and we get down to business. I’m finally at this point with the new immunologist, the drill is I’m seen by the resident, then the attending physician and then the department head comes in to give me a final once over and I’m on my way. Other than the broken wrist I’ve been doing well, fairly healthy, blood levels look good, okay blah blah blah… Doc, let’s just wrap this up I need to drive 15 miles to get to my physical therapy appointment! In my mind I was already out of there, I wasn’t present in the moment and didn’t notice the sparkle in the department head’s eye. Uh oh!
After reviewing my chart and blood test results over the past 10 months the immunologist wanted to take a new approach to my care. Now for the last 30 years I have been giving myself an injection once a week of a medication that has changed my life…actually it has given me a life! Before taking this medication I was sick 5 or 6 times a year, each time I got sick it turned into pneumonia and things went downhill from there. I spent summer breaks in the hospital, our family could hardly plan a vacation as my health could turn to a precarious state at any moment, my life was ruled by sickness. Since taking the medication I went away to and graduated from college, traveled the world, lived and worked on a farm and ran a business, just to name a few things. Without the good health this medication has afforded me, I couldn’t even begin to imagine any of these things to be a possibility in my life. The immunologist wanted to do an experiment, take me off this life changing medication for a month to see how I’d do. I was blindsided.
A million things rushed through my mind but I was in such a state of shock I was only able to formulate a couple of blasé questions and then the doctor left. The nurse came in with instructions for some blood tests to be performed before this new experiment began and I was shuffled out the door. My head was spinning as I drove on to my physical therapy appointment still trying to digest this development. I was going through my summer plans in my head panicking at the thought of becoming unexpectedly and severely ill missing the 8 concerts we have tickets to attend; the trip with booked flights to visit my brother and his family; being unable to spend time with my newborn nephew; being absent from work for a long period of time after already being out for 9 weeks while recovering from a broken wrist. It was all really overwhelming.
Once I got home and was able to just sit, take a deep breath, absorb everything and talk things over with my husband, a long forgotten memory came back to me. I remembered being around 5 years old and my mother giving my pediatrician a piece of her mind after the 4th chloride sweat test failed once again to diagnose the Cystic Fibrosis the doctor was positive I had. My mother saw the ridiculousness of the multiple fruitless tests and wasn’t afraid to stand up to the doctor and say no. No, you’re not running this test on my daughter again, no she doesn’t have Cystic Fibrosis and no, you don’t know what you’re doing! She was so assertive and strong, a true champion for my overall wellbeing. That memory was a beautiful reminder to me that I am ultimately in control of my care and health. My immunologist may think this could be a good idea, however I have to live my life with the consequences this experiment may have and the risk isn’t something I am willing to take. I emailed my doctor and just said NO!
I am at peace with my decision, even if it ultimately means finding another immunologist. Being an empowered patient isn’t easy but living with serious health conditions and chronic illness teaches you a lot and sometimes you have to draw on your arsenal, protect your welfare and just say no to your doctor.
Last summer was epic, and because I just said no to my doctor I’m not going to miss out this summer on making more memories like these…