3am on Wednesday

 

Millions of children, adults and families living with a cerebral shunt because of hydrocephalus spend a lot of time walking on egg shells because you never know when a shunt will become obstructed and stop working. Or in other cases become infected or fall apart inside the body.

Earlier this week, Wednesday morning around 3am, I found myself vomiting on my bedroom floor followed by sitting on the edge of my bed thinking about my symptoms and worried it might be my shunt failing.  

I realized later that it was an episode of what I now know was food poisoning.

During the early morning hours of August 18, I had to assess whether or not it was shunt failure.

I had vomiting….

I didn’t have any of the following:

Severe shunt pain,

My head wasn’t stuck in a downward position and my eyes weren’t sun setting… or turned downward

No gaited walk and my right eye wasn’t forced to close due to the buildup of cerebral spinal fluid inside my skull.

Around 4am, I sat on my bathroom floor waiting to vomit again. When that didn’t happen, I went back to bed.

It’s situations like this when I wish we had better technology to detect when a shunt will stop working.

I mean they have a device, the dexcom for people with diabetes that tells them what their glucose levels are. They can use their phone to read these levels.

We can do almost anything with our phones now.

Why can’t something be done that’s similar with these programmable shunt valves?! I mean I would think you’d be able to at least order takeout food or pick up on a few radio stations with this ‘advanced technology’ inside my brain.

They’ve used the same technology (with some improvements) since the invention of the shunt in 1956.

Not much has changed in terms of treatment.

At least I’m one of many who continue to be frustrated…

I know when my car needs an oil change every 3,000 miles.

I know when certain foods/beverages expire in my refrigerator or cabinet because they have expiration dates on them.

I don’t know when the programmable shunt valve in my brain will become obstructed and stop working.

CT scans and x Rays are used to determine whether shunts are working properly. Sometimes these things are accurate, other times, they are not.

My shunt in 2014 fell apart inside my body and was leaking out into my abdomen and all down the side of my neck internally.

Tests were done and nothing could be determined until I insisted on surgery because it was obvious to me something was wrong despite the technology saying otherwise.

We need to do better. We need Star Trek level technology NOW for individuals and families living with hydrocephalus this way we can all manage our symptoms better. 

The good news is my shunt behaved itself today and I was able to go out for a walk before the incoming hurricane….

And I heard this Journey song today which made me smile and brought back memories of when I was living in Mississippi while serving in AmeriCorps NCCC. We had a music contest and this song was one of the songs on our playlist.

 

 

 

 

Flamingo Saturdays

Millions of people who have cerebral shunts and/or brain injury or both have chronic pain symptoms often for life. Today Saturday, this morning at around 8:03am I had sharp pains from my shunt valve. What I usually use for pain relief where it be tumeric or advil, it works to reduce the pain sometimes and other times, it doesn't work like more recently. Occasional episodes of nerve pain on the top left side of my scalp. That hasn't happened for a while now like a few months. This week I've had the return of the following - dizziness and elevated csf pressure in my forehead and eye pain behind my right eye in addition to pain behind both eyes. While standing up on Thursday,  I had scissoring issues and my right leg crossed over my left leg...I caught myself from almost falling. I've also had episodes this week of TMJ, Tinnitus and vertigo and the return of the chiari malformation headache in the back of my head. What makes me smile during episodes of chronic pain and shunt issues is my new flamingo friend.

This furry friend is from Build A Bear workshop. The whimsical nature of this stuffed animal brings a smile to my face an joy to my heart especially when my shunt is unruly and I have other chronic pain issues.

 

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.   

shunt on wrist

I recently saved up enough to get three medical id bracelets. The one I had was a getting worn out and I felt getting additional ones would be a good investment. There are several websites where medical id bracelets can be purchased. As I’ve mentioned before, it’s important to have one if you have a medical device or allergy. In the event you are unconscious somewhere at least someone can look at your medical id and see important information. If I didn’t wear this bracelet, no one would know I have a shunt in my brain unless I told them.

When dealing with chronic pain from my injuries in 2014, I’ve tried a variety of medications for pain management. Something worked some didn’t. All are temporary relief until the cycle begins again. Recently, I as given gabapentin by my neurologist and that wasn’t really working as the side effects really bothered me. In the last two weeks, I tried a combination of CBD/CBG/Turmeric with curamin. 

 This seems to help reduce the pain from different parts of my head and shunt. It also lasts for most of the day until the evening. I can only take this once a day. Taking just the CBD/CBG/turmeric alone will not alleviate my pain. It works best when combined with curamin. In the evenings, this wears off and I’ll have to find something else to take in the evenings when needed. 

There are many ways of dealing with chronic pain and there are several medications out there that help people.

What I have noticed about taking this combination of pain relief is that it doesn’t get rid of the tinnitus in my ear or the phantom limb nerve issues I have. By phantom limb, I mean there is still nerve throbbing from the left side of my scalp where my shunt valve used to be. I still have episodes of dizziness and vertigo, wonderful side effects of having survived multiple brain injuries. 

Last night, chronic pain issues were making me sad so I played Nintendo to escape. Now I have the theme song from Hudson's Adventure Island on rotation inside my head. 

My story is just one of millions of people and families who have been impacted by brain injury.

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.