Back in July, our (then 10-month-old) daughter, Ryan, started a form of survival rescue swim lessons called Infant Swim Resource (ISR). Maybe you've seen one of those videos on Youtube of a tiny baby just floating on their back in a pool?
There is a parenting philosophy that has resonated with Craig and I from the start of Ryan's life, called "Respectful Parenting." We try, as best we can, to always validate Ryan's feelings. So when she gets upset, whether from an inevitable tumble on the hard ground or because she's REALLY not in the mood for a diaper change, rather than soothe her with a "it's okay, don't cry, you're fine" we try to simply acknowledge how she's feeling without judgement. "I know, you were having so much fun playing and didn't want to stop to have your diaper changed, did you?" It doesn't mean we agree with or share that emotion or that we're even trying to "solve" a problem for for her, rather, that we understand whatever it is she's feeling and we're there for her.
So during our car rides to ISR every morning (yep, five days per week), I had gotten into the habit of giving Ryan a little pep talk. Despite her love for the swimming pool during the first ten months of her life, she had made it abundantly clear right from jump that she wasn't feeling this learn-to-float business. I couldn't really blame her. They're not meant to be splish-splashy fun pool sessions, but drowning prevention lessons. I'd calmly explain to her the reasons we were doing this; how these skills she was learning would help keep her competent, confident, and safe around water and how I would be there to support her the whole time. She would typically respond with a soft "baa. baa" (translation: put "Baa Baa Black Sheep on and turn that shit up.)
As we'd arrive at the pool and she'd start getting upset, I'd never tell her not to cry. I would just say, "Ryan, you are so brave. I know this is hard. You can do hard things."
This is hard. You can do hard things.
And she did! It took about 8 weeks but the girl learned to float. And I can't tell you the peace of mind that gives us, as parents, especially here in Arizona where just about every backyard has a swimming pool.
Anyway, all of this to say that I've had an incredibly difficult last few months of pain and can't tell you the number of times I've repeated that line to myself. Maybe it carries more weight than any all the inner dialogue that came before just because I'd feel like a complete hypocrite for not believing it.
When I last posted in July, I was getting ready to have bilateral medial branch nerve blocks at C2-C5. I responded fairly well to those diagnostic blocks, which warranted the radiofrequency ablation (RFA). An RFA in a procedure where the physician uses heat from radio waves to treat inflamed facet joints. It's minimally invasive but still performed in the surgery center and because of the location of these specific nerves, requires conscious sedation (i.e. the first nap I've had in a long time). You lie face down on the table and under x-ray guidance, they insert a tube called a cannula into the spine, to the medial branch nerves. These are the nerves that carry pain signals from the facet joints to your brain. Once in place, an electrode gets pushed down through the cannula and heats the nerves with radio waves, blocking their ability to carry pain signals.
I had my first RFA in September and the second side performed a few weeks later. My doctor had explained that it can take up to eight weeks to really feel the effects, so I stayed hopeful through the fall that this procedure might help, even if just a little. Oh what I wouldn't give for even just a little!
Unfortunately, that wasn't the case. My pain levels haven't budged, with the exception of a few multiple week-long spikes where they shot above and beyond even my "normal" high levels. Interestingly, you can even see these flare-ups from the surface of my skin. We don't know exactly why this occurs, but hypothesize it has something to do with my body's sympathetic response. Kind of wild.
I can't explain how difficult it is to fall asleep at night, feeling absolutely suffocated by what feels like power drills gnawing through my temples, an unrelenting ache spread deep into my eye sockets, across my forehead, over my scalp, and crammed in to the base of my skull. With my head sandwiched between ice packs (that I'll replace throughout the night as they lose their numbing power), I wake up the next morning with the realization that a new day is starting the exact. same. way. No end in sight. No breaks. No breathing room. But also, a life waiting for me on the other side of the alarm clock. A body that needs to break a sweat; that needs more than anything to stay strong and resilient. A husband who loves me. A dog ready for her walk. A swing to push. Meals to cook. Books to read. A little girl who needs her Mama ... and Mama who needs it all the most.
This is hard. You can do hard things.
I had a good acquaintance ask me recently whether I was still "getting my migraines." If only my pain was plural. That'd mean it went away and returned. But that'd still mean it went away. I gave her the most appropriate-length update to which she responded "well at least you can still function, right?" Ooof. I mean, I get it - especially when, from the outside looking in, I live such an active and full life. And of course appreciate her intentions/understand that maybe there is no "right" thing to say. But it still hit me like a ton of bricks. Still functioning? What exactly is the alternative?
Before I get ahead of myself, I should mention that there's essentially no update on my stem cell reinjection. Grand Cayman's borders reopened in early fall but in limited capacity, which doesn't make medical tourism feasible. Dr. Centento's Regenexx office is hoping to reopen in early 2021, but like everything, the timeline is TBD. In the meantime, it's full steam ahead with any and all treatments that could possibly help make things more manageable.
After reconvening earlier this week with Dr. O'Connor at AZ Innovative Pain (who performed my RFA), we decided the next step to try will be a cervical epidural. This will consist of injecting a steroidal anti-inflammatory (also under x-ray guided fluoroscopy) into the epidural space that surrounds the nerves. Interestingly, this injection actually targets the junction of C7-T1 (where the cervical and thoracic spine meet), and the medication disperses throughout the cervical spine. They use contrast dye so they're able to see exactly where it's traveling.
I'll have my first of three cervical epidural injections in a couple of weeks and subsequent ones two weeks after each other. Dr. Cooper did explain that they have a cumulative effect. So we'll see how I respond to those and then go from there.
On the non-interventional side of things, I had an evaluation earlier this week with a Z-Health practitioner. Z-Health is system of rehab based on functional applied neuroscience. Their "neurocentric training" approach can best be understood by these concepts...
3 basic steps are required for the human nervous system to create movement and control posture. The peripheral and central nervous system must:
1. Receive input signals from sensory systems
2. Interpret the incoming signals and make a decision about what to do
3. Create a motor output
The vestibular system is obviously one of the most important input systems into your brain and when issues arise, as they commonly do with head and upper cervical injuries, the peripheral aftermath can be significant.
Though I don't at all have full blown vertigo like I did in the six months following my bike accident back in 2011, I do get dizzy way more easily than I should. And the higher my pain is, the worse it is. Even just watching someone else's movement from a distance can be enough to trigger me. Just the other night, we were sitting at the dinner table and Ryan decided to shake her head back and forth (she loves to feel those flowing locks, which I think grow an inch per week, brush against her face). A few seconds of watching her felt to me what it might feel like for you to get off a spinning ride at an amusement park. Not great, I know. So even though I've seen vestibular specialists in the the past and gone through a range of appropriate assessments and even some ocular therapy (remember when we traveled to the Hruska Clinic in Nebraska for my PRI treatment?), it still seems like this is something we've got to dig into a little deeper. I plan to write more about this after I have a few training sessions under my belt. Or should I say, under my fanny pack? (It's part of the Mom uniform and I love it.)
So that's it for now. As always, here's to hoping some progress can and will be made soon. And in the meantime, I can do hard things.
