Sharing the lessons along the way…


Over the weekend, I started to become more and more anxious about seeing my neurologist.  I began to wonder if he got my phone message from his nurse about my decision about the pump’s ultimate removal.

I began to wonder what he would think about this decision.  Would he behave as reluctantly as the pump doctor has?  Would he challenge my decision or judge it as “crazy”?  For a while, I convinced myself I was crazy to do this during this mental hamster wheel activity.

Furthermore, how would I get from the parking garage to the office building?  Should I bring the manual chair?  Can I push the manual wheelchair up the incline between the garage and office?  Maybe I should let my friend take me as we planned.

Besides that mess of obsessive thoughts inside my head, I also noticed that I kept repeating to everyone I talked to over the weekend that “This is my choice. It is my body.”

English: Human Skeleton Model. Deutsch: Modell...

(Photo credit: Wikipedia)

As I was riding home with my friend from the appointment, I was sharing with her how the visit went.

The more I heard myself tell her about it, the more I heard just how much I went in there as a person in charge of my own health and well-being.

Then I said, “Gosh, it sounds like I went in there and told him what’s what, doesn’t it?”   Indeed I did just that.

I realized later that I didn’t care what his perception of my decision was.

Please don’t misread me here.  I certainly value his opinion and body of knowledge about matters related to my condition and symptom management, but what he thought about this decision, or me for that matter, was irrelevant.

I have not felt empowered with many doctors over the last few years since the pump drama began.  This was a level of empowerment that my primary care doctor (PCP) facilitated when he brought out into the open the fact that it is my decision to continue this treatment option.

I let that carry me through the next day’s appointments.  I was also able to tell the pump doctor what the neurologist had to say, and felt empowered while doing so.  I rarely have felt any level of it there because I have rarely gotten what knew I needed from him.

Prior to all the pump problems and being told, “you shouldn’t be having pain,” and various other invalidating phrases over and over again, I was just getting the hang of being the empowered patient.  I only had the doctors to rely on for my health during my rapid decline in the early years and felt totally powerless back then.

Well, not anymore.

When I saw my PCP yesterday, I said, “Do you know what you did last time I was here?”   I thanked him for facilitating all of that.

More on the specifics of those appointments to come…

In the meantime, do you consider yourself an empowered patient?

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Comments on: "MY body, MY doctors, MY choice." (6)

  1. I am so happy you have reached this point – life will be better for you because you are now an active participant in your health care. I have stopped going to a lot of doctors because I didn’t feel they listened or were willing to have me as a partner in my health care. Healing can only take place if there is a partnership with mutual respect and trust. Good going, Tawny. And I like your PC doctor. 🙂

    • Thanks Pat! I have been here before, so it is nice to be back!

      • Isn’t it amazing how some health care providers and some illness take away our sense of power? One of the doctors I went to said what surprised him most when he had eye surgery (his first surgery ever) was how much control he gave up over making health care decisions. His wife is also a doctor and he let her take charge.

        • It really is amazing. We are generally vulnerable when we see these doctors, so maybe it isn’t that surprising. I had a great team of doctors for a while there and each trusted me to guide them about my symptoms and pain. My PCP is great about referring me to other doctors who applaud the control I have taken over my health. Pump doctors are few and far between, so choices are limited.

  2. congratulations on speaking up and putting your instincts first!

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