fog and then some

 The ice storm last weekend left me with chronic pain from both my head and cerebral shunt. Today there's pressure in my forehead and pain on the shunt valve. The fog yesterday and earlier today only added to the pain issues. The walking issues have returned briefly this week with my right leg crossing over my left leg. I've become better at paying attention to this, as I can stop myself from falling forward.  

 This afternoon, I feel pain on the shunt valve, pressure in my forehead and pain behind my right eye. 

 The right eye pain is an improvement from last week, when I had pain behind both eyes.  

I managed to get some drawing done today which was a huge improvement from last weekend, where I couldn't do anything because I was uncomfortable. 

I met with my local brain injury recreation group this week. It's always nice to be around others who understand what it's like to have a shunt, chronic pain and other issues associated with living with a brain injury.

8th

 This week in March marks eight years since surviving multiple brain injuries and being shunt revision surgery free. I wrote about my injuries while in rehab.

I made a film about my injuries to spread awareness about brain injury hydrocephalus. I made a short film about my injuries: www.vjbrockett.com

Of course, as I do every year every brain anniversary, I enjoy a cupcake from Barnes and Noble cafe.

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.... 

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.