Howdy Hydrocephalus

Understanding my unique gyroscope


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Re-Discovering

I have been re-discovering the joy of photographing things again with my “big gun” Canon camera. I never stopped taking pictures, but used my iphone or point & shoot rather than take out the “big gun” for anything.  It was waaaaaaay to much effort to organize myself to take the camera out…I wasn’t feeling creative, inspired, energetic or anything and that was a big change for me.  I used to have a system for editing my images for stock and I was forgetting steps and couldn’t remember how to edit nicely anymore.

It has been so much  fun getting out and shooting again.  With bringing out the “big gun” and all  it’s accessories, I am re-learning how the darn thing works again. I am also taking the time to re-learn to edit my images again.  I may begin to upload for stock again, but right now I am enjoying just playing with my images and when I am ready will need to re-learn how I did my stock editing steps.

With all this additional physical and creative energy I discovered the wall numerous times this week where I would get very tired, dizzy, sick to stomach, sore head grumpy person.  I really do know now what the brain/body disconnect is.  My brain keeps yelling at me that I am great, wonderful, perfect; and that I can do anything and everything.  My body then follows through with physical stuff until my body just decides to quit without any notice.  This lack of forewarning had me down for the count from anywhere from two days this week to a few hours of power resting.

I know that I will not be able to shoot pictures right away after my dad leaves so I am trying now.  After my dad leaves I will be focussing on getting some sort of routine that I can remember.  Iknow that I can not hole up in the room to edit pictures because the kids would run rampant and I can’t do more than one thing at once.  I can only focus on one thing so I would lose track of them.  I am also hoping the fatigue will go away with time!  Each week I get better and better.  With the help of Occupational Therapy at the hospital my memory, concentration, retention and understanding will get better and better.


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During this journey, I have found one person online with SHYMA like me. She was diagnosed just before me but still has yet to have surgery. She lives in the US and her insurance has denied her treatment. I can not imagine why she was denied. This is a life threatening condition. I hope that her appeal goes well and her suffering ends shortly.
I am very grateful and very fortunate for having my treatment done quickly in Calgary, Alberta, Canada. I see leaps and bounds every day, as well as, hitting the wall and learning about the body & brain disconnect on my limits.

~My Life with Hydrocephalus~

Last Wednesday I woke up with a horrible ache in my heart, not unlike a broken heart. I was unsure why because nothing had happened the night before, I did not have any bad dreams that occasionally leave me torn for the rest of the following day. Where was this pain in my heart coming from and why? As I began to wake up and be a bit more coherent, I realized my heart was heavy as if a weight had been tide to it and I felt like weeping. Questions started to form in my mind. Suddenly I realized that God had put these things on my heart and questions in my mind. It became very apparent to me that I was going to be changed that day.

Here is a post I put up that morning;

Today my heart is heavy and I feel like weeping. Probably will…

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Hump Day

Yesterday was three weeks post surgery and I am halfway to my follow up appointment back at the Foothills Hospital Hydrocephalus Clinic.  I feel amazing!  I am not going to go out and run 5km at the moment, but I am able to do things for three hours or so before I feel like I need to rest.

Yesterday was a big day for me.  I photographed two other red-headed moms.  It was nice to be creative, but I am really paying for it today.  Yawn as I type with a bit of a head pain.  My head pain is not like a headache, more like a brain overload  – similar to a those laptops that heat up too much!

I went to Tae Kwon do and watched W have his class.  I am hoping I will have the go ahead on October 19 to start back doing some modified classes.  I noticed that W misses me not being out there with him.

I have my appointment at the hospital today for brain testing.  I am feeling quite smart these days – definately clearer than before.  I still will need some help with the short term memory stuff.  I left $2000 of camera lenses at a friends house – big oops!  I know that is a Nikon house so my Canon lenses are safe!

I hope there will be help available for me rather than they just say you are good to go and tested just fine.  I don’t feel a 100% good to go yet.

I


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RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!


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Detour – Under Construction

I have always been a person who didn’t need a lot of sleep, but when I did sleep, I dreamt vividly and frequently.  As a kid, I slept walked and talked.  I don’t sleep walk anymore, but I talk, thrash, and sit up during my dreams. Chris has supposedly had conversations with me as I was sitting up. Much of my creative inspiration has come from my dreams. Being an avid dreamer, awake and in a state of sleep, can be a double-edged sword.  When in stressful situations, I work a double shift.  I remember, as a Forest Officer, when investigating a big field issue, I dreamt and talked out loud about it all night long  for weeks.  I would wake up feeling tired and stressed…the never ending work day. But all other times, it was like having my own movie theatre in my head – very enjoyable and I wake up inspired, refreshed and ready to take on the world.

I awoke from surgery seeing one of the pictures I took at a recent trip to Dinosaur Provincial Park – dark blue sky, with white fluffy clouds on the badland formations looking for dinosaur bones. The was the last long still image I have had.  After surgery when I slept I felt some crazy things.  At first my brain was in over drive and I only saw lines like in a sketchbook movie.  No real stick figure images, but just lines moving at rapid pace making it seem like it was a movie.  I then didn’t see a thing, just felt like I was a swirly screensaver, spiralling downward endlessly.  I then felt like I was in an out of control elevator dropping non-stop.  Each time, I would feel these, I would then just pass out in some deep sleep.  I would see flashes  & flickers.  About five days after surgery I would see flashes of still images – dream fragments. Then those disappeared as well & I am back to just feeling the swirly motion or flashes of light.

Scientists are still trying to get a grasp on why we actually sleep and dream.  After my brain surgery, I think I lean towards the Restorative and Brain plasticity Theories  where sleep is needed to help the fix body  from the day’s wear and tear.  Dreams are also thought of as a way of processing of what went on in the day where  you are keeping the good stuff, and throwing out all the clutter so you are good to go for the next day.

My brain was hurt with the hydrocephalus and invaded with a small tube via endoscopic surgery.  I feel very certain, my brain is trying to heal itself as much as it can.  I think the dreaming function of the brain has been put on hold as there are much unknown higher priorities that need to be taken care of first. I mean there are approximately 1000 trillion connections in the brain and some need to take time to get fixed or re-routed.  Although I want to Dream On with my own personal collection of movies; I have to remember  not to get frustrated that my dream highway is under construction and I have been re-routed down some unknown obscure road.


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Interesting Read

LuKas At Work

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Today is the official Roald Dahl day, when we get to celebrate the swizzfigging, scrumdiddlyumptious writing of the man himself! And Roald Dahl Day 2012 also marks the 30th anniversary of The BFG!

Roald Dahl was born on the 13th September 1916; he was a novelist, poet, screenwriter, fighter pilot and inventor (when his son Theo was 4 months old he was severely injured when a taxi struck his baby carriage, and as a result he suffered from hydrocephalus. Dahl became involved in the development of what became known as the Wade-Dahl-Till, a valve that helped alleviate the condition).

I was trying to remember what the first Roald Dahl book I ever read was and I can’t – all I can remember is re-reading his stories over and over again. I loved The Witches, The BFG and Matilda. I loved reading about his life as a child in the book…

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