Monday, October 15, 2012

Remember to breathe

I know that our bodies were made to thrive only in pure air, and the scenes in which pure air is found.
-John Muir
This project began about 9 months ago, to show what it means to have a brain injury and raise awareness about about the work SBI does.

At that time I was pretty sure all I needed for myself was to find the right neurologist and get a recovery plan in place. Until that happened I was going to ride my bike.

Climbed a lot of hills, posted on this blog. Spoke at the SBI auction from Route 66. Check check check. But sadly, boys and girls, a complete dead end on the medical help and recovery plan!

Who would have thought that the hard part would not be riding a bicycle thousands of miles (safely) in unfamiliar territory. Or writing 155 blog entries (with photos). Or using FaceTime over a WiFi connection to project my face and voice at an event hundreds of miles away.

The hard part would be getting some f---ing help. I'm still working on it.

The fact is there is no right neurologist. Their charter is not to help you get better, nor refer you to appropriate help. (What DO they actually do?) A contact at SBI says the next step is to find a rehabilitation doctor, someone to oversee and facilitate recovery. OK, I can do that. Have to go through a clinic to get the referral. Uh huh. 5:45pm tomorrow.

The same contact recommends a treatment, hyperbaric oxygen therapy (HBOT). The idea is the exact opposite of being outside in the Sierras, breathing thin air. You lie inside a bubble and breathe pure O2 under pressure. On the phone, the person at the San Francisco Institute of Hyperbaric Medicine says they've had extremely positive outcomes with closed head injuries.

That's the good news. And it sounds very, very hopeful!

The bad news? A treatment this promising has to be, um, progressive. Hardly any MDs recognize it (focused as they are on a canon of nothing useful). And you need a prescription. Insurance doesn't cover it for head injuries. It's 5 days a week for 2 months. In San Francisco. And it costs more than $7000.

That's with a discount for paying for 40 sessions, all at once. Did I mention I don't have any income?

Do they throw in a deep tissue massage with each session?

At the end of all this, my vocabulary will consist of one word and it will be f---. It's a real risk. We might be pretty close to that point, in fact. The blog definitely helps me practice other words. Thanks for listening while I do that...

1 comment :

  1. Wow - I know you were having trouble finding a non-lawyer-doctor (non-courtroom doctor?) but I hadn't realized it was this challenging. You've been very tenacious to wade through all the wrong doctors and all the information you're weighing to try to get help.
    It might sound silly, but you fundraised for your Route 66 ride. Could you do that again? Or are there... scholarships is the wrong word, and maybe grants is the wrong word as well, but something like that? Maybe SBI can advise on financial help?
    You are so strong to keep trying, keep working.