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). 

Let's Draw part I

 When it's raining outside and I have chronic pain, I draw rainbows because they make me feel better. 

Step 1: Draw curvy lines to create side of cloud.

Step 2: Close lines creating first cloud.

Step 3: Begin drawing 2nd cloud. 

Step 4; Continue drawing outline for 2nd cloud.

Step 5: Close lines. Now we have two clouds.

 

Step 6: Begin drawing rainbow lines

Step 7: Close rainbow lines and
darken pencil lines with pens,
markers or colored pencil.  

Step 8: Color in rainbow and clouds
using markers, colored pencils

I didn't include all the colors of the rainbow in this drawing. Sometimes I leave them out or I include all of the colors. This usually depends on the length between clouds which usually determines the number of lines in a rainbow. I also could've add more thin lines to give the rainbow more colors. Rainbow drawings can be colored in using a variety of media even cutting colored pieces of paper and using it to fill in the colors is a good idea too. 

brain walk '21 and turtles

 The Brain Injury walk I and many others usually participate in this year was cancelled because of the pandemic. Hopefully next year, we'll be able to walk in person for brain injury awareness. Last Saturday was the one day in a while where I didn't have any shunt or chronic pain from my injuries. My medical device has been reacting to the weather and whatever it feels like doing on that particular day. Monday,  10/12 I had nausea from the distal catheter part of my shunt into the evening at the same time as shunt and head pain. This made me nervous, angry and sad as I feared the shunt was getting obstructed again. Then the nausea went away by the following day. 

As of today, I have pressure in my forehead, dizziness, right eye pain and of course balance issues. Shunt malfuncioning symptoms include severe vomiting and headache, and the inability to walk and gait issues. For that reason, I was worried on Monday and relieved when things got better. With past shunt revisions, I didn't have any indication my shunt was obtructed. I would just wake up the next day and had have all the symptoms. Anyone who has a shunt or a family memeber with one will tell you how unpredictable this thing is. You just don't know when it will stop working.  

SNES Ninja Turtles IV
A fun escape during these uncertain times. 

When shunt madness makes me sad and angry, I escape through art, scrapbooking, movies like National Treasure or video games like the Super Nintendo classic, Turtles in Time.

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. 

socks

Yesterday, I almost fell trying to get dressed. My right crossed over the left leg, I caught myself when I landed halfway between the floor and the side of my bed.  Dizziness and walking, and turning issues have been the brain injury theme for me this week.  I’ve heard from other stroke/brain injury survivors the recovery process is a marathon, not a sprint.  Some parts of your life return to the way they were before your injury, other things do not.

Everything in your life is changed in some way.  Some things are just never the same again.

Because of the walking issues I was having yesterday, I decided to stay in one place and not walk as much. I ended up drawing for several hours yesterday. I haven’t done an hours long drawing session in a while because I’ve struggled with energy and concentration issues.

It was wonderful to escape for a little bit and forget for small amount of time the balance issues.

My cat, Stella, sometimes has walking issues when she is running. Yesterday, she was running into my room and she almost tripped over her two front legs.

Besides other stroke survivors, it seems my cat can relate as well.

I haven’t been able to volunteer for two months because of the pandemic. Some of the help needed requires lifting boxes, which I cannot do. This makes me sad, although I know I’ll be back saving the world through volunteering again eventually.

I’ve found music to help with both coping with the pandemic and my gait/pain issues. Happy songs include this classic from Oliver & Company ( NYC in the 1980s with Billy Joel) and Anastasia (1997)

Starlings

Today I have barometric pressure headaches. Earlier this week like on Tuesday thru Friday my shunt was adjusting itself and I had nausea, eye and pain on the shunt valve and distal catheter at the top of my head.

The starlings outside my window are really loud and are a bit of a distraction from the throbbing in my head.

I've also rediscovered various movie soundtracks which have helped lighten my mood.  You can never go wrong with Bill and Ted's Excellent Adventure or The Power Rangers Movie and Van Halen.

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.

Waves of communication

Grocery store robot moving in store

Last week and parts of this week, the pain medication I usually use for my chronic head, neck and abdominal pain didn't work.  I did my usual activities of volunteering last only to return home and try to forget the pain.

At times this didn't work very well, although I managed. I was grumpy, yet I managed.

I colored and sketched a plastic pumpkin. It was out of proportion.

Now it has googly eyes

This morning, I had pain issues again in my head and I took curamin for the pain. So far, it's been working the entire day.

Not sure what was happening over the last week.

Maybe it was the weather transition of Summer to Fall...

As I may have mentioned in a previous post about the Stop and Shop robot....

When I am in the grocery store, I run away from the robot which is suppose to alert the management about spills and maybe shoplifting?

It's too bad my programmable shunt valve ( and it's super advanced technology, sarcasm ) doesn't allow me to communicate with this robot electromagnetic waves or something.