32 Shots and a New Kitchen Sink

It turns out that when the fog of a 26-year headache starts to lift, you don’t just sit around—you renovate a kitchen and write a novel.

This past Friday, I made the trek back to Johns Hopkins to see Dr. Rahman. We had a bit of a “state of the union” regarding my progress since starting Emgality in October. 

The most surprising takeaway? The creativity is back. Despite a grueling work schedule (50.5 hours this past week alone!) and the constant “prior auth” hoop-jumping, I’m actually in a better place, and I hadn’t seen it until I started talking to him about it.

The Kitchen Project

Steve and I have been chipping away at my kitchen after hours. It’s a slow-and-steady process. We work just a few hours at a time, so neither of our bodies gives out. But the progress is real. As of tonight, the upper cabinets are up, and the lowers are in! I’m currently living without a kitchen sink, but Steve is determined to get the new one plumbed in before he heads out for a well-deserved cruise next Wednesday.

The Romance of Progress

On the creative side, the next draft of my romance novel is gaining steam. I finished the first draft a couple of weeks ago, and now three new chapters are down. There’s even new music on the horizon (stay tuned for that). It’s amazing what happens when you aren’t fighting your own nervous system every second to get through a day.

The New Math: 32 Shots = $1,302

Of course, it wouldn’t be Pain & Protocol without a new medical hurdle. Dr. Rahman has ordered a specific regimen of Botox for chronic migraine and NDPH. Every 12 weeks, I’ll be making that 5-hour round-trip drive for a series of 32 injections across my head and neck. I’m no fan of needles, and while they tell me the “bore” is tiny—more like a mosquito bite than a flu shot—the sheer volume is daunting.

Then there is the “sticker shock” for the rest of the world, the list price for a 200-unit vial of BOTOX® currently sits at $1,302!  The reality is that without my “awesome” insurance, this would be another six-figure ransom over a lifetime of treatment.

I am hopeful, however, that starting Botox for chronic migraine and NDPH alongside my Emgality will be the “knockout punch” my nervous system needs. But for tonight, I’m trading the keyboard for a pillow. Between 5:30 AM start times at work and kitchen construction in the evenings, this advocate needs some sleep.

Until next time, the fight continues, one cabinet (and 32 needles) at a time!

Chronic pain doesn’t stop, and neither do I. Follow every step of the kitchen reno, the novel, and the medical battle at The Pain & the Protocol Blog.