Showing posts with label #sailormoon. Show all posts
Showing posts with label #sailormoon. Show all posts

Saturday, September 9, 2023

in the summer

September is hydrocephalus awareness month.  During the summer, I attended a Pediatric Hydrocephalus Conference. It was great meeting other individuals and families who are living with hydrocephalus.   Always nice to talk with others who truly understand what it's like to live with this chronic illness. 

It was 10 years ago this month that I started making a short film about my shunt as it was doing some weird things inside my head. At the time, I didn't' know it was on the wrong side of my brain. I later figured this out on my own in March 2014. 

Whenever I talk about my brain injuries with anyone, I always emphasize how you have to listen to your gut, as it doesn't lie to you. Had I not listened to my body back in 2013 when I felt vibrations inside my head and on my spine, I would not be here. Had I not advocated for myself and insisted my neurosurgeon do surgery, I would not be here.  I later fired this doctor ( since he wasn't taking my complaints seriously ) and he got animated in my film. I always tell people if you can't advocate for yourself, then get someone else to do this on your behalf.

Like any brain injury survivor, you're just never the same afterwards. I've been having walking issues again and I'm back in physical therapy.  With chronic pain issues in my head and leg this week, I found myself again listening to movie soundtracks such as Treasure Planet (2002), Blue Beetle (2023) and Sailor Stars (1997). 


Sunday, February 6, 2022

with pink hair

 The cold weather has been making my shunt and head hurt this weekend and last week during the ice storm. Today, there's been an improvement, the pain medication is working, there were a few days like last weekend when nothing was working on the pain. 

This week, when dealing with chronic pain, I turned two songs in Japanese from Sailor Moon S  and Sailor Moon Super S.

Also, this week I wrote to the board of neurosurgeons inquiring about what things were being done to prevent mistakes in the operating room and ways to monitor when a cerebral shunt will stop working.

I had used my experiences in 2009 and 2014 as examples of what needs to be improved. 

We'll see if and when I hear back from them....