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

outside

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

socks


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: https://www.youtube.com/watch?v=a1lVkezaQ10

Sunday, April 5, 2020

Starlings

Today I have barometric pressure headaches. Earlier this week like on Tuesday thru Friday my shunt was adjusting itself and I had nausea, eye and pain on the shunt valve and distal catheter at the top of my head.

The starlings outside my window are really loud and are a bit of a distraction from the throbbing in my head.

I've also rediscovered various movie soundtracks which have helped lighten my mood.  You can never go wrong with Bill and Ted's Excellent Adventure or The Power Rangers Movie and Van Halen.

Friday, March 6, 2020

6 on 6

Today, March 6, 2020 marks 6 years since I survived multiple brain injuries during a shunt revision on 3/6/14.  Today is my golden brain birthday - six years on the 6th day of March.  I had two shunt revision surgeries during 2014.  The second was when the rest of my shunt was finally repaired in May 2014.
After my brain injuries on 3/6/14.

Overall, I had a great brain birthday today. I had no chronic or shunt pain issues. The whole day and into the evening.

During the day today, I tried a Virtual Reality simulation at my local mall. I was on a swing somewhere in Asia. Very cool experience there were times when I got a little dizzy going up high into the air.

During the holidays in December 2019. 
6 Years surviving multiple brain injuries.
I also enjoyed some arcade games today. Finally, I made some new characters at the lego store and then returned home and enjoyed my cupcake. I didn't use a number candle this year, just because of last year's experience.

Blowing out my candle today made me hope to have more pain free days and of course, no more shunt revisions....I made a film about my brain injuries in 2014.














Friday, February 14, 2020

109

I had five pain free days earlier this week. Kind of a small miracle, which should always be celebrated. Then about two days ago, all the shunt drama returned.  Shunt valve pain with dizziness, distal catheter pain, nausea ,pain in my right eye and scalp sensitivity where my shunt is located.  Last night, my balance was really off, I had walking issues and I was bumping into things.

I've read in the news that soldiers in Iran suffered traumatic brain injuries as a result of an Iran Strike recently. The article can be reach here: 109 troops suffered brain injuries

I just hope these troops are getting the appropriate services they need to assist them in their recovery.

Symptoms of brain injury often never really ever go away completely.... A fellow survivor told me once, that recovery is a marathon and not a sprint.

In the meantime, I've re discovered word search puzzles, which I use to pass time when I'm not out saving the world through volunteering or drawing.

Sunday, January 26, 2020

Grumpy with a side of tea

I've had shunt and forehead pain with a side nausea and right eye pain consistently for over a week now. The eye pain ( strabismus surgery eye ) happens at the same time as shunt and distal catheter pain. My shunt is probably adjusting itself or just being an unruly medical device or both. I've also had scalp sensitivity where my shunt is and am more aware of this when I comb my hair.

Either way, it's made me grumpy and I've been staying indoors when I don't have anywhere I need to be. Pain reliever's haven't been working.

I don't think the settings are have changed. Although, I wouldn't have anyway to check this because...

1. My neurologist doesn't know how to check my shunt's settings
2. The last neurosurgeon I saw in 2018, didn't know how to do this either. Because...

Apparently the shunt I was given isn't used anywhere nearby.

And this is just so helpful...

I can't go back to my ex neurosurgeon (who placed this shunt) because I fired him and he got animated into one of my films...

All I can do is wait for this to go away.

And there's always a little time for a tea...

Sunday, January 5, 2020

3

I had three days of pain free no drama from my shunt this week. Yesterday, barometric pressure headaches returned.  Apparently, there is snow in the atmosphere expected later today.  I've had episodes of dizziness since yesterday. The shunt is adjusting itself again and I feel distal catheter pain in my abdomen yesterday and today. Saturday morning around 11am was when I felt light throbbing from my shunt valve at the top of my head. This happened while I was driving yesterday, which almost never happens. Today, besides the pressure in my forehead, there is some pain in the back of my head from the chiari malformation, I acquired during the shunt revision in 2009.








Thursday, January 2, 2020

2010s

I've been pain free for two whole days this week. Which means...
X Ray image of my shunt 2014 to present.

No elevated csf pressure in my forehead.

No pain from the shunt valve and/or distal catheter in my abdomen and neck.

No nausea associated with the shunt adjusting itself.

No right eye pain (strabismus surgery eye)

No dizziness when moving my head or sensitive scalp.

I also haven't heard my shunt beep since 2016.

So for now, I don't feel my shunt at all. Something I haven't experienced in a while. I took this for granted prior to my shunt being moved in 2009.

Before then, I only knew the shunt was in my brain when it stopped working....

In the 2000s I had one revision in 2009.

In the 2010s I had shunt revision surgery in 2011 and two in 2014.

Having chronic pain makes me grumpy/irritable/depressed and there have been times when I wished I could remove my shunt myself. Obviously, this can't be done...My nervous system cannot survive without one...

It's a great feeling to not be in pain and not want to wage war against my medical device.

Here's hoping for less pain and no shunt revisions in the next decade.