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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Missing Me

For the last month and a half a series of events accumulated for me creating the ultimate pity party for missing my old self. This reached it’s peak and dissolved mostly when my son re-broke his right leg again. He broke it the first time in October during hockey assessments and the second time at the last game of year in a tournament last week.

So what led up to me missing my old self? Me missing the old me has never gone away. I was so much more than what I am now. I was an adventurer, I had endless energy, like to keep busy all the time from morning until night. I was raised to be a strong independent person. I was not afraid to use my brain, my voice, reason and research to get my point across at work and in life. I had two little kids that never knew that they accompanied when I had field work. They thought we were always out for a drive. My kids were to young to remember the old me. They only see me as the “lazy mom” who sleeps all the time. Usually I laugh it off, but lately, it has been hard to laugh off my quirky new me.

I am a lot different now. I am Skinnier than I was before by about 15lbs but I am 1000% times weaker and 1000% fatigued where when walking up stairs, I lose my breath. I am no longer spontaneous, I have to plan and allot my day so that I can make it with the least amount of napping as possible. I have to plan my day to minimize my visual, auditory stimulation, so I don’t get overwhelmed. Sometimes that requires me to do odd things, like move to where less peaople are, leave or just not go at all. I easily forget what my intent was for shopping, even with a list. Often I will forget the same item on the list five or six grocery trips in a row. I just misread the word or don’t the the word. I try to understand group conversations but honestly, that takes a lot of work and usually am behind in process in the conversation so that when I talk, I am behind. My anxiety goes off the charts in the new situations with people. My mind goes blank so I don’t remember what I am going to say and my stutter comes out.

So what led of to not being patient about the new me and missing the old me was seeing people from my past and then socializing with new people.
I had three bosses. Two I was very close to and both their wives were just awesome. I say 2nd in command’s wife at a local store. We were chatting about paint chips and colours when she said “Don’t you recognize me?” Awkward is all that I felt. We chatted for a bit and I left.

Then two weeks later, I saw the company founder in Canadian Tire, we were both looking at the seed growing trays. He gave me a big hug and we chatted. He wanted to know about my health but at the same time, you could see the sorrow in his eyes and he really didn’t want to talk about my health. Then I got his wife’s name wrong and we parted ways. When we were talking, my vision started to get all wavy like aura’s for a migraine. I made it out to the car and rested for a bit, because I thought I was going to pass out. After this I felt physically horrible for a few more hours.

I then got my recent neuropsych report in the mail. That was no picnic to read. It is hard to read that I have neurocognitive impairment typical of Hydrocephalus Squellea. I started to feel so crappy that I began to visual journal to help boost my spirits.

A week ago, I was thrust into my first ever hockey parent away tournament. The social anxiety got a hold of me more than a couple times and there were awkward moments, bouts of word finding, stuttering and complete mouth hanging open zone outs, but I survived. I had a fun time…socialized, drank some ciders and beer and got to know some great people. But so very very tiring. I didn’t get my rest in and my functioning was near empty when my son broke his leg. I spent so much time recovering that the Easter Bunny almost made a big mistake. I had thought I had bought Easter Candy so when hubby and I went out, I said we didn’t need much. So when I checked the bag of stuff I had originally bought there was only two Easter Bunnies. I raced out the the store last night around 7:30pm to scour the empty shelves and peruse the Easter Aisle in hopes to get more Candy for the two kidlets and our two international students. CRAP….today I remember that I never did buy much because we were to be in Vancouver for Easter. So problem adverted right.?! I stocked up on candy…now we have enough to little eggs and jelly beans to last until summer. I fall asleep, D crawls in bed with me while Wy and hubby are downstairs sleeping. At 1:30 I jump out of bed….crap…the Easter stuff needs to be put together and hidden. So for an hour…I am trying to hid candy with a restless broken leg kid on the living room couch who is sitting up in his sleep, calling out and I am ducking behind chairs, doors and the kitchen Island. All I can say is that morning came too quick and I have had a lazy lazy day of reading, sleeping and eating chocolate.

We did have turkey for dinner, but instead of a full turkey, I got one of those box turkey breast rolls. Kept it easy and it made a world of difference. So the events of last week kicked me out of my own personal pity party and I am glad. I am sure they will pop up again.

It is just so hard because people you used to know…know you for when you were so much more. Now I just don’t feel whole. I am grasping,,,cringing when I respond that “I am a stay at home mom”…my bias and self-loathing running in my head. It is not like it is really popular to say “Hey I am one of those lazy people on CPP disability who should just get out and get a job” It is currently a rough economic climate so when people spew their frustrations, I am unknown to them usually a part of the lazy crowd. I just keep quiet, but you know it still stings. Doesn’t matter even as an adult, when people are mean spirited or cruel it still hurts. It is hard when the people around you also get tired of “supporting or caregiving” for you. They don’t like the added responsibility of picking up slack. I just can’t get anything done. I forget I was working on organizing my passwords, I forget I was working on a business plan, I forget to cook…I just most likely get distracted by other stuff and short term memory loses it. I forget what to do for my day unless I write it down the night before. A week later, I will not remember what I did.

So I am glad for the helping distraction. I have learned this week I still really like my art and creative making because I missed it so much. I also have enjoyed helping my son quite a bit. It feels good to be wanted and useful. I guess I will continue to take the good with the bad with a smile on my face and eventually, all will fall into place. When you fight for stuff and keep getting walls, then maybe that is not an intended path so I must continue to remind myself to be open and allow grow and move forward on it’s own. And yes to my lack of patience…it will take time. GRRRRRRRRRR!


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Neuro plasticity

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Found this article & thought I would share neuroplasicity
I wish there were more treatments here that were covered by health care. Need to ask my brain doc Neuroplasticity, also known as brain plasticity, is an umbrella term that encompasses both synaptic plasticity and non-synaptic plasticity—it refers to changes in neural pathways and synapses due to changes in behavior, environment, neural processes, thinking, emotions, as well as changes resulting from bodily injury.
Neuroplasticity – Wikipedia, the free encyclopedia

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