Howdy Hydrocephalus

Understanding my unique gyroscope

The Summer of Milestones

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This summer has been amazing. Because I have been on my pituitary meds and energy medicine for almost a year, I have gained ten pounds, built a little muscle and endurance back.  Because of this I pushed the physical side more than I have since my brain surgery five years ago. 

Last summer I started with some easy flat hikes; paddle boarding more  and just flat easy biking. This year we have not hiked much but instead took to my old passion mountain biking. It was a spur of the moment when I bought my new to me Marin at a local bike swap. We went there to get the Wy, D & Mr. C new to them bikes.  We started the boys on flat trails, then logging roads and then to some trail riding. Well it was a test on my patience because every ride there would be one frustrated boy in tears because he fell one too many times or sacked themselves from not listening to me about riding the trail off their seats. Being the mean mom I am, I would say falling is apart of the experience. The bruises and cuts are stories to tell. I would say they are building balance and muscles that will help for hockey. We did 20km flat rides but shorter trail rides but often there teary statements of “I am never riding a bike again” to only ask to go biking the next day. Wy gave me the best compliment the other day. He called me a ” mountain bike expert”. I laughed and said “I am far from an expert. The last 50km ride I did was a long long time ago.” But It made my day and said “thanks”.

The biggest milestone took place when my brother, R-man and his two kidlets, C & M visited.  When I lived in the Kootenays many moons ago I spent a winter travelling 50km each way to learn how to kayak in the Nelson, BC swimming pool at night. I kayaked until I moved to Manning, Alberta. Six years ago, I bought a white water kayak again. I think I only used a few times before I was too sick to. Then the spring after my surgery I liquidated all my fun stuff I couldn’t do anymore; camera, studio equipment, kayak, TKD equipment, running shoes, cruise vest, soil probe, and identification books for work. I kept my Giant & golf clubs.

 Last summer we wanted to go white water rafting but we ran out of time. So after we were all together I called Canyon Raft Company located in Fernie, BC. I booked us all. I showed the kids pics and when I saw the looks of terror on two of their faces, I said that the pics were taken at higher water levels. We were rafting at low water levels knowing that I was telling a small fib. 

So we drive to Fernie Alpine Resort where we are picked up on the bus. The driver, who is one of the two owners, let us know about some Great Lakes nearby and hiking. In Elko, we got to see where there is a 40ft waterfall where some very experienced kayakers like to drop off of only at low water because even then it is dangerous. It was beautiful. We then drove to our starting point.

But before we got into the rafts, we got our gear on, wetsuit, helmet & paddle for most but not for someone like me that has body regulation issues. When I get cold my fingers and toes can turn white or purple. But I was prepared. I brought my swimsuit, on top of that I had my thin one piece thin outfit for paddle boarding, next the wetsuit, then water socks, I also grabbed a spray jacket and eye Glass band. We received a lecture about the gear and our hike down to the boats.

The hike down was beautiful. Sport sandals or shoes that can get wet mandatory!!!

At the bottom we met all the guides and the photographer. We received a very thorough safety briefing and then were broken into our groups for the paddle. Our guide has been in Canada six years. She left Melbourne for the mountains – water in summer and powder in winter. Along with us is the owner of the company and the seven of us. M is too nervous to paddle so she rides the trip but gives us all the best facial expressions that we see in later photographs. I am grateful to have an extra adult because I am not too sure how the three boys in the back are going to do….mmm…slack it and watch the adults work…I am almost 100% sure. R-man and me are in the front. With Mr. C behind me.  Once settled with the group photo taken we are off first down the river.  Whoa…hold it….we are the last boat in the line. I picked it because I thought we would be last….oh but no..here we go with the first two sets of Rapids back to back. All I remember is one is called something about marbles.

It is a weird feeling. Trying to coordinate paddling with R-man while trying to keep an eye ahead and listen to our guide’s directions. All I could think of was am I dong this right, trying to have myself breathe to calm down and not get overwhelmed and not to get distracted by the scenery or water.  Around the bend we go and wow the adrenaline is kicking. Once we finished we relax and wait for the other three boats. We have two fall out from one of the three boats but everyone is safe and put back in. During our waiting my right side is going all twitchy and my right arm feels weak. The thoughts that go through my head are “oh no…am I done. We just started. Can I paddle the entire  What is going on. Am I dehydrated?” I have some water and it was the right thing to have. Then we forward paddle into our third rapid…something about a shoe. 

 Here we are heading into the third set. We hit a rock with a jar and all stay in.  I go ass over tea kettle after we hit a second rock right when I am leaning out to paddle a wave. My paddle stays with me in a death grip. Mr. C see me go in and reaches for me and he goes in. When I fell out I couldn’t see a thing. I wanted to swim to boat but then was told to put feet up and cruise and that is what I did. I flew. It was awesome, you can see they had to throw the rope float bag at me. While Mr. C got to hang onto the outside of boat. I grabbed C’s paddle as it floated by me. When I get in, we are all laughing. Wy said he flew into C, C lost a paddle and D was flying and was heading for the water but was saved by our amazing guides. What a rush!!!Mr. C goes up front for the rest of the trip and we go have more rafting fun….brrrr. I am working so hard that I am still keeping warm. Win for me!!!

We make it through the rapids to an amazing float section with pristine coloured water. Then we have lunch. After lunch before we hit the canyon we get to try our hand at cliff jumping. There are three choices low, medium and high jumps. Of course Wy & C start the trend with the medium jump.  Mr. C does the large jump, I do the medium jump & M does the small jump.

Here they are jumping.then all our guides show us how it is really done.After this we hit the canyon with a waterfall, lots of whitewater, surfing a hole…during lunch I got really cold with purple fingers. I ended up lying on warm roaches trying to stop my teeth chattering. I ended up putting on the spray jacket for rest of trip, except cliff jumping and it saved me. there was so many much action that everyone was hooting, hollering, screaming and laughing.  We had to avoid a big rock by turning and hitting a rapid. It was the best rapid of the day….okay hard to choose favourites but I think the adults in the group agreed with this.D raises his arms in glory. We missed the rock. But the best fun for Wy, D & M was….riding the bull. When we hit the landing place, I barely could get out of Raft, my coordination, balance from my whacked internal gyroscope was completely off. I was shaky and didn’t clue how dehydrated that I had become because I was cold, I didn’t drink. Mr. C helps me get dressed in dry clothes by holding up towels. I was riding on a high that I had completed this milestone. I knew that I had used up all my spoons and would need recovery time but it was so worth it. We will be doing this every year from now on.

I was not the only one beat. R-man & Mr. C were sore; the kidlets fell asleep on bus ride and in car ride to Coleman. 

Mr. C always gives me crap that I push myself too hard. I say that if I didn’t push myself as hard as I do, I would still be shuffling my right foot and having a right hand that accidentally drops or throws things. I know self care is mandatory but so is also living and having fun.

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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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Highlights of a Brain Injured Summer

The road trip from Medicine Hat, AB to Richmond, BC is about 1400km. Not too long. We had travelled it as a family a lot before my surgery in 2012. Before kids, we would do a trip this distance no problem. Before I met Chris I would do a trip similar in one day. Now it is a multi-day adventure! I brought along a tent that i thought all of us could fit into….two adults, two boys & two dogs. Nope. Driving to BC the boys & one dog slept in back of minivan and the rest of us in the tent. I Corrected situation for our trip back by purchasing a new tent that is so big that it could house all of us, our luggage & probably a small country as well!

So not only I had a misperception glitch with the size of the tent, I somehow let it slip that there were four people in the family and insteadI brought three pillows and three light sleeping bags. We made due as the boys had their polar fleece blankets (thanks Sara for those christmas gifts!) We didn’t freeze but came close the morning in the mountains where we could see our breath.

The brisk morning in the mountains, I announce to everyone that I am going to drive. It is early morning and I had lots of energy. I know the vehicle or at least I thought I did. We get going and i try to put the cruise control on. i keep pushing a button and the speed doesn’t stick. I slow down…I speed up & try again only to slow down…so I sped up. Not only are we slowing down & speeding up but it is on a winding road with traffic. i am trying to find the right button, not get us killed, not piss off the drivers behind us and listen to Chris at the same time trying to trouble shoot why I can’t get cruise control to work. This wonderful smooth driving experience lasted for about 30 minutes until I have to pull over because someone in the back voiced that they are going to throw up. I safely pull over; we all minus the dogs get out. To the relief of everyone on the trip, I give up the keys.

We planned on going swimming on way to Vancouver, but it wasn’t until we were going swimming that i realized that we didn ‘t have any towels with us. Oops – drip dry everyone!

I thought it was the longest road trip since my surgery in 2012. My mom insisted that the dogs had been at the house before. I thought she was nuts. Apparently halfway into the three weeks of being in BC, and after being cued by my grandmother when in Campbell River that Yes I did visit last summer and this summer too!! Okay where did that experience go. Apparently into the void of jumbled thoughts until it was recalled with an event that i remembered. That is when the pieces started to fall into place.

I spent seven hours fighting with a hard drive that wasn’t being recognized by my mom’s computer. I cursed her old technology and tried downloading drivers etc…only to be outwitted by a cord change. I was using the power cord USB instead of the computer transfer USB. Computer technology 1 me 0.5 as i did get those 800 images transferred safely to my external drive and off my phone and camera!

We decided to do a family trip to Bellingham, Washington. Six in the minivan, idle conversation, radio on, road blurring by – big box stores, the mall & I am so proud of myself. I made it to lunchtime. I only had one little overhwelming incident – I couldn’t decide on anything for the boys so I just piled it into a cart and tried to find them.

We decide to get lunch and unintentionally left everyone hanging in the food court for an undetermined amount of time. I honestly only wanted to check out one store but got distracted and wandered aimlessly in and out of stores being slightly overwhelmed but proud of myself that I was actuallly shopping in a mall alone. However, I did not take into considereation the 5 other people waiting in the food court – oops!

After I was found intact, unharmed & with shopping bag in hand. I appologized to Chris. As we walked towards the food court Chris asks if I was wearing my dress inside out. Ummm…I look down and I am! Apparently all the visual and noise stimulation did affect my ability to dress myself in the change room correctly.

I am spending every night reading again, but I am still not remembering very much. I am frustrated with that. I am happy for finally clarifying a goal. I was all ready to dive right in, but Chris and his good reasoning stopped me from doing any school for now. My head pain level started to increase and become a steady daily reminder that the Botox effects were wearing off. I didn’t let that or my constant feeling sick stop me from trying to give the boys a great trip.

It irks me to no end when they call me lazy mommy for sleeping. It is hard to keep up to them all the time and be able to do stuff. They are too young to realize the implications of everything but I hope that when they are older they will understand. I hope to still get more and more energy as time progresses. First goal though is a better brain!

So after three weeks of laughter, glitches, laughter again. The only thing that can get you through a road trip and an adventure that the family is on is laughter and rolling with the punches or lack of towels, sleeping bags, coffee etc! Heres to a great second half of 2014 with more improvements with 40 more Botox shots & cognitive training!


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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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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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No Zombies Allowed

Brains

I have two little boys.  W is six years old and D is four years old. Both have been fascinated by zombies since the zombie killer app for the tablet and being introduced to the Plants versus Zombies game at the library.  The boys recently got the Plants versus Zombies game for their DS systems.  The boys love that the zombies in the game say “Brains….brains….braiiiiiins!” The boys love to run around pretending to be zombies and shouting out “Brains…mmmm….Brains” especially now since they found two different zombie costumes at the store.

Yesterday, we had to run down to the library to return some DVDs before heading to Calgary.  As I was getting the boys in the car, they kept asking when we were picking up Nana & Papa.  I explained that we were heading the Strathmore tonight and pick up Nana & Papa the next day at the airport.  I then said that “Nana & Papa were coming to help out when Mommy has her brain surgery on Tuesday.”  We have been very open about my surgery, but both boys never asked any questions or said anything because they have been too excited to see their grandparents.  So out of the blue, W asks “Why am I having brains removed? Because if you have brains removed you will become a zombie.”  D then pipes up “If you become a zombie you will be kicked out of the house!”

I laughed and said that “I am not having any brains removed so I will not be a zombie.”  Both boys says “If you become a zombie; you will not allowed to come back. No zombies allowed!” So I guess I have been given my orders that on Tuesday, I am not to become a zombie!


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Super Powers

Copyright 2012 KB Photography

Growing up some of us wanted to know if we had super powers like flying or walking through walls.  Well I couldn’t fly – that is without a plane  or walk through walls – still trying that one (LOL) but I have discovered a super power that have developed from hydrocephalus.

This is not a super power, but can be part of the fashion sense of a hydrocephalus hero. For years, I have been sensitive to light where I generally wear sunglasses all the time.  No I am not trying to be the cool gal, but my eyes hurt during winter, cloudy days, foggy days and of course sunny days. The only sun glasses are that let in little light are the cycling style glasses which is great as I am usually an avid cyclist.

So my super power, a side effect of hydrocephalus, is having intensified hearing.  I am sensitive to sounds.  This has been going on years, where I  usually end up complaining that the TV, movie or radio is too loud.  Where I feel comfortable watching is where no one else can hear in my household, thus making me a crappy TV or movie partner.  The only movie theatre that I can enjoy in Medicine Hat is the Monarch Theatre where the sounds are not over the top.

However in the last nine months my hearing has gone into overdrive and although I mostly think it is  really cool, it can be overwhelming too.  There is noise around us all the time.  We generally just ignore the background noise and tune it out. However, background noise is no longer background to me.  It is like a kaleidoscope of cars, trains, people, birds, dogs, wind all swirling about.  It makes it hard to concentrate or sleep at night.

On most days I can deal with it, but on days when the pressure in my head is high, sounds like the zipper banging against the backpack you are carrying or the wheels of the trains down the hill, kids screaming or any renovation tool are beyond annoying and become painful.  I usually just pop some Advil or Tylenol to help alleviate pain. This past weekend, we escaped the renovation tool sounds, city sounds and television sounds went camping at Dinosaur Provincial Park.

It was nice, I relaxed and slept.  I even took pictures and enjoyed listening to the wind through leaves of poplar trees and prairie grasses.  Overall I am glad my hearing is intensified rather than losing it and missing out on all the sounds that surround our life.