Losing

In December I wrote a lengthy post about Kim’s health and the impasse we had reached with her rheumatologist. We asked for help from the Rheum community and we got it. This is the follow up to that post.

First off, how is Kim doing? Well, she’s better than she was in December, but is still not as good as she has been and is not anywhere near where we would like her to be. We went against her doctor’s orders and continued her on the methotrexate and over the last few weeks we saw some improvement. We attribute this to the Humira and the methotrexate working together like they have in the past. However, we are still not seeing as much improvement as we would like.

We have made the decision to move forward with finding a new rheumatologist. He told us when we saw him in December that he “didn’t know what to do” with Kim’s Rheumatoid Disease (RD). Yes, that is a direct quote. No, that is not acceptable. After my post in December, he sent Kim an email to go over the MRI report that she had done on her hand. Kim’s MRI was negative. Based on the negative MRI and that — in his opinion — the disease was not active and showed no “visible swelling or outward manifestations” he wrote that his only conclusion is that Kim’s joint pain must be “stress, poor sleep, fibromyalgia, or osteoarthritis.” In other words, he was basically saying that Kim’s pain is all in her head. Again, that did not go over well.

But the point of this post is not for me to blast Kim’s doctor. Instead I would like to point out something that only became apparent to me in a conversation Kim and I had the other day. We were discussing moving on to a new rheumatologist and Kim — in reference to her old rheumatologist — said, “It’s too bad. He could have learned so much from having me as a patient.” Now she wasn’t saying that in any egotistical way as if she would be able to impart great amounts of rheumatology knowledge to him. No, she simply meant that he could have learned a tremendous amount simply by having her as a patient. We recognize that Kim has a more severe form of RD than others have. That for those who have a less severe form their treatment is easier to manage. But we also know through our interaction within the Rheum community that the severity of Kim’s RD is not uncommon at all. The fact is that there are many who have it worse than she does. Instead of seeing Kim as a “difficult” patient, we had hoped that he would recognize that for many people with RD Kim’s symptoms are downright ordinary. Unfortunately for him, he missed that.

Because of her rheumatologist’s indifference to her symptoms, his inability to listen, and his unwillingness to explore the full scope of her disease; and his unrealistic holding to textbook definitions and outright denial of real-life evidence of what RD actually looks like, he is the one who is losing out, not us. We will find a new doctor who will work with us and listen, but her old doctor missed an opportunity. A chance to learn what RD looks like in “real life”. An opportunity to be a doctor who recognizes that beyond the disease descriptions there are patients who know more than any textbook because we live with it every day. And that more importantly we are not simply patients, but we are people. If only he could have seen that we were not simply another name on a chart, but that we have real pains and real concerns and genuine fears about our tomorrows with RD. To step beyond the medical hubris and step into the lives of the patients and recognize that we deserve better, then he could have been truly great.

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2 Comments

Filed under RD, Rheum

2 responses to “Losing

  1. Cindy Blair

    Kim,
    I too have a very severe form of RD. I am 48yr. old and also have had to fight to get “clear” or “normal” MRI’s seen by the correct Dr.s. Unfortunately, It took about 2.5 years for that process. I knew I wasn’t crazy but began to wonder at times because of what I was being told.
    One and a half years ago I received a diagnosis. Unfortunately, since it had taken soooo long for the diag. to come. My body was like an onion that needed to have many things that had built up (related to and impacted) by RD. Had to be dealt with.
    In 2012 I received 2 (right and left) Arthroscopic hip surgeries. Since then, Dr.s have begun to listen to me a bit more closely. Nothing was showing up on imaging as being wrong but once the Surgeon got inside he couldn’t believe the damage. PT has been a long road and maintenance will be hard but I’ve gotten back the ability to walk. Although, with a cane.
    Hang in there Kim and keep fighting for what you know is right and what your body is telling you.
    I agree, it’s a shame to see and experience what RD patients have to go through to receive the correct care from our healthcare professionals.

    Blessings to you both,

    Cindy Blair

  2. I seem to be walking the same path as Kim. My rheumatologist has been good but also doesn’t see beyond what’s in her written material. I’m still considering whether to move on or continue with the NP at my rheumy’s office since my disease is “stable”.

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