Yesterday, I had a short appointment to meet my new primary family doctor. It is necessary for me to have a local physician to cover the basic grounds of needs that I may have, like getting my ears cleaned or lab work done. Most importantly, I needed a local doctor to regulate my blood thinner levels when I take an INR test at home. Because I am now at a certain age and new health care policies, some of the doctors from my team of specialists at Children’s can no longer see me as a patient. Not that they don’t want to see me (as I was told last Fall when I had my long day of seeing the team in rotation,) but I would soon be out of their age of expertise. My birthday early Spring marked that I am now too old. 😉
The local family physician will now be, in terminology, my hematologist (regulate INR levels) and my Genetics doctor (regulate my thyroid level and others like Vitamin D, etc.) I am very thankful that Children’s has an adult program for patients with extreme rare diseases like myself and that I am still under their quality care; but for the basicness, I must admit…having care so close to home is a nice aspect.
Going to the doctor’s office usually means paperwork. Even though I have been a patient before at this facility in town, due to new regulations (no doubt) and the fact that it was a new doctor/first time visit for me, we had a questionnaire to fill out before we got into a room and then had lots of conversation questions between the nurse and the doctor. I have been to my fair share of appointments, so I knew the typical routine: height, weight, vitals. Then medicines. Not to say that I am a genius, but somewhere along the way, I finally typed out all of my medicines with their full prescription names and doses. I even alphabetized them. (Genius!) haha. 🙂
Next you cover the basic family tree: paternal and maternal–parents and grandparents. Because my disease is genetic, my two older sisters also get looped in the information. Then it’s me. Where do you begin? We already covered the one sentence definition: I have NF2. I tend to talk too much and too detailed, so usually Mom or Dad give the basic rundown of history, starting freshman year of high school–the basics of treatments and how they affected my body and what doesn’t work in my body anymore. i give my two cents when needed, make corrections or answer questions.
I usually get asked three main questions: Do you smoke? Drink alcohol? Any chance you are pregnant? No, to all the above. So yesterday when the nurse started asking me questions, I was startled by the first, due to–what I considered–the randomness of the inquiry: “Do you drink caffeine?” Now understand, the past week there had been extreme late nights, awakening with early mornings and a bustle of family activity. Even yesterday, after an early morning farewell to Marcia as she heads West for the summer, Mom and I decided to do all our errands in Xenia before the doctor appointment. I like checking off my errands lists, but it leaves me exhausted..especially when in a hurry (my body doesn’t hurry.) “Do you drink caffeine?” Even after my two morning cups of Tim Horton’s coffee, obviously, my mind was not functioning.
I look at Mom with the, “I am quite confused!!” facial expression. “Caffeine,” Mom says. Reading Mom’s lips, the brain solves the equation: Caffeine was your morning cups of coffee. My eyes widen with energy, “Oh yes! I drink caffeine!” I get the reassuring nod and as the nurse continues to look at the computer screen, she asks the next question: “Do you exercise?” Fully awake and comprehending the question, I chose my reply wisely–“Define ‘exercise.'” 🙂 After a pause, I add,”because if you’re looking for running or crunches, then my answer is no. I do neck stretches, but things like walking up the stairs is an exercise for me…everyday living is an exercise.”
It’s true. Trying to stand with good posture or keeping my head upright is an exercise. Bending down to pick up something off the floor is an exercise. Folding my laundry, helping with the dishes or pouring milk from a new container is an exercise. Today, it was walking on the grass with my walker from the parking lot to the circus tent. These daily exercises may not be adequate enough to re-strengthen what the tumors have destroyed–in fact they’re not. But there is still a hope beyond the dwindling physical strength and it is more than adequate.
This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength!
Nehemiah 8:10b, NLT