Pain Management: Resistance, Acceptance, Fight, & Surrender

It seems these days, we touch base with our palliative care doctor weekly as we continue to strive to keep Soraya out of pain... and this week was no exception.

Pain management has brought on some complicated feelings that I’m still sorting out. What I DO know is that it's awful watching your child suffer and to have to give/change pain medication so often.

When we picked up Soraya's new prescription last week, we were also required to pick up Narcan. While this makes complete sense due to it being a controlled substance, it truly caused me to pause and reflect on the gravity and depth of her pain…

As I work hard to accept that Soraya needs this medication in the first place, I am also dealing with the resistance and fight to just GET her this medication at all.

First, we fought to get prior authorization from the insurance company. Then we fought to get authorization from the pharmacist—who may not know Soraya’s complete medical history but certainly knows enough to dispense the medication as ordered—who STILL wouldn't fill the prescription on their shift. Safi sternly educated them when asked, Why would a child need pain meds like this?... and yet it was/is still a battle to get her the treatment she needs to be comfortable.

This constant push and pull of attempting to overcome my initial resistance, striving to work toward acceptance of the situation, and the literal battle to access these pain meds have my feelings in tangles...

The reality is that we are in uncharted territory. I am a pediatrician but know very little about narcotics. This process of pain management is a complete surrender.

I am surrendering to the side effects of these medications – extreme fatigue, a decreased drive to breathe, chronic constipation, etc.

We are increasing Soraya's meds again today… I hope for no suffering and to still see glimmers of her bright personality 🙏