Thursday, October 15, 2015

Tracking Symptoms: Not As Beneficial as I Had Hoped

With the hip pain I have been experiencing lately, I thought it was a good idea to begin documenting my symptoms somewhere. I have this huge problem of completely forgetting about symptoms if I am not experiencing them at the appointments. So, I started using an app called Rheumatoid Arthritis Diary. I like that you can add your symptom intensity, make comments, describe your symptoms and pain, log triggers, exercise, medications and treatments, and test procedures. You can even email it to yourself and print it out for appointments.

When I left for my appointment with my hip doctor yesterday morning, I was so proud of myself for having everything in print. I circled a few things that I really felt were necessary to discuss. I felt confident that this time I wouldn't forget anything. I would finally be able to give a full description of how I have been feeling. Unfortunately, I would have been just as successful going in with a blank memory.  Here's how the appointment with Barbara went:

B: How are the hips?
C:  Still hurting.
B:  But are they better?
C.  Yes, but the pain has changed.
She listens and has me get up on table as I explain that the pain isn't limiting my activities other than wiping my energy and they don't hurt today. (emailing her to complain last week took care of that I guess).
B:  Does this hurt?  (moves my leg)
C:  No.
B:  Does this hurt?
C:  No. (moves leg in another direction)
She continues moving my legs and me answering "no". Finally she says, "Well, I don't know what to do for you."  I was being dismissed.

I don't really know how to explain the pain I have been feeling. It moves around and can be very mild or very intense. I felt like an impostor sitting there. All the sudden I forgot all my notes and felt like I had made all this crap up in my head. I panicked. "There isn't anything they can do to help me."  I started crying. I mean really crying....hard.

Again, this is why I love Barbara. She stopped, took a deep breathe and explained that my rheumy asked her to do a specific job and she did it.  She then gave me a big hug and asked if I would like something for the pain at night. "Yes, please."

I left and tried to reschedule my November appointment with my rheumy for sooner but there wasn't anything. The receptionist wanted to know if she could leave a message with the doctor and the tears came again. "No, I can't control myself to talk about it now.  I'll email her."  All in all, a disappointing morning. However, the pain is gone for now.

Lesson for me:  Complain about the pain more often and maybe it will just disappear.

1 comment:

  1. Yeah. Tools only help if you remember to use them. Have you ever thought of bringing someone - family, friend - to appointments with you? They can help with moral support and remembering things you forget. At least until it becomes more of a routine for you to pull out your reports.

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