The anxiety heightens as yet another doctor’s appointment looms ahead. It’s a new doctor, at a new University facility, and a somewhat fresh start. I think I’m becoming a pro at explaining myself, my 37 symptoms, and my declining state of physical incapability over the last 16 months. Yet, I know for a fact that no matter how articulate, precise, and accurate my words are, most doctors pluck what they like out of your 10 minute conversation and leave the rest to fall to the floor like unwanted trash. So, I’m trying more and more to turn to an alternate source of communication (that doesn’t involve a circus size hammer hit upside the head)…the written summary!
I’m going to wrap up what amounts to a large binder full of medical experiences, hardship, hope, despair, testing, medications, and deterioration into a nice, neat 1 page summary. It reminds me of a high school project from hell! Where do I start? What’s most important? What is the one key element I need to include in order to turn on the proverbial light bulb in a doctor’s brain to finally diagnose me and therefore help me?
I want to write that when my deterioration started, I was a happy, healthy, vibrant 38 year old wife and mother. I’ve walked marathons, volunteered hundreds of hours of service to my community, feverishly supported the activities and accomplishments of my son, enjoyed countless hours of good times with my husband and our friends. I want to write that I threw the best parties in town. I want to scream on paper that the last thing I ever want to do is walk into yet another doctor’s office and explain what is wrong with me, how I know to my very core, even though the tests and images don’t show it, that something is very, very physically wrong with me.
Yet, my experience shows that none of that matters in the medical world. Instead, I’ll need to gather my “data” and recite how many doctor’s I’ve seen, which tests show some sign of disease, how many ER visits I’ve had, how many surgeries I’ve been thru, and how I am now to the point that even getting dressed and taking a walk around the block is an extraordinarily labored task. One thing I’ve learned is that most doctors respond best to statistics and precise data. My personality, the fact that I am a shell of my former self, has little to do with diagnosing my disease.
So, I update my symptom tracking chart. I track my blood pressure and heart rate 4 times a day and note my activity and comfort levels. I continue to gather all of my lab and radiology testing results and images and pack them around like art pieces. And now, I sit down and try to technically wrap up the 20 months of physical hell that I continue to live thru in a concise and neat 1 page summary…
Your comments and experiences are welcomed. I’d love to hear from you!
