Because One Treatment Would Be Too Easy

It’s been a while since I last blogged. Not because life’s been particularly exciting — unless you count fighting with insurance, adjusting meds, and feeling vaguely dizzy as “exciting.” But here we are.

My blood PHE levels went up. For the uninitiated, that’s bad. High levels = not ideal for brain function, mood, memory, or basically existing. So I’m now on what I’m calling the throw-everything-at-it protocol:

• 1 formula a day

• 2 injections of 40mg Palynziq at the same time, like a real overachiever

• 16 Kuvan pills daily (which taste like spicy lemons — nature’s punishment for optimism)

  
  

Insurance originally said no to both Palynziq and Kuvan. But then my doctor mentioned I’m trying to get pregnant, and suddenly the approvals department discovered empathy. We filed an appeal and, miraculously, I’m now approved. Never underestimate the power of “trying to conceive” in a medical file.

I haven’t done bloodwork yet on this new combo, but I’m feeling weak — the kind of weak that suggests either my levels are coming down or my body’s staging a quiet protest. Hard to say.

Mentally, it’s disorienting. I thought I was moving forward with Palynziq. Now I’m back on formula and Kuvan, like a poorly written sequel where all the character development gets undone. Still, if it helps — even a little — I’ll take it.

That’s all for now. Just me, my needles, my lemon fire pills, and a big bottle of formula. Will update again once my blood gives us something to work with.