Originally posted 5 October 2018
Good evening, I hope this evening finds you well and as pain free as possible. I just wanted to update those who were interested in my progress after a series of pamidronate infusions.
I had a really good period after my second infusion, for several months, where my pain levels were low, and there were hours of some days where I felt “normal”. I even started weaning myself off my medication, getting down to slightly more than half of the dose I’d been on. The weaning off coincided with the third infusion.
Sadly, for the last week or so, I am right back to square one. Intrusive pain levels, though still lower than most, I think, and the pain is back to impacting my day to day life, making me more emotional, angry, etc. I’m also back to almost my full dose, with not much relief.
It’s pretty disappointing, but I’m hoping that this is just a phase, the same way as the good times are a phase, and sometime soon I’ll be going through a good phase again.
The third was my last infusion. ACC typically only approves three.
Looking back
I was so understated about my pain, in a ridiculous way. I remember this time – I was crying in the shower, crying on the bus, crying in the bathroom at work, just feeling totally miserable. And then I post that “it’s pretty disappointing”.
I’m actually not a fan of huge emotional outbursts but at the same time, it wasn’t healthy to suppress my feelings as much as I was back then.
