Kind of happy medical device

For almost two weeks, my shunt has been behaving. It's sort of a shunt miracle to have had a several days without any discomfort.  Last night, I had some brief pain issues. Nothing nearly as bad as almost a month ago, when I had stabbing pains in the shunt valve, right eye and distal catheter pain/nausea. Earlier this week I went to my local brain injury support group which meets at a nearby medical center.

This meeting was a separate group for caregivers and survivors. The last time I had attended one of these groups was last year and it was a combined group with both caregivers and survivors.

In this week's group we spent time talking about grief and how it relates to brain injury/disabilities of any type.  Some of the grief rights we discussed in the group are the following:

1. I have the right to have my own unique feelings about my illness or injury. I may feel mad, sad, scared or lonely. I may feel numb or sometimes not anything at all, No one will feel exactly like I do.  I think some people don't want to feel the pain you're feeling or they just don't know what to say. Or they just don't want to think about what you actually went through because it's too painful for them to experience.  

2. I have the right to need other people to help me with my grief. Mostly, I need people to realize that my grief is normal and people who will listen to me without judgment. One of the reasons I'm going to attend more support groups in my area. The one I went to earlier this week also has a walk event every year which I went to last October. They also have social gatherings. This summer, they're going to have a bbq for the group. 

3. I have the right not to 'think positive' or 'be grateful' when I am grieving these losses.  I've had people right after my injuries tell me I needed to be more grateful because there were people worse off than me. My response was I never said I wasn't grateful. It was easy for me to re-learn the first three years of my life.  I've offered to give people who say this to me the same injuries I had and they usually stop talking to me about how I 'should' feel. 

Explain the brain away?

Last week, my medical device caused me pain in different parts of my head, neck and face before a lightening/thunder storm. This week, the vertigo, and tinnitus I haven't had for a while now has returned. I'd rather have these symptoms than varying degrees of pain and discomfort. With both, putting my head down and taking some pain reliever/moderate exercise helps.  

I've found it a challenge at times to explain to people why/how pain affects you the way it does. People who haven't experienced brain injury and what happens to the body after sometimes don't know how to interact or respond to someone who is experiencing pain from a brain injury. Some of the pain I've experienced is related to things in the atmosphere such as weather, other devices in the area, or stress. 

When I hear things like 'Oh it's just the weather' or "Just take something for the pain' Sometimes the pain doesn't go away with pain reliever, it only diminishes to then return again later. I've provided things for people to read about pain management and brain injury. I do believe when it's family members who inquiry about your pain, they don't want to remember why you're feeling the way you do. Sometimes it's just too much for them to deal with emotionally. There are also some people who don't have empathy. 

It just depends.

This afternoon around 3pm when the sun started to emerge from the clouds, my shunt and right eye pain returned. It's suppose to rain tomorrow. A family member told me this afternoon regarding my pain 'You'll feel better soon' My reply was 'Yes, I will, it's just that my head and eye doesn't know that right now. Right now, I feel pain that hasn't gone away for a few hours now.' When we feel pain, do we have to apologize in advanced for feeling grumpy or tired? 

Dear Shunt, I hate you part V

Dear Shunt,

Too bad separation isn't an option. Unless I want my brain to herniate without you.

Hamsa pendant I made at library earlier this week. 

In other news...

Monday, Tuesday and Wednesday this week I had consistent all day shunt pain, nausea and right eye pain. Not sure where the right eye pain was coming from. Whether this was related to TMJ or my eye surgery 3 years ago. 

I suspect shunt pain is from the thunderstorm we had on Thursday night. Yesterday and today have been better. Tuesday, I had an arts & crafts workshop at my local library. The shunt valve pain was bad and I decided to attend anyway. 

I had to leave early as the pain was bothering me. I was happy to put my head down once I got back home. Pain reliever minimized the pain, only for it to return later.  I also don't make a habit of taking too many pain relievers during the day.  

Dear Shunt, 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.