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.

Saturday, May 16, 2020


Pain issues have been minimal the last week, which is a nice change for once. Recently, I had a video appointment with my neurologist and she suggested I try and put pain cream on parts of my head and  when I feel discomfort from my shunt or elevated csf pressure in my forehead. I'll try this and we'll see what happens.

Less pain, more dizziness for me this last week.  I experience this when move my head from side to side or when I am sitting, standing and everything else. Now that it's getting warmer and more humid outside my shunt ( which is magnetic) responds to the warmer temperatures. If I don't wear a hat outside when it's very hot and humid, it can cause different issues with my medical device like fainting and disorientation.

I can't volunteer because of the pandemic. Like everyone else, I'm home unless I make a trip for something essential like to the grocery store. My local Stop and Shop has a robot,  I think it's name is Bob or something... The robot has made me paranoid because of my shunt. I don't feel magnetic waves off of the robot like I do when I walk by a pest repeller on a wall.  I avoid the grocery store robot as much as possible. At one point, I thought it was following me in the produce section....

The pandemic has made me (along with millions of other people) anxious about going anywhere, outside. I can only wear a mask to cover my nose and mouth for short amount of time.

My local brain injury association has free webinars to help people cope with this pandemic.

Another great way to help all of us who need it now:

Sunday, April 26, 2020


Yesterday, I almost fell trying to get dressed. My right crossed over the left leg, I caught myself when I landed halfway between the floor and the side of my bed.  Dizziness and walking, and turning issues have been the brain injury theme for me this week.  I’ve heard from other stroke/brain injury survivors the recovery process is a marathon, not a sprint.  Some parts of your life return to the way they were before your injury, other things do not.

Everything in your life is changed in some way.  Some things are just never the same again.
Because of the walking issues I was having yesterday, I decided to stay in one place and not walk as much. I ended up drawing for several hours yesterday. I haven’t done an hours long drawing session in a while because I’ve struggled with energy and concentration issues.

It was wonderful to escape for a little bit and forget for small amount of time the balance issues.
My cat, Stella, sometimes has walking issues when she is running. Yesterday, she was running into my room and she almost tripped over her two front legs.

Besides other stroke survivors, it seems my cat can relate as well.

I haven’t been able to volunteer for two months because of the pandemic. Some of the help needed requires lifting boxes, which I cannot do. This makes me sad, although I know I’ll be back saving the world through volunteering again eventually.

I’ve found music to help with both coping with the pandemic and my gait/pain issues. Happy songs include this classic from Oliver & Company ( NYC in the 1980s with Billy Joel) and Anastasia (1997)

Friday, April 24, 2020

dizzy with a side of music

I learned earlier this week, I have a relative who had a stroke; he is now home recovering and doing better. I’ve been having walking issues today and almost fell twice. I’ve had right leg crossing in front of the left leg randomly, which happens sometimes and not too often. Then today I experienced something, which never happens, my left leg crossed in front of my right leg when I was walking.

The left leg almost never does this, so it was especially odd. Shunt and scalp pain on the left side of my scalp once this morning around 2am. Followed by some scalp pain in the top right corner of my scalp this afternoon at 1:37pm.

The usual shunt and scalp pain issues could be from a variety of things such as barometric pressure, phases of the moon, and rain/snow…

These stay at home orders during the pandemic remind me of when I came home from rehab after my brain injuries in April 2014. I couldn't drive for a year and 12 days because of the damage to my right eye. The only difference now is I no longer have double vision and can drive.

During these uncertain times this Altice One commercial brings me joy: