Monday, September 7, 2020

m&ms and the brain

 As the shunt and chronic pain madness continues, I've rediscovered scrap booking and music to help escape. This song M&M commercial song from 2016 makes me smile.

Wednesday, September 2, 2020

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. 

Sunday, August 9, 2020

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.

Sunday, July 19, 2020

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. 

Sunday, June 14, 2020

distanced brain?

Thursday 6/11 and Friday 6/12 were pain free and then Saturday pressure returned in my forehead along with a chiari malformation headache. Haven't had one of those in a long time. I acquired the chiari malformation from the shunt revision surgery in 2009 when my shunt was moved and my brain almost herniated.  Instead, I have this malformation by my cerebellum which causes headaches.  I've been sleeping on my side to avoid putting pressure on the back of my head which would irritate the chiari malformation and cause headaches on both side of my scalp. Also pain when moving my head has also returned. No nausea from the distal catheter which is great. I started volunteering again from a distance with my local United Way. For their Spring Day of caring, they were asking people to donated crafts and drawings which would be given to home bound seniors who receive Meals on Wheels. An example of one of those drawings I created can be found here.

The cool thing is I've discovered another distraction from my chronic pain and illness.


Wednesday, May 27, 2020

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. 


Tuesday, May 19, 2020

copper and the eye

Less dizziness more shunt pain. My shunt has been adjusting itself the last three days. I know this because I've had the following symptoms: Throbbing shunt valve pain  along with nausea and pain from the distal catheter at the top of my brain and pain behind my right eye. I saw a commercial today for the copper belt.
Part of me wishes for second I could wrap this around my head to relieve my chronic pain. 

Yesterday, I watched a webinar from the Brain Injury Alliance of New Jersey. They were discussed mental wellness during the COVID 19 pandemic and how to cope. They talked about feelings of hopelessness, isolation, anxiety and panic attacks which people are experiencing now during the pandemic. They made comparisons to how these feelings are similar in many ways to recovering from brain injury. I hadn't realized this until the speaker started talking about how the act of putting on a mask and gloves to protect yourself when going out in public is similar to having to get prepped to go into the operating room.

I really enjoyed this webinar and I feel others will find it helpful as well. Their website posted the slides from the Covid19 in their webinar archives. These can be viewed below the webinar link.