Friday, March 29, 2019

3 weeks and some colored pencils

Since the week of March 11, my shunt has been misbehaving. My medical device is working, just acting like an unruly child. The changing temperatures outside are not helping. Additionally, my shunt adjusts each time I move my head and I can feel when the device is processing a lot of csf fluid. When this happens, there is pain on the shunt valve and through the distal catheter at the top of my head.  I've felt nausea some days from the catheter in my stomach.  Then there's the dizziness when I am walking sometimes...Yesterday the discomfort and pain was making me nervous because I'm always trying to pay attention to whether the shunt is failing or not. It's been five years and so far things are going well. There are times like these when I get uncomfortable and with good reason...

If it's not one thing like the shunt valve pain, then it's pain from what I suspect is still scar tissue from my injuries in 2014 on the left side of my head. This was gone for a while and then occasionally re-appears at random parts of the day. It's like my scalp is still searching for pieces of my shunt on the left side of my head. There are family issues going on too, which I'm not going to get into....totally not helping the situation.  

To distract myself from the head issues and everything else...My local library has a coloring therapy group for adults.  Just nice to sit with a few people, enjoy some tea and color various designs. This reminds me of a book I read called Zentangle, where you can create drawings which create a calming affect.  

I just hope my head and shunt pain diminishes soon. It's always a challenge dealing with a chronic illness like hydrocephalus and chronic pain, as any family or individual will tell you.  If anything, I feel like pulling out the short hair in my head out of frustration dealing with my shunt...Not knowing what it's going to do each day or hour.

In the meantime, I see my neurologist soon and perhaps this will lead to CT scans...

Update as of 3/20/19 - shunt valve pain all night with pain in my right eye. The many joys of living with hydrocephalus.....

Wednesday, March 6, 2019

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!