Sun, moon and a garden

 Before April's eclipse, I was concerned my shunt would have the same reaction it did during the eclipse in 2017.  I was pleasantly surprised this year. I had a some valve pain and shunt adjustment issues (nausea and pain from the catheter) the day before and a little during the morning of the eclipse. It wasn't as bad as the experience I had in 2017 where I felt like my head and shunt were being squished by gravity. 

Seeing the eclipse was exciting and a little bittersweet, as it made me think about my late cat, Stella (2000-2023). We  watched the eclipse in 2017 together. The fun part of the 2024 eclipse, I had a new friend ( left ) who I believe was trying to watching something out the window that day.

 Later during the week, I went with a friend to a flower garden (below right). Being outside was great even though it was very windy out that day. The wind bothered my shunt and I was still able to enjoy being outdoors.

For some reason today, songs from The Hunchback of Notre Dame (1996) are in my head...

 

10 years later, part II

This week, I had pain behind both eyes, nausea and pain along the distal catheter in my head and down my neck. My shunt is working, just making adjustments and my past injuries causing chronic pain... I had a good cry about this one afternoon. I don't speak for everyone who has an  unruly medical device and/or chronic pain - Sometimes you just have bad days and you cry a lot. That was me for one day last week.

Then I played Star Fox (1993) on Super Nintendo and it made me smile. I felt accomplished when I beat one of the levels. The end title music is wonderful.

 In 2009, after my shunt was moved to the left side of brain I changed doctors and saw another neurosurgeon who I thought would listen to me. We'll call him Dr. Potato ( Not to be confused with Dr. Potato head who is smarter than this physician)  In 2011, I had a shunt revision and Dr. Potato moved my shunt valve to the right side of my brain, leaving the distal catheter on the left side. 

In 2013, my shunt began to fall apart inside my body ( unknown to me ) except around November 2013, I started to not have an appetite due tot he distal catheter being broken in my stomach. I also started to have vibrations inside my head which would indicate part of the shunt is broken ( a medical emergency by the way ).

Again, this went ignored by Dr. Potato. Until I insisted on doing a shunt revision where my shunt stopped working during surgery and I had two strokes, a brain hemorrhage and and Traumatic Brain Injury. 

Like anyone who has experienced a traumatic event and/or living with a chronic illness... I still experience the following:

Survivor's Guilt

Chronic Pain 

Brain Damage

Like every brain anniversary, I enjoy something sweet. This year, I decided to be adventurous and had a slice of cheesecake.  I also treated myself to a new friend ( How I feel when I experience chronic pain). 

Additionally, I treated myself to a new game, which I've heard is a good memory game...

I made a film about my injuries. Again, I am just one of many people who has a cerebral shunt, chronic illness and has experienced a traumatic event.  My film can be viewed here.

Mermaids and the some

No chronic pain issues this week. Today is mild. 

In October I experience a variety of the following:

A day when head and shunt pain didn't go away for three hours, without medication. I had the usual pain behind both eyes.  I try not to take pain reliever unless I really need to. 

Taking regular over the counter pain reliever usually reduces the pain I feel in my head and neck. It doesn't always eliminate it completely. 

Individuals and families with an unruly medical device and chronic illness have a variety of symptoms. I'm just one of many people.  

Today, I enjoyed returning to Nintendo Therapy which included Super Mario World (SNES) and The Little Mermaid (NES)  I was able to focus for like one hour despite having some head pain. 

Let's not forget other coping mechanisms like Music by Joe Hisaishi and reading...

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). 

11:30PM

Sometimes around 11:30pm last night, I was awakened by a severe thunderstorm outside. I also had pain from:

1. The chiari malformation in the back of my head.

2. Nausea from distal cathether in stomach.

3.  Pain behind both eyes 

4. Pain from the shunt valve and distal catheter at the top of my head. 

It's been like four hours and the pain has been reduced, still lingering in the background. I'm doing this new thing where I don't take pain medication unless I really really need to.  

Not sure if I'll do nintendo therapy today, as I have pain behind my eyes.  It may be a reading and listening to movie soundtracks type of day.  Music from films like Suzume and Spider Man are in my head today.

Two weeks and water from the sky

 Since it's been raining in my area. I know I'm not the only one who experiences chronic pain issues with the changes in barometric pressure and the weather.

This week:

Pain behind right eye with needle like pain in both eyes. The feeling of having a needle being pushed inside your eye all the way into the my eye socket. 

Pain on the shunt valve with nausea from distal catheter.

Headache pain from the Chiari malformation  in the back of my head.   

Some walking issues with my left leg.

As a distraction from the chronic pain issues this week, I enjoyed reading and  of course, Zelda.

Super Super

 The last few days have been pain free. 

Then there was today.

Sometime this afternoon I began feeling the following:

Headache pain the back of my head (from Chiari Malformation)

Nausea from my shunt adjusting itself....

Pressure and pain the forehead

Pain behind both of my eyes.

Pain on both sides of my head. 

Pain on the shunt valve and along the distal catheter down the back of my head and into some of my neck.

I took two different pain medications about a hour apart from each other starting around 12pm and then again at 2pm. 

Three hours later, I still have head pain. 

I attempted Nintendo therapy with Super Mario World (SNES) and was not very successful. Let's just say lots of game overs....I felt compelled to play of course after seeing the film recently.

Maybe it's because the weather is warmer now, satellites, drones, the moon.... whatever else is in the atmosphere that effects these programmable shunt valves many people ( of various ages ) have to deal with....

9

 This week marks nine years brain surgery free and nine years after surviving multiple brain injuries during shunt revision surgery in 2014. I needed two surgeries to fix my shunt that year. It doesn't feel like it's been that long.  I feel the shunt all the time now because of the injuries I had to my brain.  No two shunts are the same and everyone ( both children and adults ) have different experiences. 

Every year I have a cupcake or a pastry and put a candle in it to celebrate being surgery free and surviving all of this nonsense. Photo is below. The only year I didn't do this was in 2015 ( the first anniversary), as I was waiting to have surgery to repair my eyesight.  

It's windy outside today and my shunt is behaving itself, for now. 

I've been into music from some movie soundtracks such as:  Iron Eagle (1986) Hercules (1997) This song was playing in the background while I was at the store earlier this week Daft Punk. Made me think of this whole brain birthday celebration I do like every year. Not in reference to having more surgery, obviously.

 I made a film about my brain injuries to help spread awareness about brain injury and hydrocephalus it can viewed here. I'm a starving artist with a chronic illness. One of many out there living with hydrocephalus. 

the weekend

Many people both adults and children who live with a chronic illness, unruly medical device and/or chronic pain have various symptoms they deal with daily. I'm just one of many. 

Sounds are bothering me this weekend. I had to put on noise canceling headphones because the sound of cabinet doors closing and radio was hurting my right ear. Since my injuries in 2014, I have some tone issues with that ear as it was bleeding after my injuries.  

I took pain reliever in the morning, it reduced my symptoms. They were still lingering even after taking medication. 

 The rest of the day I still had:

Pain behind both eyes.

Noises from behind my right eye. 

Nausea

Pain from the distal catheter in my head and pain from moving my head from side to side.

Pressure in my forehead.

 And my left leg crossed over my right leg while I was in the kitchen. I was able to catch myself and avoided landing on the kitchen floor. 

Music helped me yesterday and a today to distract me..I'm still waiting for that Powerline Album...

Themes

Last month in January, I had the following:

Pain behind my right eye (where I had strabismus surgery) I was told the pain I feel behind one eye or both is not from the surgery I had in 2015. Rather, it's from the internal injuries I had. I also had pain in front of my eye. Felt like a needle was being pushed into it. This is the same pain I've experienced at the top of my head sometimes.

My shunt making self adjustments with a side of nausea.  This is better than when it was beeping in 2015 and 2016...I haven't heard any sounds from my shunt since then.

Scissoring issue with my right leg crossing over my left. I didn't fall - I was able to catch myself in time. This is random, as I've mentioned before and happened this morning when I went to turn on a lamp. 

Hearing sounds from behind my right eye. I was told this wasn't from my surgery, it's from in the injuries I had. 

Right eye drifting issues.

Sometimes pain reliever it helps, other times it doesn't. Depends on where the pain is coming from. 

One thing which makes me smile  with all this chronic pain nonsense is the soundtrack to Ducktales which encompasses music from both the television series and the nes game Ducktales (1990).

Let's not forget how awesome the music is from Chrono Trigger (1995) 

Nintendo therapy with Starfox (1993) was unsuccessful last week - I was having drifting eye and eye focusing issues. You have the point of view of the pilot in this game and there are times when objects are flying towards you quickly plus you have to save your teammates while being attacked by enemies. I was having visual sensory overload - Doesn't usually happen for me with Starfox and I blame atmospheric pressure and brain damage.

I did make a second attempt the following week and only had one game over and was successful in finishing the game on level 1.  Of course, this second attempt made me think of a song by Aaliyah.

I'm just one of many people with a shunt, I have my own coping mechanisms.  Many children, adults and their families live with chronic pain and chronic illness. Everyone has their own way of coping with this and dealing with pain management.