diamond art

 I try each night to make an effort to sleep on my side. As sleeping on my back will lead to irritating the chiari malformation in the back of my head.  I get headaches from this in the back of my head and sometimes on the top of my head on both right and left sides. Through a strange miracle I took pain medication and it worked after a few hours. This was a random miracle because lately, with chronic pain the relievers I've been taking haven't been working at all. 

Besides the occasional Nintendo therapy, drawing, and books, I recently was introduced to Diamond Art: Diamond Painting & Diamond Art . These are time consuming and a good escape from pain issues.  I'm still getting used to the dot/pen technique. It does pass the time. The only downside is it is a little messy. Dots can get everywhere. The one I'm working on is below:

And today, 1/13 - I successfully slept on my side and didn't have any head pain or shunt issues today. I can move my head from side to side and don't feel pain from the shunt valve or distal catheter. 

7

Today is the first day in seven days where I don't have:

Pain from the shunt valve

Pain on the side of my head 

Pain in the back of my head from the chiari malformation

Nausea from the distal catheter in my stomach

Pain behind both eyes and when blinking

Occasional eye misalignment 

TMJ issues with a side of knocking inside my head from my inner right ear to my left ear. 

The pain medication (Curamin, CBD or Advil) I use in my attempts to cope with chronic pain from my injuries in 2014 and from my programmable shunt valve.  Sometimes these things works, other times like the last week, did not do anything to alleviate my pain. 

It made me sad and angry. 

There is no way of knowing what the shunt is doing. I'm just one of many people who have a shunt in my brain and we just don't know when they will become obstructed again or become infected or fall apart. I suspect this week it was responding to the weather and barometric pressure such as the upcoming rain and there's some sort of storm approaching from the West coast. There was also a partial lunar eclipse this week.

Millions of children and adults with all types of medical devices including programmable shunts experience similar or the same symptoms when these these things occur in the atmosphere. 

Last night, the pain was bothering even after taking pain reliever and I was able to play some video games like Super Mario Brothers 2.  

The first thing that brought a smile to my face this week despite chronic pain issues was the early sight of brown Santa Claus.  It's wonderful to see different representations of Santa decorations. 

The second was music from Ghostbusters 2.

I have had one good day this week to enjoy before my shunt decides to become unruly again whenever that may be. 

nor'easter 2021

 I had shunt issues during the Nor-easter last month. I all day I had dizziness, shunt and scalp pain. Medications didn't work again....

Like many people of all ages who have a cerebral shunt we are constantly worried about when the shunt will stop working again or become infected. 

I recently was watching two different documentaries, one was about wrestling and the other football and how the players have to deal and manage chronic pain from injuries they sustain from playing football or wrestling. 

Today, my shunt is behaving itself despite the weather being cold (32 degrees) outside. 

One week special

 For about a week, I've had pain on the shunt valve, pain along the distal catheter down into the side of my neck and some nausea from the distal catheter in my stomach. It seems the shunt was making some sort of adjustment, this time without beeping sounds. I also had elevated csf pressure in my forehead, pain behind both eyes and pain on the top left side of my scalp. I believe as I've mentioned in previous posts, that the nerve issues I have on the top left corner of my scalp could be 'phantom limb' issues from my injuries in 2014. 

I went to my local Brain Injury Awareness walk which was in person this year. Last year, because of the pandemic, it was virtual only.  It was wonderful to be around the many people impacted by brain injury.

Yesterday, I had chiari headaches in the back of my head and it's continued into today. There's also been the occasional ringing in my right ear that travels throughout the center of head. I took pain medication this morning which has helped  a little with the pain, although I feel dizzy in the back of my head.  Tomorrow will be better.

shifting eyes and walking

 My shunt's been behaving itself the last few days. No pain from the valve, distal catheter and no pain from different parts of my scalp and sides of my head. Today, my right eye misaligned a few times in the evening. Besides having minimal to no shunt pain this weekend, I enjoyed this song from The Lego Batman movie, the music and the video together just makes me smile. 

buttons

Pain medication worked yesterday for my shunt pain. Today, I've been dizzy and I've had some double vision issues and pain on the left side of my scalp. 

The highlight of my day today was seeing a butterfly outside and getting to a new level on the Felix the cat video game for Nintendo. 

Since I have no plans today and I don't feel like going anywhere because of chronic pain issues, looks like it will be a day of reading and maybe a possible Batman The Animated Series marathon...

9/5/21 - woke up this morning with chiari malformation headache in the back of my head, forehead pain and distal catheter pain at the top of my head and some pain behind my eyes. Pain medication didn't alleviate all of discomfort....Looks like it's back to reading and watching animated tv shows...

In September...

It's September and that means is is Hydrocephalus Awareness month.   I made a film about my own brain injuries while having shunt revision surgery in March 2014. My story is just one of many people who live with hydrocephalus.  I started filming in 2013 because I knew something was wrong with my shunt and I figured making a short film about what I was going through would be a way to spread awareness about hydrocephalus. In 2014, after I had multiple brain injuries while having shunt revision surgery, I decided to keep filming while I was in rehab.

For the month of September My film, Shunt Chronicles, my brain, art and school can be viewed online:  Shunt Chronicles on Youtube