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...

10

 This yea  marks 10 years since I started this blog and began documenting my cerebral shunt's daily activities. At the time, I wasn't aware my shunt was on the wrong side of my brain.  I would figure this out on my own while in the neurosurgeon's office in 2014. 

More on that later...

My shunt has been behaving itself today. Last week, I had shunt valve and head pain in different parts of my head.  Upon taking curamin, the pain on my scalp went away after a few hours. The shunt pain still remained. 

No pain behind my eyes over the weekend, which meant I had a little time for the Nintendo game, Snow Bros. Appropriate for the cold weather and the music can get stuck in your head.

side

For about a week now, I've experienced the following:

Pain from the chiari malformation by my cerebellum

Pain on the top of my head on the left and right side.

Pain in the distal catheter and down the side of my neck. I suspect over the last 8 years this is because of the brain damage I have from my shunt being on the wrong side of my brain for 5 years. I now have a condition called slit ventricle syndrome. 

Dizziness and right leg crossing over the left leg while walking. If I'm not aware of this as it happens, I will fall. When I was in rehab in 2014 after my injuries, my physical therapist had called it scissoring because I had multiple injuries on my brain which caused my legs to cross over each other like scissors. 

Nausea from the distal catheter in my stomach which meant that my shunt was readjusting itself.

I've had pain behind both of my eyes.

8/2 - Ringing in my ears from the left to the right side

Today 8/3 - TMJ issues in my jaw - it locked randomly while I was talking - There are exercises I do when this happens. It doesn't take away the TMJ completely just makes it more tolerable. Today some pain behind my right ear from the catheter. 

Many things such as the weather, satellites, the moon, barometric pressure, thunderstorms contribute to my shunt issues. 

At least I know that it's working and that I'm not alone in my chronic pain issues. 

What I've had in the last week makes me nervous sometimes as anyone with a shunt will tell you - There's no way of knowing when it's going to stop working. 

And we know medical technology is not that reliable in detecting these things.

Unless you're on Star Trek where they'd be able to tell you within 5 minutes what was going on and when the expiration date was. 

The pain I've had behind my right ear is from both the distal catheter and from the fragments of my shunt that fell apart inside my body in 2014 that are still in the side of my neck and in my stomach. 

When the pain is bad like it's been in the past and this week, it makes me sad and angry. 

And when this happens, I engage in health coping mechanisms like reading, coloring, and the occasional Nintendo therapy. 

No Nintendo therapy recently because of chronic pain issues. 

Today 8/4 - I had head and shunt pain issues for a few hours. By the afternoon, I was feeling better. I hope this continues through the weekend....

Pain issues continues off and on throughout the weekend on 8/6 thru 8/8. It's time to listen the theme song from Darkwing Duck.

friends, movies and books

This week in the world of chronic pain with my cerebral shunt:

TMJ issues in my jaw.

Pain and pressure behind both of my eyes.

Dizziness

Pain on the shunt valve and distal catheter in my head and neck.

Fell up the stairs after loosing balance because legs just got confused again. 

Knocking in my head from the left ear to the right ear. 

Chronic pain issues from my injuries and medical device sometimes makes me sad and angry. So as a distraction today, I turned to movies like Iron Man and reading.  I got to enjoy the film with some furry friends:

 

In this photo, the dragon is from Plush in a Rush, he was a souvenir from an escape adventure room like 5 Wits. The sock monkey was made from a sock monkey kit, the flamingo is from Build a Bear Workshop and Iron Man is from Ty Store.

Today, (7/16/22) I have pain behind both eyes, dizziness and walking issues, a headache in the back of my head from the chiari malformation. Pain on the top of my head on both the left and right side. Occasionally today, I've had double vision where my right eye (surgery eye) drifts and then snaps back into place. It's not that I can't take medication for this, I can. I try to me mindful of how much I take as some things like advil can harm the liver. 

I like having a liver.

When my neurologist has prescribed medication for me in the past, I have side effects like numbness in my legs that I didn't like. I've taken natural pain reliever with no weird side effects, there are days when they work and other times when they don't. 

The changes in the weather and barometric pressure effect my shunt and chronic pain from my injuries. I know I am not alone when I talk about this. Many people both children and adults who have cerebral shunts and/or other medical conditions also experience discomfort when the weather changes and anything else that's in the atmosphere. 

I'm convinced that satellites also impact medical devices and chronic pain. 

I just wish there was more to help us. On bad pain days, I get nervous and worry about when my shunt will need another revision. I hope to never have to experience that again. As I've mentioned in previous posts, I wish we had a way to we could predict when our shunts needed revisions. I mean people with diabetes can monitor their glucose levels with dexcom devices. People living with hydrocephalus can't do this with their shunts. Will the madness ever change?

More than 3 days and the rain

The rain and the barometric pressure caused my chronic pain issues.  Last week, there were three days of the following symptoms:

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

Pain behind my eyes.

Dizziness and some double vision when turning my head to the right.

Pain on the shunt valve. 

I sometimes take pain medication to better tolerate and or reduce the pain I feel. If I don't have to go anywhere and I feel this way, I don't go out. Last week, I had places I needed to be, and I didn't have the option to stay home.  I took medication during the day, and it didn't relieve my symptoms. 

I didn't feel better until a few days later. Today is a huge improvement from how I was feeling during the weekend and part of last week. 

I do find it comforting to talk to others who also experience pain from the weather and pressure changes. People who have medical devices, medical conditions chronic migraines experience chronic pain from the weather and who knows what else is in the atmosphere, like the phases of the moon and satellites.  It's just nice to know I can talk to others who can relate. 

When I don't have to be anywhere, and I have chronic pain issues there's always time for at least an hour of Nintendo or drawing. 

No Nintendo therapy today (6/30) due to pain behind my eyes and pain on the top of my head and down the side of my neck from the distal catheter.