HAM 2022

I've been up since 4:30am with:

Pain and pressure in my forehead

Headache in the back of my head from the chiari malformation.

Pain on the shunt valve

Pain behind my eyes from injuries in 2014.

Pain on the top of my scalp on both the left and the right side. 

Some nausea in my stomach.

Medication reduced the pain a little, still have pain behind my eyes and in my head. We'll see how this improves throughout the day.

 I had three pain free days this week. 

 It was a letdown this morning because I made the effort to sleep on my left side to avoid head pain issues. Sleeping on the right side is risky as it can irritate the fragments of my old shunt that stuck inside my neck from my injuries in 2014.

Also the right side is where my shunt is and if I turn my head the wrong way on the right side, causes issues with the distal catheter. 

September is hydrocephalus awareness month. 

I'm just one of many people young and old who has a shunt in their brain and has to deal with all the drama that comes with it.

I made a film about my brain injuries in 2014. It can be viewed here. I am not famous, just a starving artist with a chronic illness.

Because of the pain behind my eyes no Nintendo therapy today. 

Maybe in the late afternoon, I'll attempt to color.  

It took four hours for my head pain to go away. By 11am I still had pain behind my right ear and some shunt pain.

 

 

 

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.

buttons

Pain medication worked yesterday for my shunt pain. Today, I've been dizzy and I've had some double vision issues and pain on the left side of my scalp. 

The highlight of my day today was seeing a butterfly outside and getting to a new level on the Felix the cat video game for Nintendo. 

Since I have no plans today and I don't feel like going anywhere because of chronic pain issues, looks like it will be a day of reading and maybe a possible Batman The Animated Series marathon...

9/5/21 - woke up this morning with chiari malformation headache in the back of my head, forehead pain and distal catheter pain at the top of my head and some pain behind my eyes. Pain medication didn't alleviate all of discomfort....Looks like it's back to reading and watching animated tv shows...

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

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.

 

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. 

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. 

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.  

puzzles

Almost tipped over backwards this week due to balance issues. The last two days I've headaches in the back of my head (from chiari malformation). I also had a random Tinnitus episode in my right ear which hasn't happened in months. The curamin I've occasionally be taking for pain hasn't worked much in the last 48 hours. 

At least the curamin helped when I used it earlier this month. 

The barometric pressure outside is not helping. 

At least there's music, art, movies, puzzles, video games and books to distract from the chronic pain chaos.

 

Titinus and the eye

This month, tinnitus  has returned with occasional episodes of vertigo with a side of walking issues.

I haven't heard noises behind my right eye (strabismus surgery eye) for about a month. My shunt for the most part is behaving itself the last few days. A few weeks ago I felt a sharp pain run down the side of my neck along the distal catheter. I was worried the shunt might be getting obstructed again as I had a similar feeling in 2011 and the day after my shunt was obstructed and I was in the Emergency Room.  

I do talk to my shunt sometimes, thinking  I can convince it to behave especially when it's causing pain like I experienced a few weeks ago.  Eventually, the pain went away and I was relieved that my fears of having surgery again did not become a reality. 

While I am not in the operating room now, I do think about the children and adults who are having shunt revision surgery during this pandemic. 

Heavy metal and snow

Pain behind my eyes and in my forehead all day today, I took something for it and nothing has improved.  Sometimes the curamin vitamins I take work. Sometimes they don’t. Sometimes ibupropfen works, sometimes it doesn’t. Yesterday was better. My shunt beeped once while I was driving last week. Most likely it was adjusting or reprogramming itself. I did think for a second that it was communicating with a satellite since it is magnetic.

If only I could order take out food or pick up on radio stations with the advanced technology inside my brain.

Many people benefit from taking prescribed medications, I’m not one of them. In the past, I’ve used prescribed medication for pain management. Because of the side effects, I had to stop.

I was given anti depressant medication once for pain management and all it gave me was severe  mood swings. Other medications like gapapentin made my knees, fingers go numb.

Exercise is a good distraction from my pain issues as is making new art and seeing black santa décor at my local mall.

Seeing black santa fills my heart with joy, as does heavy metal holiday music.  

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.

balance and a few roses

Me (Veronica) outside at a local rose garden. 

My walking and balance issues are random and they've been happening more frequently. I fell backwards yesterday which is different from my falling routine which is almost always right leg crossing over left leg. I told my neurologist about this and she gave me a referral over the summer for physical therapist in my area.

I have to delay Physical Therapy for now.....

                                      Because of the pandemic, masks are required in public places and it will be difficult for me to wear a mask for an hour long physical therapy session. 

A flower in the garden 

In the meantime, I went for a walk at a new rose garden discovered by a friend. I had shunt and scalp pain issues all day.

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. 

in purple

 Last week, I got a new pair of glasses in purple. All week, my right eye ( surgery eye ) has been rebelling and drifting occasionally to the right. Or other times, it will not align with the other eye when I move my head. The glasses are a little bigger than my previous pair. 

Chronic pain has been bad the last few days. Today has been a lot better and I saw a yellow butterfly this morning, which made me smile.

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.