While I have felt confident in my decision to move forward with the pump’s ultimate removal, there has still been a tiny seed of doubt. On days that the nerve pain is more manageable or the pump and catheter aren’t as painful under my skin, that seed gets some nutrients to grow bigger.
My pump doctor has not been thrilled with this idea since I shared it with him, and has tried to delay the process until I saw my neurologist. I really believe he has been concerned whether this was the best decision for me.
He asks each time if I am sure and even last week wouldn’t schedule a surgery date once I have been weaned all the way off the baclofen. The seed got some water last week.
He has gone so far as to problem-solve how to get the pump refilled without insurance, and even found a solution last week for me.
Today, he asked if I still wanted to continue decreasing the dose in light of his solution. First, I thanked him for his efforts and told him that I love having an option should I change my mind as we near the end of this process.
While I have shared all the factors with him, I have never been really certain that he heard them. Today, I had his ear and shared the other factors that were involved—my pain levels, my bladder’s inability to spasm (a side effect of baclofen), and how that is already improving since the last decrease.
He remembered that I have never been happy with this pump in my body and said he suspected I would want to continue with the decreases. So, we decreased again—no math errors—and now I am receiving about 50% of the original dose.
Last week, when I got the call about the medication deal he was able to negotiate with his new compounding pharmacy, that seed of doubt grew quite large. It was getting fertilized and watered well.
But as you may recall, I was having a new week with new rules. I didn’t know where this new information fit or what to do with it.
Was this some universal sign that I shouldn’t do this? Was this a universal test of my resolve to follow my intuition that my body needs this pump out for a while to heal?
It made me really look at all the factors that contributed to my decision—again and to consider leaving the option dangling out there to change my mind.
I am not sure what it would take to change my mind at this point. Perhaps some magical solution to manage the nerve pain or some new idea for making the pump more comfortable inside my body.
Either way, now that there is an option, I find that the seed is just a seed. Seeds stay seeds if you don’t give them what they need to grow, right?
It was as if the validation of it being my choice and my body made my decision even clearer.
- The Past, the Present and Perception (thetawny.wordpress.com)
- Sunday Sum-Up #3 (thetawny.wordpress.com)