It has been an incredibly busy summer to say the least.
Besides the in’s and out’s of taking care of myself and work and training for triathlons and doing triathlons and a birthday, I’ve had a few things going on and really didn’t have a plan to pause for this day until last night.
And I decided on a milkshake.
When I was first in the hospital at Marin General, I was asked what could people bring me?
I said, ‘A milkshake.’
And over the course of the next week I got 20+ milkshakes.
How did I know I was loved? Milkshakes. At one point I had to make a declaration to my friends and family: okay, no more milkshakes.
I won’t dive into the details of how I was on copious amounts of drugs including oxycotin and didn’t poop for the first two weeks I was in the hospital and the rush of dairy and sugar probably didn’t help. I won’t dive into details .. and maybe I just did. 💩
When I was going into spinal fusion surgery for what would be 10 hours, I had the whole medical team around me and they asked, ‘Any questions?’ I only had one: ‘How soon can I eat after?’ The answer was, ‘Immediately, but you probably won’t want to after being prone face down for so long.’ I thought, ‘You clearly don’t know me.’
When I woke up, I was hungry. I don’t remember how soon after I had a shake, but I’m pretty sure Amy Shaw & Neil Fraiser brought it to me and it was the BEST milkshake in history.
When I was in surgery and recovery, my friends wrote updates on my progress. As soon as I was able, I started writing regular updates myself. They’ve really fallen off since accomplishing the triathlon goal, and even prior they were more about triathlon training.
I know that some of you whom I communicate with less frequently are a little unclear on where I ‘stand’ physically at this point. So here’s a basic update:
I’ve regained feeling below where I was originally as a T8 complete – that’s the official classification meaning that I lose function and feeling below the nipple line, with no feeling or control below that. If I were classified ‘incomplete’ there’d be some sort of function or feeling below that T8 vertebrae.
Leaving rehab in December 2015 I was a T10 complete, so I regained feeling and function down to about the bottom of my rib cage.
Today I don’t know if my official classification would change, but I have a good amount of feeling down to my belly button. I have control of most of my abdominal wall in the front, but lose sensation at the bottom of my rib cage in the back. This level (T11) is the first vertebra that has screws securing my injured vertebra (L1).
The videos of me in the Exso Bionics and ReWalk exoskeletons are exciting, though they’re not meant to train me to walk again anytime soon. I have zero control of my legs at present. Walking in the exoskeletons are great for keeping the legs/bones strong, increasing blood flow, and helping with bowel and bladder movements.
My flavor of spinal cord injury comes with an insane amount of neuropathic pain. Basically I have a band of pain that starts at my spinal fusion and wraps around to my belly. Below that point I have leg pain that feels like my legs fell asleep but times that by 100. It can be debilitating at times – especially getting up out of bed in the morning when I’ve been sedentary for so long.
The maddening thing about neuropathic pain is that it’s not real. By that I mean, my legs don’t really hurt. The spinal cord damage I sustained is sending false signals to my brain. So it’s like the transmitter is broken, not the actual body part.
I had been taking Neurontin and a small amount of the infamous Oxycodone for the pain. But as expected, over time my body got used to the amount I was taking and requires more to give me relief.
I have zero desire to take more of either of these drugs. One of the ideas I was told by my physical therapists is that in some cases you find a new tolerance and your capacity for pain becomes a new baseline. I’ve been playing with this idea ever since. Basically the pain level that I couldn’t handle in the beginning – and would probably cripple the average person – could be my new norm.
I’m proud to report I haven’t been taking Oxycodone for nearly 10 weeks now. I still take the Neurontin, occasionally testing less amounts.
Some days, I succeed and remain productive throughout the day. Other days, I’m done by 3 pm and usually have to lay flat for an extended nap.
I’ve tried a few months of acupuncture, different high CBD medicinal marijuana varieties, along with many other suggestions. I continue to test different remedies. I’ve focused on CBD, but haven’t found the right mix or form for my body yet. I need something that alleviates pain, but doesn’t put me to bed.
There’s a lot of insights and updates – both big and small that I am furiously writing. Especially riding the hill I crashed on not once, but twice in the last month. Stay tuned, I have a steady stream of posts coming out in the coming weeks and months. I would love to know what you’re curious about. Let me know.
BTW: have a pain remedy or CBD recommendation? Leave it in the comments below. Interested in what will come out…