I made it home from Stanford MedicineX 2016 yesterday. I spent four days in Palo Alto at Stanford University participating in this "Everyone Included' medical conference. I planned on writing about my experiences there pretty much as soon as I got here, but wow, I was pretty drained. Still recovering from four days of 12+ hours a day of intense discussion, active listening, participating and advocating.
One thing I learned quickly is that I really suck at live blogging an event. I gave it a quick shot, but couldn't blog and participate at the same time. I became very involved in pretty much every forum and panel that I attended, trying to soak everything in and experience everything that was going on. Here is an image that I found that was taken sometime on the 4th day of #MedX.
Another thing I learned is that after awhile, this much focus will trigger an increase in some the noticeable side effects of my medications. Somewhere during Day 3 the tremors started becoming more noticeable and it took me a bit to try and eat lunch and look mostly normal. I know I was in the one place where many would have understood and few would have really noticed. I still don't like to look like I'm having a hard time getting my fork to my mouth. Another side effect that really gained intensity as the weekend progresses was what I consider my film. It feels like there is a barrier between me and what's going on around me. I guess it's kind of like brain fog. Everything is vibrant inside my head, but what I experience of the 'real' world seems dulled. I hadn't really notice that until earlier this year when my immune system totally shut down and I ended up in the ICU. They had to take me off of a couple meds and significantly reduce others until my system rebooted. I was extremely ill, but felt awesome. As I resumed my meds, the film came back. I spoke with my Team about it and they agreed that it was a side effect of what I am taking. Now don't get me wrong, it's not horrible and all really is well. It's just that when it gets more intense, I have a harder time expressing myself and it takes a little longer to process conversation. The team at MedicineX tried to think of everything and provided a "Wellness" room for just such occasions. I spent some time in there plugged into my Pranayama App doing 8 second box breathing. That really helped and I was able to get back to it :)
Speaking of side effects... I've mentioned at some point in the past that at some point in my journey with Idiopathic Pulmonary Fibrosis (IPF), I lost the ability to do much in the way of math in my head. Math was very important to me, and I still hold out a little hope that it'll come back. I was talking about this loss and found someone else with the exact same issue. We both loved math and were doing advanced math early on, we both now have a hard time doing the simplest math in our heads and have to double check everything, and our neurologist both don't have any idea why. We've had the same tests, with the same results, and the same conversations with the brain docs. It was pretty intense finally being validated, that it really has happened, and that someone understands. We are each the first one we've ever met who share this issue.
I had a totally different title to this post, but it went a bit sideways. Hope you don't mind.
A post actually about MedicineX will be written soon. I promise :)