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. 

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

going on 5

This is the 5th day I've not had shunt pain and chronic head pain. This hasn't happened for months. No pain behind my right eye, which I learned is not from my strabismus surgery in 2015, it's from my injuries in 2014. During these days I've had TMJ and walking/balance issues. For now, I'm going to enjoy not wanting to remove my shunt from my brain and recycle it. This week has been a happy week which includes returning to art and movie marathons....

neck buzz

Pain management in my forehead has improved. Recently, I've been the left side scalp pain from my injuries has returned. This morning, I felt a pain run up my neck and around my head. Something I've never experienced before. Then it went away and I didn't feel it again for the rest of the day except for the occasional scalp pain on the left side of my head.  

The recent rain and thunderstorms are not helping. 

What brings me joy when I have head issue is this song from The Lego Batman Movie. Hearing and seeing this music video makes me happy. 

Tornedo warnings in my area this evening made me think my programmable shunt valve could have been responding to it. I like many people with medical devices, can feel the changes in weather outside. 

Tinnutus and the sculpture

My visit to see Journey to Freedom in 2021

This morning I had an episode of tinnitus in my right ear. I started having tinnitus after my brain injuries in 2014.  This was jarring to experience as is hasn't occurred in a few months.  Totally felt like I had been hit inside the head on my right side with a whoosing sound moving from the inside of my right ear through the middle of my head. 

It lasted for what felt like a very long five minutes and was quite disorienting. The last few days I have been having balance issues and my feet have been getting confused. 

These symptoms are just one of many that I and millions of others experience after surviving a brain injury.                                                           

Recently, I was able to see the Harriet Tubman Journey to Freedom Sculpture which was making a stop in my area. The sculpture will be touring several states thru 2023.  Harriet Tubman is also a traumatic brain injury survivor.   

palm trees and metal

I've discovered a new Nintendo game, Hudson's Adventure Island II. I love characters, music, and the game play. They even have happy game over music. It's just a joy and fun to play this and a good escape from my chronic pain issues. 

My shunt has been behaving itself the last few days. I had some double vision this morning when I turned my head, occasionally my eyes become misaligned. TMJ issues today along with tinnitus. I attempted to build a puzzle over the weekend and came to realization I needed more table space. I wonder how my new brain will process constructing a puzzle. Haven't done one in years prior to my injuries. 

I was at a doctor's appointment recently and the nurse commented on my medical ID bracelet. She told me she doesn't see them very often and that it was a good idea for me to be responsible for my health. There are several places where you can purchase one here are some examples: 

Medical Alert Foundation 

Medical Alert Bracelets

Lauren's Hope

American Medical ID

dizzy with a side of pizza tv

In the last week, I've two days that were pain free. Today, I realized I still have numbness around my mouth. I have csf pressure in my forehead, chiari malformation headache in the back of my head, some tmj issues in my right ear and of course, my personal favorite, balance issues when walking and standing. This makes me sad, most often when they happen often. Especially since I remember not having these issues before my brain injuries in 2014.

What makes me smile when I have chronic pain and to escape briefly from the global pandemic?  Samurai Pizza Cats, puzzles and listening to birds.  

right eye and a slice of apple

 After having a conversation with my neuro ophthalmologist last year during a check up with my right eye....He told me the pain I have occasionally behind my eye is not from my strabismus surgery in 2015, rather it's from the injuries I had in 2014. I would hope this is different in the afternoon. I was hungry around 3am this morning only to have chronic pain and hoped for like a second, that it would go away once I finished part of my apple. I've taken pain reliever this morning and yesterday....there's been little change. What makes me feel a little better...a sugar free chocolate chip cookie...

7th with tea

This week ( on 3/6/21) marks seven years since surviving multiple brain injuries during a cerebral shunt revision surgery in 2014. I made a short film about my injuries a preview is available here.  I've had barometric pressure headaches and shunt pain a different times this weekend and into today. Right eye pain with pain along the distal catheter at the top of my head with some nausea. I suspect my shunt is adjusting itself today....something it does when the weather changes or if I stand up or sit down. As I do every year, I had a birthday pastry, deciding on a muffin this year with a side of tea.   

right eye rebellion

Recently, I went to my local aquarium and saw brain shaped coral which is totally appropriate for this blog and this month, as it's Hydrocephalus Awareness Month.  

Brain shaped coral at the aquarium

Visiting the aquarium was a great escape from chronic pain issues. My right eye is still adjusting to my new eyeglasses. There are times when it has drifted to the right side if my head on it's own and images split in front of both my eyes as they did when I had double vison for a year and 12 days in 2014 and 2015.  

The last three days I've had pain on the shunt valve, nausea and pain behind my right eye.  It's around 1am where I am right now and I can't sleep. I am

Myself out for a walk on 
a pain free day last month. 

 sitting by my sofa with my cat because of chronic pain issues. I've also been having sound sensitivity in my right ear. After my injuries in 2014, it caused several changes to my nervous system including TMJ and hearing issues in my right ear.  Sometimes I am sensitive to sounds, like this morning, it's raining and the sound of the rain is bothering me. 

I move my head from side to side and there's pain. It's 1:55am. 

One day this week so far....

Right eye pain, nausea, pain on sides of head and shunt valve pain for the last few weeks. Friday 7/17 there was a thunderstorm which only added to the discomfort with my medical device. No pain yesterday which was a small miracle and welcome relief.  Today I have some shunt issues with the heat and pressure in my forehead. The pandemic has made me draw more which makes me happy and distracts me even for a minute from chronic pain issues when they arise. Alternative therapies for coping with pain are great when they work. During long periods of pain I often get sad and angry.  It's a reminder of what happened to my nervous system and how things will not be the same again.  Sometimes I'm happy and grateful to have survived other times I cry because of how it's changed everything. 

The happy return

No shunt or head pain yesterday and today. Last Friday was the first pain free day I've had in a long time. And an added bonus, I'm not feeling any pain before the weather changes tomorrow, we're getting thunderstorms...

There's a chance I'll be volunteering again from a home. Soon, I'll be able to make greeting cards for seniors who get their meals delivered. 

copper and the eye

Less dizziness more shunt pain. My shunt has been adjusting itself the last three days. I know this because I've had the following symptoms: Throbbing shunt valve pain  along with nausea and pain from the distal catheter at the top of my brain and pain behind my right eye. I saw a commercial today for the copper belt.

Part of me wishes for second I could wrap this around my head to relieve my chronic pain. 

Yesterday, I watched a webinar from the Brain Injury Alliance of New Jersey. They were discussed mental wellness during the COVID 19 pandemic and how to cope. They talked about feelings of hopelessness, isolation, anxiety and panic attacks which people are experiencing now during the pandemic. They made comparisons to how these feelings are similar in many ways to recovering from brain injury. I hadn't realized this until the speaker started talking about how the act of putting on a mask and gloves to protect yourself when going out in public is similar to having to get prepped to go into the operating room.

I really enjoyed this webinar and I feel others will find it helpful as well. Their website posted the slides from the Covid19 in their webinar archives. These can be viewed below the webinar link.

Mental Wellness During COVID 19 and Beyond

outside

Pain issues have been minimal the last week, which is a nice change for once. Recently, I had a video appointment with my neurologist and she suggested I try and put pain cream on parts of my head and  when I feel discomfort from my shunt or elevated csf pressure in my forehead. I'll try this and we'll see what happens.

Less pain, more dizziness for me this last week.  I experience this when move my head from side to side or when I am sitting, standing and everything else. Now that it's getting warmer and more humid outside my shunt ( which is magnetic) responds to the warmer temperatures. If I don't wear a hat outside when it's very hot and humid, it can cause different issues with my medical device like fainting and disorientation.

I can't volunteer because of the pandemic. Like everyone else, I'm home unless I make a trip for something essential like to the grocery store. My local Stop and Shop has a robot,  I think it's name is Bob or something... The robot has made me paranoid because of my shunt. I don't feel magnetic waves off of the robot like I do when I walk by a pest repeller on a wall.  I avoid the grocery store robot as much as possible. At one point, I thought it was following me in the produce section....

The pandemic has made me (along with millions of other people) anxious about going anywhere, outside. I can only wear a mask to cover my nose and mouth for short amount of time.

My local brain injury association has free webinars to help people cope with this pandemic.

Another great way to help all of us who need it now:

Brain Injury Alliance New Jersey Webinars

6 on 6

Today, March 6, 2020 marks 6 years since I survived multiple brain injuries during a shunt revision on 3/6/14.  Today is my golden brain birthday - six years on the 6th day of March.  I had two shunt revision surgeries during 2014.  The second was when the rest of my shunt was finally repaired in May 2014.

After my brain injuries on 3/6/14.

Overall, I had a great brain birthday today. I had no chronic or shunt pain issues. The whole day and into the evening.

During the day today, I tried a Virtual Reality simulation at my local mall. I was on a swing somewhere in Asia. Very cool experience there were times when I got a little dizzy going up high into the air.

During the holidays in December 2019. 

6 Years surviving multiple brain injuries.

I also enjoyed some arcade games today. Finally, I made some new characters at the lego store and then returned home and enjoyed my cupcake. I didn't use a number candle this year, just because of last year's experience.

Blowing out my candle today made me hope to have more pain free days and of course, no more shunt revisions....I made a film about my brain injuries in 2014.

109

I had five pain free days earlier this week. Kind of a small miracle, which should always be celebrated. Then about two days ago, all the shunt drama returned.  Shunt valve pain with dizziness, distal catheter pain, nausea ,pain in my right eye and scalp sensitivity where my shunt is located.  Last night, my balance was really off, I had walking issues and I was bumping into things.

I've read in the news that soldiers in Iran suffered traumatic brain injuries as a result of an Iran Strike recently. The article can be reach here: 109 troops suffered brain injuries

I just hope these troops are getting the appropriate services they need to assist them in their recovery.

Symptoms of brain injury often never really ever go away completely.... A fellow survivor told me once, that recovery is a marathon and not a sprint.

In the meantime, I've re discovered word search puzzles, which I use to pass time when I'm not out saving the world through volunteering or drawing.

Grumpy with a side of tea

I've had shunt and forehead pain with a side nausea and right eye pain consistently for over a week now. The eye pain ( strabismus surgery eye ) happens at the same time as shunt and distal catheter pain. My shunt is probably adjusting itself or just being an unruly medical device or both. I've also had scalp sensitivity where my shunt is and am more aware of this when I comb my hair.

Either way, it's made me grumpy and I've been staying indoors when I don't have anywhere I need to be. Pain reliever's haven't been working.

I don't think the settings are have changed. Although, I wouldn't have anyway to check this because...

1. My neurologist doesn't know how to check my shunt's settings
2. The last neurosurgeon I saw in 2018, didn't know how to do this either. Because...

Apparently the shunt I was given isn't used anywhere nearby.

And this is just so helpful...

I can't go back to my ex neurosurgeon (who placed this shunt) because I fired him and he got animated into one of my films...

All I can do is wait for this to go away.

And there's always a little time for a tea...

7.7

No chronic pain today. Yesterday I was nervous because all day since the early morning hours  (around 5am) I had pain from my shunt, eye (where I had strabismus surgery in 2015) and nausea I suspect from the distal catheter in my stomach.  I hadn't experienced this type of intense discomfort in a while and it made me worried my shunt might begin failing again soon.

There have been a few days this week where I didn't get as many hours of sleep as I may have wanted due to pain issues.

To my surprise today upon waking up, there was no pain at all.  All of my symptoms from the day before and the last few months where gone.

I've been a little less productive due to chronic pain and lack of energy...

Since today is pain free,  it's time to be creative....

Happy music video  in the background....