Howdy Hydrocephalus

Understanding my unique gyroscope


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Growth

At the end of 2011 and through 2012 until I was diagnosed with Hydrocephalus was heartbreaking, confusing, as I lost my facilties with reversible dementia, my body strength with my right side going numb, fluid coming out my ears at night and nose during TKD and running. The initial lack of support from people due to the fact that everyone thought it was just a mid life crisis or was faking with my right arm not working properly and right leg dragging; fatigue; memory isues and neurgentic stutter.

After diagnosis there was relief that I was not losing my mind. I look back now and there was a cognitive break in awareness and understanding the severity of my brain and body. I had no fear of surgery and was hell bent on getting out of neuro icu and home that I was the wandering patient. Determined to pass all test to go home.

Then there was optimism of recovery at the Brain Injury Clinic. Being told not to drive….pshhh…whatever. I drove until my Brain Dr. called to let me know there was space for inpatient in Foothills. She gave me crap for driving. I thought she was crazy…I could drive no problem. I only had energy to go up and down the hill to drop my kids off at school anyway…my new visual world was almost like a surrealist painting, swirling, motion and blurs in a constant movement on hyper drive volume.

Inpatient was amazing. I recieve physical, recreational, cognitive, speech and life skill re-training.  Had to re-wire the zombie. I was alive but my ability to communicate was limited. There I found out that I had minimal Affect…thus no driving…if my Dr. had only explained that.

During the first three years, My hubby and I were in denial that there would be a full recovery. It through both of us for a loop as we slowly realized that no not a full recovery to the old me but a continual recovery for the new me. Let me tell you…yes there is a fulll on grieving process for this. You question your being…burden…useful/useless…where do you go when your entire being has been smushed in that damn brain. Well you can roll over and say fuck it – off yourself…drink…smoke meth or other drugs…run away and become invisible or try to pull up your big girl pants while saying suck it up sunshine and move on.

The moving on process is the most frigging frustrating. It is not like you will just get healthy, come to a finish line and say Hey I am done with a pat on the back and participation ribbon. Hell no. This is uncharted territory and you better be in it for the long haul. There are many hill climbs…some are easy….some you are stuck on a ledge for a long time…there are rockslides and tumbles down to the bottom…only to start over again. Then there is success you reach the peak, plant your flag only to look forward to see endless more mountain peaks. So you decided do I go back down and start the new climb or stay put and be happy/angry/miserable/positive/content/pissed…the choice yours to make.

I have learned to keep going even when hanging on by a thread, dead dog tired and feeling alone. Sometimes is for me, somtimes it is my pure red-headed viking stubborness, sometimes it is my family, sometimes it is for friends, but I stumble forward, backward, upside down, or sideways but I move and often it clicks together. The recovery process is not a straight line….it is a wacked out angry scribble drawing that doesn’t make sense at the time but when you pull it out later you see what makes sense in it.

I have found a new me. I am not completely new, there is some old me still mixed in with my wacky and wild new me. Most days I embrace and accept my quirks…hell there is no on this earth like me. I have found new meaning, direction, tribe and currently working on building my community.

I have been giving an opportunity run a volunteer peer art expressions group. We had our first meeting last Wednesday. I am enjoying the creative sharing and strategy sharing for all your challenges we have been faced with. I think with our digital age, we tend to minimize sharing and connecting and supporting a people who are needing help. Often people put the blinders on and ignore the fact that we are broken crayons but we all can still colour. This happens so much for work. Company’s mostly hire full time. I will never be able to do that. I think my energy levels and my time requirements to keep my body working will allow me only minimum part time at the most.  I am super excited to share my experiences and hope to bring  support to others who are at different stages of their chaotic life changing journey. So my Community growth so far for this year is being involved with this. I am so grateful For Medicine Hat Alberta Health Recreation Services for coming up with the idea and allowing me to participate.

I have gained strength mentally and spiritually. My physical side of me was still lacking. Since December 2017, I made it a priority to get my physical me into alignment. It has been a challenge for me not to push too hard. I still had days where I thought I could be like who I used to be and had to recover, but not as many as previous attempts. So my big growth and accomplishment physically so far in 2018 is me running the 3km Rattler Run. It was the 2012 3k where I came 3rd when my entire right-crapped out and went lazy, funky and irradict because of the pressure in my brain. Not a stroke, but pressure related damage That I have worked hard to minimze. If I don’t do my rehab exercises my brain will get lazy and then my arm and leg gets lazy again. Now it really only comes out when overwhelmed or overtired.

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The Rattler Run theme this is year is so appropriate. I am running for me! Whether you are on a health journey too or just an average joe happy, sad, going through other chaotic life events….I challenge you all to challenge yourselves. Let me know what you are doing.

Cheers,

Kelly

 

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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.