Tag Archives: chronic illness

Cinco Años

Today it’s been five years  ( cinco años ) since I survived multiple brain injuries during a shunt revision surgery. On March 19 of this month, it will be 4 years since my vision was repaired after my injuries.  Only two meals for today since I had this little treat. The cupcake was tasty, the chocolate number five, was just okay. I went to a brain injury support group last night.

Brain birthday cupcake
Shunt revision scars on my scalp indicating my shunt
had been moved in 2014.  Sadly, I’ve seen similar images
from others.
Since my injuries in 2014, I try to inform others about how shunts can sometimes be put in the wrong way inside the brain. I think it’s something that happens more often than we’d like to think. If I hadn’t advocated for myself and insisted my (now fired) neurosurgeon fix my shunt, I wouldn’t be here.  Covert racism has a lot to do with how some doctors dismissed my complaints.

Photo of myself after multiple brain injuries in 2014.
I had some shunt and scalp pain this morning while volunteering at United Way today. Later this week, I’ll be helping Meals on Wheels. 
Left side scalp pain still shows up sometimes. I think it’s where part my shunt used to be or I had one of my three bleeds in that area. 
Photo of myself at brain injury walk in 2018.
The scalp pain is a significant amount less than it was when I returned home from rehab in 2014. Most of the pain I get is as mentioned before, is from my moody and vindictive programmable shunt valve. Grateful to have survived and that the multiple bleeds I had didn’t result in more shunts being put in my brain. 
Dealing with one is enough.
I made a film about my injuries and recovery as a coping mechanism and to help educate as many people as possible about hydrocephalus and brain injury.  
Therapy helped me a lot to deal with the trauma of my experience. I laugh to myself when I think about the moment I was laying in the hospital (see above) with a bandage covering my head, crossed eyes and partially paralyzed from the waist down. I was angry and sad and at the same time realizing, I had to document my experience. 
Artists like myself, are always looking for inspiration for our work….
Here’s to several more years brain surgery free!  

Grumpy with a side of cereal at 2:14am

Barometric pressure headaches have returned…..It’s been a while since I’ve gone on an angry rant about my shunt and chronic pain. This week just about everyday, I’ve had continuous pain from the shunt valve, chiari malformation, distal catheter in my stomach, eye pain and scalp sensitivity near my shunt.  I feel some of this discomfort is from elevated csf pressure in my forehead. Perhaps my shunt is over working again. The good news is, I know it’s not obstructed. At least I don’t hear the device making noises anymore…

Yesterday, I chose to watch Netflix. I figured maybe watching this for a few hours will take my attention away from my pain issues.


I couldn’t focus on drawing, games or reading yesterday because of pain issues.

I was up this morning around 2am for super early breakfast and hoping eating would make the pain less.

This didn’t work very well. I went back to sleep after eating only to wake up again later in the morning with the same issues from the last few days.

The crazy temperature changes and super moon earlier this week haven’t been helping….

I saw a little bit of the super moon on Tuesday evening while on my way to a support group meeting. I didn’t know it was a super moon until I saw the news report later that evening. When I saw the rather large yellow moon around 5:45pm and thought it was really cool, not knowing it was a super moon. I have my calendar marked for the next one.