PFWP. Yes, that’s right. Since acronyms are the rage, I have developed my own. Patient Frustration with Physicians.
I had an appointment with my rheumatologist today. To say I left the office frustrated, confused and somewhat defeated is a major understatement. I had one simple question, so I thought.
I am not a medical professional, but I try to learn enough to discuss my health responsibly. I prepare before my appointments and don’t waste anyone’s time.
The appointment started with the quick review of the HAQ. I don’t always experience pain and my pain threshold is quite high (I birthed two kidney stones with no pain meds), but I do have stiffness and other symptoms. Since I do not list “pain” per se, I believe it changes the scope of my appointment.
We quickly got to a review of my meds. When he asked about methotrexate I asked what would happen if I stopped taking that med. It went downhill at that point. Each time I tried to ask something, I got a rhetorical response. I felt as though we were going in circles. It was confusing. I asked something, he just looked at me. I tried to rephrase it, thinking I didn’t make myself clear. I began to get a little nervous. After a few minutes in that cycle he said I had asked ten questions and which one did I want answered.
He then said something that stopped me in my tracks. I asked about disease activity and his response was he didn’t see much with me. Then he stated RA activity was noted by four symptoms – redness, heat, pain and swelling. He said he didn’t see any. I held out my quite swollen, stiff hands and said ‘what about this.’ He pointed to a chart that showed a comparison of osteoarthritis to rheumatoid and told me I should realize people started aging after four decades. He suggested my hands were osteo because there was no heat, redness or pain. (So why have I been told rheumatoid for four years?)
The next discussion was on stopping or not stopping the med and it was all given in metaphors (his explanation). He may have thought it was interesting … amusing … entertaining, but I didn’t. It’s my health and it’s not funny to me.
I had asked if there was any way to know if the med was working without just stopping the med. I mentioned I had read accounts of others who said they or their doctor didn’t think their disease activity was very much by visual or palpable assessment only to use some other diagnostic and find it was much worse. He again recited the four symptoms necessary for activity. He ended the conversation by saying he could do a Vectra DA test that would give a more clear picture of the level of disease activity. He said it was not so ‘subjective.’ I had the labs done and left.
It was only one question. The problem is I now have more questions than before. I have no idea what my diagnosis really is. I have never had anyone initiate an explanation. I have questions about the meds, about the side effects and potential damage. I have no idea how much this Vectra test costs, but have heard it’s quite expensive. I don’t know if insurance will even cover it. It was just a question. I just wanted an answer.
There are some days I am resilient, strong and nothing bothers me, but today, it bothered me – a lot. I had one question. I thought it would be relatively easy to answer, but it become a play of words. I got the distinct impression there was something I said that he took exception to. More on that later.