Howdy Hydrocephalus

Understanding my unique gyroscope

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I Survived Spring Break

On Easter Sunday, my friend, her two children, me and my two kids took off to Cypress Hills Resort at Cypress Hills Interprovincial park Saskatchewan side. We rented a three bedroom cabin for approximately $130/night. But even better was the buy two nights and get the third free.  Sweet! great trip for us budget minded moms. First off, it was the longest I had driven and I was a little nervous. It was not only the nap before leaving; coffee and sugar that made the ride smooth, but also the road conditions. In Medicine Hat we woke up to to an inch or two of snow, but in the Hills there was a record snow fall of 1.5 feet of snow.

Before leaving, I quickly packed winter gear and sleds. Yup I am writing about my journey with a brain injury and all my photos show sledding without helmets. Let’s just say that the brain injury got in the way and I forgot some important stuff. No way was I going to get beat up by four kids so they went sledding on our third and fourth days there. There first two were very chilly but fun. The snow was super soft, melting quickly and we were the only people there sledding.

It was a great time, we played card games, charades, drew, read, and the kids played minecraft on their tablets. Us mommies on mommy time drank copious amounts of wine. Yes I have a brain injury, but I am allowed to splurge on negative brain influencing behaviours. I re-discovered white wine. It has been forever since I drank white wine.

We went on lots of walks as a group. The kids played outside without us. I had my two hour nap every day! We had a great time, but on our fourth day, I thought I packed up all my stuff in the vehicle, I forgot food in the fridge and cupboard. Oops! Then instead of driving home right away, I went on the hunt for moose to take pictures. Got a couple shots of deer but that moose always evades me until summer.

The drive home was bad. It took everything I got to keep my attention on the road. I was exhausted but knew that Chris was at home off work for the next six days so I would be able to rest up and recover. However, I was wrong about the recovery time. Chris’ mom was having urgent health issues that required him to fly to Newfoundland right away. So he left Thursday. The boys had a sleep over on Thursday night; Friday I took the boys to the skatepark. Saturday & Sunday I really do not remember much except Chris was back Sunday night exhausted 13,000km in a few days was a lot. Monday I don’t remember much. Tuesday, I went to my son’s grade three class and did a presentation on photography composition. Then they all got to go around and take photos with their Ipads. I hit the wall after that. My right side was all tingly, numb with imaginary fire ants marching everywhere. My right eye and perception started acting funny. My usual head pressure/pain intensified with the feeling of a kitchen butcher knife at my surgery site and an ice pick through my right eye. The pain is intense that you no longer feel it but just feel sick to your stomach.

It is now Thursday and I am feeling a tad better, but not really. I have been getting up in the morning getting kids to school then going back to bed. I have been using my oils, but nothing else. I need to start up my vitamins again. I just got out of bed at 1:15 feeling like I should write, but now I am going to crawl back to bed for one more hour.

I would not give up my spring break for anything. I had fun. I pushed my TBI boundaries and Yes I will be most likely paying the price for the next week; I am glad I did.


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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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Grateful and a Big Shout Out!

I just wanted to give a big shout out and thank you to all those that have been reading this blog.  I have had people from 11 different countries read this blog.  I am amazed.  I know that I search the Internet every night looking for someone going through the same thing to connect with and so far I haven’t found a similar story.  I have read so many stories about parents finding out their child has hydrocephalus in utero; their emotional struggles; their child’s physical struggles once born.  Or I have read stories of older people, one step away from being put into a home & being misdiagnosed for years; to being successfully being treated for Normal Pressure Hydrocephalus and gain their life back. It has given me a new perspective on the word perseverance and strength that makes my journey pale in comparison.

September is hydrocephalus Awareness month in the United States. The Hydrocephalus Association is an amazing resource for support, stories and research. The Hydrocephalus Association is the organization that developed the only guide for the unique SHYMA group which I fall into. In Canada there is the Spina Bifida & Hydrocephalus Association of Canada which I thought would be a great resource until I received an email from the Alberta representative indicating that they only support people with Hydrocephalus as a result of having Spina Bifida; so I am shit out of luck!  Nice no other help from them or suggestions. I was ready to help support and promote, but now I feel that the Spina Bifida & Hydrocephalus Association of Canada can kiss my arse! (vent done!)

I am appreciative and very grateful of the support shown to me online and in person.  This experience has allowed me to re-introduce myself to writing again. I had moved away from writing for me to putting out technical reports.  Now that the fog has lifted, I am excited to continue writing as it is my re-introduced love and to begin to shoot photographs again.  There are a couple of contests that I would like to enter.  Once my kitchen is done, I see a stock shoot calling my name.  I am always looking for models for this – family, couple, cook etc….  I just have to get better to be able to set up the lights and move freely from downstairs to upstairs.  I can not wait! In the meantime, I have about a 1000 images to upload to edit and upload to stock – if only I could remember how to edit efficiently again.  Damn brain misfires!  I think this may be a hint for me to move from Photoshop CS3 to Photoshop 6 – dare I take the plunge to learn a whole new platform…maybe…but not in the next couple of  weeks, but soon I think.