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Saturday, October 4, 2014

"He who has hope has everything."

I've got a few updates to relay this weekend and hopefully will have even more in the next few days and weeks.

As explained in my last post, I underwent some occipital nerve blocks (field block) last Friday at Freedom Pain Hospital. I was instructed to monitor my pain over the next few hours, like I've done with all previous nerve blocks. Unfortunately, I didn't experience any changes in my pain level...although my head DID go numb (which hasn't been the case with previous occipital nerve blocks). So the positive is that now I can at least cross the occipital nerve off the list of potential pain sources.

Now for some good stuff. Get ready!

Last week, I met somebody rehabbing at EXOS and we got to talking about some of the overlap in our symptoms and treatment paths. Ryan has been on a truly incredible journey that started 8 years ago with 5 brain surgeries (including a craniotomy) and has included a host of additional health issues over the course of time (including migraines). He shared with me that after his last brain surgery, doctors told him that his life would be very limited. Through what I only imagine to be the most grueling and character-defining process, he defied the prognosis his doctors gave him and set out to regain his life, which included learning to walk and talk again. Quite honestly, hearing his story makes my the journey I've been on seem like an f-ing walk in the park. But in the few conservations we've had, I've felt so inspired by his mindset, which embodies hope, perseverance, and a refusal to quit.

After chatting about my (unsuccessful) experience a few months with medical marijuana (sublingual CBD), he suggested that I give it another shot but this time try a strain containing THC. I have my medical marijuana license, but really had no idea how to go about figuring out what, how much, and what method to try. Thankfully, he offered to help me navigate the process. Last Saturday, Craig and I were sort of "rained in" (sorry, it's an Arizona thing). My plan was to get a vaporizer but I hadn't been out to get one yet, so we decided to take on a fun little rainy day project of making me some special brownies. (To our credit, it's a nice indoor activity.) After a nerdy amount of research, we had successfully created our pot-infused coconut oil and I whipped up these bad boys. Special or not, they're delicious and you should make them. (note: naturally sweetened with dates but I omitted the vanilla stevia, and replaced with pure vanilla extract and a little coconut sugar).

Trying to err on the side of caution and monitor my response, I ate just a few little pieces Saturday evening. I felt tired, but no changes in my headache. Sunday morning and mid-day, I ate a few more. Feeling sleepy again, I laid down to take a 20 minute nap. When I woke up, I definitely felt different. Craig and I left for a mountain bike ride and I knew from the second I got on my bike that something amazing was happening. I took off the on the trail and for the first time in a long, long, LONG time didn't feel totally wrapped up in my head pain. It was still there, but the pain low enough that it felt like background noise. After the first segment of our ride, I hoped off my bike. When Craig caught up to me, I was burying my face in my hands and to my own surprise, was crying....out of HAPPINESS. I can't describe how incredible it felt...for both of us! The last day that my pain was that low was October of 2012, for one day after a treatment I had with Anna. Two years ago!

I knew realistically the relief was temporary, but in the hours that followed, I was 100% okay with that. Mentally, I've struggled for a long time with believing that my body was capable of not having a headache, and this episode (which lasted into Monday morning before creeping back to normal levels mid day) was the glimmer of hope that I needed. It solidified the notion that less pain was possible.

Despite eating a fair number of brownies the next few days and subbing my regular coconut oil in my morning smoothies with my new special coconut oil, I wasn't able to recreate the effect. That wasn't too surprising though, because I knew that ingesting edibles would be much harder to titrate and regulate dosage. Later in the week though, I purchased a few more types of marijuana and started using a vaporizer pen. So far, it's definitely making some impact (taking the "edge" off my pain, if that makes sense), which is awesome, but I need to keep experimenting with different combinations and amounts to figure out what will work best. To anyone reading this, it might be difficult to appreciate just how significant this is for me...but as a reminder, no medication, no invasive procedure, no therapy that I've tried in the last couple of years has provided ANY (ANY!) relief.

This past week, I also had my cardiology and pain psych evals to clear me for the ketamine infusion therapy, which I was supposed to start this coming Monday, but Dr. Dodick at Mayo wants me to wait until after my appointment with him this coming Wednesday so we can chat more about it. Assuming he gives me the go-ahead, I'll now be starting the ketamine a week from Monday. I'm scheduled for all 5 days but we'll re-evaluate based on my response at the start of treatment.

Finally, Craig and I decided that since I haven't had much soft-tissue work done in a while, specifically on my t-spine, it might be a helpful complement to some of the other "central pain" therapies I'm trying. I've talked before about the pain-spasm-pain cycle, and feel pretty confident that a lot of the musculoskeletal dysfunction I have going on in my neck and back is a result of being in pain, but I think targeting all parts of the cycle can still be helpful.

I saw Jeremy (soft-tissue specialist at EXOS) three days this past week. I'll leave you with this and apologize in advance if you do choose to look. It ain't pretty.

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