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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Duckface & SJS

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Last Sunday morning I woke up with a duckface. My neck, face and lips were swollen, especially my lips. I had begun to taper on my prednisone, but apparently my body didn’t like that. I went to emergency and found out that my SJS (Stevens-Johnson Syndrome) was flaring.

I found out that I could wax & wane flaring symptoms for a long time. I not only had swelling, but my face started to get the blister rash again. Inside my mouth and tongue had blisters too. My hair is falling out in clumps & feels like dry horrid straw. I may have to get my hair cut short. Will not make any decisions like that just yet. I have not had really short hair since I was 22.

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These flair ups are nothing like before, but still a pain in the rearend.

Nothing like a good health scare to really put things back into perspective again. I had been tossing about what I want to be when “I get better” for the last year. Wasting healing energy and time fretting. I tossed retraining to be a teacher, art therapist, or reflexologist. I guess I thought re-educating would make my worth. I decided that baby steps are a wonderful thing and I will focus on hand reflexology and essential oils. I feel comfortable and happy with this decision.

The thought of post secondary training makes me stressed and anxious. Especially when I have trouble spelling words and I can’t even remember how to cite references. I think it would put too much pressure on me and my health would crap out again. I do not want this to happen again. I want to be healthy, strong and happy. I want the same for Chris and the boys. I spend time with my family and have life adventures rather than book adventures. There is so much on my bucket list and I plan to be a part of this world for a long time to come. Being happy is number One! It no longer professional title or the dollars one makes.

I need to take the time to get my energy back. I am still fighting with acceptance that I need two naps a day to look like I am a together person when people see me. I just need to build a bridge and get over it and accept that this may be the way it is for a while. And if I push too hard, I will begin to back paddle. I don’t want to back paddle anymore.

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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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Brain Rest

Well last week, I successfully worked rest into the schedule.  Yup – three out of four in the house got the flu really bad.  Chris ended up looking after the kidlets so I ended up just having an iffy day of not feeling right instead of the full-out flu.  I was on clean up and laundry duty instead of kid puking all night duty. So when the household is down and out; I slowed down too!  The week was filled with rest among the sickness!  With some brain R&R, I noticed that I was remembering more and feeling totally on the ball with everything.  My head didn’t hurt as much as well too!

On Saturday we were all finally better so we went to our first family movie together – Wreck it Ralph.  This was my first 3D movie. It was a little loud in parts – especially the commercials in the beginning (deafening).  There were a couple of the scenes that appeared fast moving and was really surreal for me to watch.  I enjoyed the movie and I especially enjoyed hanging out with the family unit.  But when I got home, I didn’t realize how tired I was and I all I wanted to do was sleep.  Can you say – Overstimulation – my processor was overloaded!  We went to a friend’s house for dinner the next day and I think my brain still hadn’t recovered from the movie and me  swinging at the playground earlier that day.  My head hurt, when I talked the words were in my head but they weren’t coming out easily or I was forgetting things again. I was feeling disconnected!

All that progress and it so easily took a big step back when my brain was overstimulated.  Who would have thought.  My body wasn’t tired, but the brain was.  There is this crazy  disconnect between my brain & body; and Brain within brain for me to get a message at times.  It is like the brain is no longer in the loop to tell me it’s limits until it is too late.  But will that stop me from life – hell no!  I just have to figure out where and when to take the downtime to recover to feel normal.  I also need to prepare myself when we go out to visit so I have enough rest before and after.

In 2011 I had participated with a group of photographers on Facebook to create your own album cover.  I submitted Road to Relaxation. So fitting as this is a learning experience to really come to terms with the word “Relaxation”; to throw out the my misconception that “Relaxation” means you are lazy or procrastinating; to embrace that “Relaxation” now is not an option but is required for me to allow my brain its extra recovery time so I can function normally.  All I need to remember to heed my own words!


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Natural Adaptation

I did this image and descriptions after my follow up appointment when I was still in Calgary. I had Chris help with some of the details that I had forgotten.  It was awesome to see the before and after imagery that showed the CSF flow.  It blows my mind about how my body adapted because if my body didn’t compensate – who knows what!

No wonder I was a perfect candidate for an ETV surgery.

I had a busy weekend last week that took me until Wednesday to recover.  We went to Calgary.  When in Calgary it is super busy because we want to go places that we do not have.  There was a one hour trip in Ikea (all I could stand & kids play time only); swimming in the pool with two waterslides (noisy);  dinner out (that was maxing me out by the time we left there); value village (that was surprisingly packed); lunch the next morning and conversation with relatives; drive home where I passed out; then came home to a wonderful surprise party with a great bunch of friends.  I was completely blown away.  All this action with little down time fatigued me so bad that it was not until Thursday that I had energy.  I had lost track of days and thought thanksgiving hadn’t happened yet.  I had compeltely blanked on other things as well.  My brain didn’t like me doing all this activity.  I made a schedule of my new routine for my OT appointment on tuesday but I had forgot to put in any down time.  So this week has been no more than 30 minutes on the computer at a time; two naps/downtime rests a day.  I need to take breaks to let the brain heal.  I need to remember to do this.  I am finding it very difficult to do this with a 4 & 6 year old boys; a house to somewhat clean (never been a big housekeeper); get boys to their activities and school; endless laundry; grocery shopping; driving; and maybe a hobby like writing or photography.   I am torn because friends want to do activities and I don’t want to say no – I want to be like I was – endless energy and always go-go-go but that is not possible at the moment.   So this week around mid-Wednesday on has been a successful week – okay Saturday was a little crazy and I am feeling it this morning, but I am not doing much until a two hour play date this afternoon.  Heres to taking successful baby steps in letting  stuff slide.

 

 

 

 

 

 


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On My Own

Yesterday my dad left to go back to Vancouver.  It was my first day on my own doing what I needed to get done.  I had to get the kids to their school and preschool and pick them up too.  I had to go to my OT appointment at the hospital.  I needed gas for the car.  Had to return a library book.  Return a matt and get bread.  Oh yeah and TKD too!  Doesn’t sound like much to a “normal” person does it. I know I used to do waaaaaaay more and then some with my energy.  Yesterday, my head hurt more as the day went along and I felt that I was slowing down.  It got hard to concntrate to people.

Well today I am paying for it and then some.  I had trouble focussing my vision.  I successfully dropped W off at school only to realize that when I looked at the announcement board that I had forgotten about hot lunch sheets and he would be so mad if I forgot about pizza lunch.  I was so lucky to have $5.00 in change in the car – melt down diverted – Phew!  I was a little unstead walking the stairs but hey that is what railings are for!  I made an executive decsion to just go home and sleep.  I slept for an hour as D watched a movie – yup relying on the big box as a babysitter – please don’t judge!  He  kept coming in and asking about what was in his wallet – nap cancelled! I am having a day where I need to rest and recover.  It is all apart of the process.

Yesterday I got an appointment notification for the rehabilitation brain injury clinic for Foothills Hospital in the mail for October 31.  I had to change the date because the kids have been such troopers that it would be such a rip off not to go trick or treating.   After getting this appointment notification, I did search for mild brain injuries.  I found this great story I Wamt My Brain Back.  It is a great read.  The person has had to face many more challenges than what I have had to so far, but I can relate to some of her stuggles.  Okay – I need to get off the computer as I am done – Cheers.


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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.