Dears, I hate you Part IV

For three days this week, I felt like an ice pick had been stabbed into my right eye and top of my shunt valve. This all started on Wednesday afternoon after I saw my neurologist for a yearly appointment. I still have balance issues and some weakness on my right side.  I had one good day this week, which was yesterday....Today is just 'ok' better than earlier this week.

4th

On March 6, 2018 I celebrated my 4th anniversary of my brain injuries.  I didn't celebrate the first

Brain birthday ice cream with candles.

anniversary in 2015, because I still had double vision at the time.  Each year since then, I treat myself to a movie or dinner to celebrate surviving the experience. I'm not saying almost dying in the hospital after a shunt revision surgery wasn't horrific, it was. I just try to reframe the memory, while not forgetting how upsetting it was for me. Anyone who survived a brain injury will probably tell you, it's not an easy things to recover from. Recovery is different for everyone and can years.  It's been four years and I still have effects from what happened to me such as: balance, pain and walking issues to name a few. 

Dear shunt: I hate you, part III

Trip to 5 Wits

It's going to snow at some point during this week, I know this because I was checked the weather report. And as usual, my shunt is aware of the change in the climate outside and therefore cause pain and dizziness. Last month, I went with a friend to 5 Wits at my local shopping mall. Despite my shunt being unruly, I still managed to have a great time. This also allowed me to get out of the house.

Today there is right eye pain along with some nausea from the shunt.  I still went out to volunteer with my local Meals on Wheels and when I was done, I returned home to put my head down.

Oreos on a stick during wedding reception.

I noticed in some social situations, where there are gatherings of many people I get sensory overload. I didn't have this issue before my brain injuries. Sometimes I have a challenge with expressing myself like describing emotions.  This happens with speech and in writing. It takes me a while to hand write a note or letter to someone. I can feel the the information get stuck inside my brain and it struggles to get onto paper or in words.

It's frustrating.

Especially when in the moment, I may not realize why there's confusion inside my head only to realize after the fact what happened. I went to a friend's wedding this weekend was so happy to be there and like 5 Wits I had a great time. I still was able to recognize when I needed to be alone sometimes for cognitive reasons related to brain injury. Sometimes after a brain injury, the brain isn't able to filter all the information it's receiving at the same time. We don't realize sometimes how much processing we're doing on a daily basis.

I'm still trying to get used to this new brain/body. The learning continues...

Brain on Books

I had two okay shunt days so far this week. Today I feel dizzy, I suspect because we're getting a foot foot of snow tomorrow.  Putting my head down will alleviate some of the discomfort.

I finished a book yesterday called The Danger Within Us: America's Untested, Unregulated Medical Device Industry by Jeanne Lenzer. The book was recommended by someone on Twitter and I was able to get a copy from my library.  The Danger Within Us discusses the history of the American Medical System, problems which arise and are still continuing for patients and doctors. My jaw was on the floor several times while reading this book. Just in the introduction alone, I was stunned at what I was reading. 

I couldn't believe the FDA ( food and Drug Administration )  can approve medical devices ( cerebral shunts, stents and others ) without verifying whether these devices are actually safe to use on people or not.  As long as they work ( and $$ ) then that's what matters.  I knew this issue existed in the use of drugs and pharmaceutical companies. I've been given medications after my brain injuries in 2014 which were supposed to be for pain management. Several times some of the drugs I was given either gave me extremely depressed/suicidal or I had psychotic episodes. I also felt my shunt was reacting to the medications I was given.  The Danger Within Us also talked about medical devices which can be controlled wireless. What's stopping someone from hacking into a pacemaker from another room and disabling the device? Things I didn't think about until reading this book. 

It's only inspired me to write to my local legislative officials perhaps policies can be changed regarding medical devices and the care we receive upon having them inserted into our bodies. 

Dear Shunt, I hate you, Part II

Waking up this morning was a good thing. My shunt besides reacting to the weather outside, also adjusts to whenever my head moves.  When moving up and down whether its from the floor to standing up or walking up and down a flight of stairs, I can feel the shunt adjusting pressure inside my head. This is not fun and results in me feeling more grumpy and irritable. I almost collapsed yesterday when brought groceries up the stairs. Upon entering my kitchen, I felt dizzy and pressure inside my head.  I held onto a wall to keep myself steady. This was around 7pm last night. I went to bed after and at 1am, as usual, there was pain on the shunt valve.  I do find putting my head down to be helpful even if momentarily.

There have been days when I've felt nausea in my stomach, most likely from the programmable shunt. These artificial devices although helpful, sometimes aren't compatible with our bodies. Not saying my shunt is not working, it is, which I am grateful. I'm convinced because it is a magnet and temperamental, that my body still (four years later) is adjusting to the device. Surgeons don't know how your body is going to react to an artificial device until it's been implanted.  Some people respond well, others don't.

I've found music and exercise like Pilate's has helped with some of my pain management. Listening to music helps me focus on something other than the pain with a combination of exercise to focus my attention on something else.

Changes

Plant in office waiting room.

I found this week that my neurosurgeon will be going to another hospital. This also means I'll be assigned to another neurosurgeon. The neurosurgeon I had from 2015 to 2017, I had only seen him once for a consultation, as he didn't want to see me unless I was having surgery. 2014 again and I'm sure my neurologist will make sure that doesn't happen.

I've been seeing the neurologist for the last three years who would then report how I was feeling to the neurosurgeon. Instead of doing research on the 'new' doctors who I may be assigned to, I've decided on something else. For me, it makes more sense to ask my neurologist to recommend a neurosurgeon whom I should see and ask her to advocate for me. I'm not going through what happened in 2009 and 2014 and My neurologist will make sure this doesn't happen.

My brain, food and then some

 Stella on her 17th birthday: October 16, 2017.

I had the chance to get some art done today, even if it was for a short period of time. Usually depends on my attention span and ability to focus which varies.

As usual, my shunt doesn't like the wind or anything else weather related.  A lot of mental and emotional energy is required to interact and socialize with people. Being alert with a smile while your head and shunt acts anyway it wants can be challenging.  There's some pressure in my forehead today, which makes me somewhat anti social
( more so than usual )

 I've been feeling dizziness in my forehead the last few days too, most likely due to the shunt making it's adjustments. For example, when I bend down and stand up again, there is a rush of pressure in my forehead.

The next time I'm in a social situation like a family gathering and I don't feel well because of my injuries/shunt I'll excuse myself to put my head down.

As mentioned in previous posts, since the shunt reacts to the weather, too bad I can't pick up on radio stations, order take out food or something with this ''advanced technology'' inside my brain.

The weather's been so up and down it leaves me confused, brain spinning and makes me want to stay under the covers for long periods of time.

My cat Stella has been sleeping outside my bedroom door at night. She picks up on my discomfort. Her hip is sometimes attached to my leg while I walk around the house. She insists on me sitting on the couch so she can park herself right by my side.