Monday, January 29, 2018

Dear shunt: I hate you, part III

Trip to 5 Wits
It's going to snow at some point during this week, I know this because I was checked the weather report. And as usual, my shunt is aware of the change in the climate outside and therefore cause pain and dizziness. Last month, I went with a friend to 5 Wits at my local shopping mall. Despite my shunt being unruly, I still managed to have a great time. This also allowed me to get out of the house.

Today there is right eye pain along with some nausea from the shunt.  I still went out to volunteer with my local Meals on Wheels and when I was done, I returned home to put my head down.

Oreos on a stick during wedding reception.
I noticed in some social situations, where there are gatherings of many people I get sensory overload. I didn't have this issue before my brain injuries. Sometimes I have a challenge with expressing myself like describing emotions.  This happens with speech and in writing. It takes me a while to hand write a note or letter to someone. I can feel the the information get stuck inside my brain and it struggles to get onto paper or in words.

It's frustrating.

Especially when in the moment, I may not realize why there's confusion inside my head only to realize after the fact what happened. I went to a friend's wedding this weekend was so happy to be there and like 5 Wits I had a great time. I still was able to recognize when I needed to be alone sometimes for cognitive reasons related to brain injury. Sometimes after a brain injury, the brain isn't able to filter all the information it's receiving at the same time. We don't realize sometimes how much processing we're doing on a daily basis.

I'm still trying to get used to this new brain/body. The learning continues...

Wednesday, January 3, 2018

Brain on Books

I had two okay shunt days so far this week. Today I feel dizzy, I suspect because we're getting a foot foot of snow tomorrow.  Putting my head down will alleviate some of the discomfort.

I finished a book yesterday called The Danger Within Us: America's Untested, Unregulated Medical Device Industry by Jeanne Lenzer. The book was recommended by someone on Twitter and I was able to get a copy from my library.  The Danger Within Us discusses the history of the American Medical System, problems which arise and are still continuing for patients and doctors. My jaw was on the floor several times while reading this book. Just in the introduction alone, I was stunned at what I was reading. 

I couldn't believe the FDA ( food and Drug Administration )  can approve medical devices ( cerebral shunts, stents and others ) without verifying whether these devices are actually safe to use on people or not.  As long as they work ( and $$ ) then that's what matters.  I knew this issue existed in the use of drugs and pharmaceutical companies. I've been given medications after my brain injuries in 2014 which were supposed to be for pain management. Several times some of the drugs I was given either gave me extremely depressed/suicidal or I had psychotic episodes. I also felt my shunt was reacting to the medications I was given.  The Danger Within Us also talked about medical devices which can be controlled wireless. What's stopping someone from hacking into a pacemaker from another room and disabling the device? Things I didn't think about until reading this book. 

It's only inspired me to write to my local legislative officials perhaps policies can be changed regarding medical devices and the care we receive upon having them inserted into our bodies.