How are you feeling? It is a loaded question and one I never like answering. I see nuance in the answer, where others seek a black and white. Usually it’s a ‘check-in’ statement with the asker expecting a quick, “I’m fine,” and no more. But for me, I hear “how are you feeling” in relation to my last infusion, pain in my hands, back pain, blood sugar, pump set, carbs eaten at lunch, bicycle ride, and TV schedule for the night. In order to answer fully as concerns my rheumatoid arthritis and diabetes, I have to consider a lot.
So for example, a thoughtful answer: “My blood sugar is 153, my pump set is due for a change, the infusion was fine, but now I am lapsing back to normal, the weather is a little cool so bicycling may not work out today. I have yet to have lunch and oh Pawn Stars is on tonight. So given all of that let’s say ‘fair’.”
No one wants to hear any of this, so I filter the information and arrive at a ‘not good,’ fair, fine or wonderful. No one is aware that I am evaluating any of this and considering all my personal data before my trite single word answer. Everyone wants the bottom line one word short and sweet pat middling answer: “I’m fine.”
But all this gets a lot more complicated when the doctor asks how am I feeling. I still factor in all this stuff, but I also have to include and make more important the medical items. So when the doctor says how are you doing Rick, I have to measure things like pain, stiffness, A1C, back pain, energy, sleep, the movie I saw last week, what might be on TV and if I need to get home to walk the dog.
This is not an easy answer to hand out. Faced with this uncertainty I usually go to the most popular answer and tell the doctor, “I’m fine.” And why not? I am sure the dog will be OK, the movie was good, I can’t sleep but my joints are only somewhat hurting. Taken all together I guess I am fine.
The trouble is the doctor really wants to know how I am feeling—not something that has been easy to do so I could convey the info my doctor about really wants to know—until Arthritis Power.
You can find the Arthritis Power Registry (APR) at http://arthritispower.creakyjoints.org/. The benefits are twofold. You can not only take the data you enter to your doctor and show her or him the results from daily or weekly tracking of symptoms, but the data you enter will be anonymously combined so CreakyJoints and their research partners at the University of Alabama at Birmingham can discern trends, work on treatments, or target the development of RA drugs.
So this, Doc, is how I have been feeling—and I’ve been taking part in a research study too (usually a plus).
The symptoms you can track with Arthritis Power include joint pain, sleep, activity and social interaction, all markers of how we are doing with our RA treatment. While the data is a self-evaluation of disease outcomes, it is these perceptions of disease that the doctor is asking us about when they ask how we are feeling and doing.
I have answered the evaluation questions five times, and each time I discover something new about my disease and how I am functioning. I really enjoy that I can take the results to my doctor so when she asks how I am doing, I have a great answer both on paper from APR and I can add in my internal more comprehensive perceptions (like how Sanjaya is doing on American idol).
I also think it is very cool that researchers will receive the anonymous data in bulk and be able to better discern population outcomes for participants. So your data is useful to you, your doctor, and in helping RA researchers find better treatments
Now if Arthritis Power could just track the popularity of TV shows, movies and sporting events—Go Indiana Hoosiers—we would really have something.