Wednesday, January 3, 2018

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. 


Friday, December 22, 2017

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.

Friday, December 15, 2017

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.

Sunday, November 26, 2017

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.

Saturday, November 18, 2017

Dear shunt, I hate you.

X Ray image of my shunt from 2016.
At least last weekend was better. This week my shunt has been misbehaving causing pain, throbbing sensations during different days. Today has been the worst day so far. (aside from when the eclipse happened over the summer. ) I was up off and on during the early morning hours from shunt pain.  The only reason why I didn't stay in bed with my head buried underneath a pillow was because I'm suppose to volunteer for a few hours this morning into the early afternoon. I hope I feel better when I return home later today. I checked the weather report and see there will be rain in my area this evening. As mentioned before, my shunt ( like many others ) predicts and reacts to the weather. I also have right eye pain this morning from the TMJ and some nausea from the shunt. At least the shunt is not beeping like it did in 2016.

Monday, November 13, 2017

4.05 miles

Snapshot of the t-shirt I received.
Yesterday, I participated in a walk for literacy event in my area. I walked 10,661 steps, 4.05 miles which took about one hour and 28 minutes. I almost didn't go yesterday, as the head and shunt pain was bad in the morning, making me not want to get out of bed. The only reason why I made myself get out was because I had registered for the walk and made a donation. I'm glad I participated, as when the walk was over, my head and shunt pain was gone. This lasted until it returned for a short time in the evening until going away again.

This morning, forehead and back of head pain returned. The shunt, for now, is behaving itself. I still have head pain about and hour after eating and taking pain reliever medicine, so I hope it will be either gone or greatly reduced by the afternoon.

Saturday, November 11, 2017

Wind and then some

Yesterday, where I live it was very cold outside and windy. My shunt as usual, didn't enjoy the cold weather. I experienced all day pain from the shunt valve, down the side of my neck where the distal catheter and stomach.

I did not like this.

Since I didn't have to go anywhere I stayed home, found some movies to watch. I didn't attempt to do any art, as the pain in my head was really bothering me and made me grumpy.

Today, I'm happy to report my shunt is feeling better. It's not as windy out as it was yesterday even though the temperature continues to drop.  I was tempted to exercise yesterday, although I didn't because the pain was annoying me. Tomorrow, I'll get to walk in a literacy walking event at my local shopping mall.