Was It Something I Said …. (Patient Involvement) Ooops!

I have made several attempts to write a follow-up to my previous post about frustration at my doctor’s appointment (PFWP, Patient Frustration With Physicians).  Three days later and I still am frustrated, but for different reasons.  I am really quite mad at myself for not getting clarification before I left.  I am still confused about what was discussed, especially about diagnosis.  I am also disappointed with how the conversation spiraled out of control.

So here are my thoughts ….

Hubby and I both believe there was a turning point in the appointment.   Individually, we both felt it changed at the point I said “patient involvement”.  It happened at the beginning of the appointment.  He was pulling up my chart on the computer and I asked if he knew what February 2 was.  He didn’t.

I responded with Rheumatoid Awareness Day.  He thought arthritis awareness was in May.  I told him that was another foundation; Rheumatoid Awareness Day is sponsored by the Rheumatoid Patient Foundation.  He responded “patient foundation?”.  I asked if he had heard of Kelly Young.  After a pause he said RAWarrior?  I told him a little about RPF and ‘patient involvement’ was the only phrase he repeated.

After those two words the tone of the appointment changed.  It was not about the Foundation, but there was something about patient involvement.  He reviewed information on the computer.  Next was a quick assessment of my joints and then he returned to the computer.  That’s when I asked the question and the out of control spiral began.

Since that appointment I have wondered if there was something I said that put it on the wrong path.  Am I certain it was those two words – No.  However, it was definitely a coincidence.  It’s like driving into a storm, you think you’re doing OK, but as you continue you realize it is not as you expected.


I am very analytical and have reviewed the conversation over and over in my mind, along with recapping it in writing and discussing it with my hubby.  The one point that continues to surface is it seemed he was intent NOT to give a clear, concise answer.

I really only had one question.  However, the initial and subsequent responses were similar to going through a maze in the corn field at Halloween.

I have been directly involved with the healthcare and caregiving for my father, mother, cousin, best friend and husband, in addition to my own healthcare and also the veterinary care of our dogs.  I am responsible.  I can listen.  I can read.  I can learn.  I can be involved, as every patient or caregiver should be.

I am a strong advocate for patient involvement and this experience strengthens that resolve even more!


Again – I will clarify that I do respect and depend on the medical community.  This was one experience and it was a huge learning experience.


Rheumatoid Awareness Day Events     . . . . .   What is Rheumatoid Awareness Day


PFWP – Patient Frustration With Physicians

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.


Frustrated Patient

Please Note –
I do appreciate and respect the work from all medical professionals.  I depend on it.
I also wish for a mutual respect and open communication between physicians and patients.