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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Warning Evil Villain Neurological Strikes Again!

images (6)I was all prepared to wait another week then give you a great update on my personal chaos but then something important came up and I am utilizing my high dis-tractability to write about this or else I will then overthink about it and it will consume me all day until I get it out.  So here goes…this is what has been on my mind and in my heart creating me to grief since yesterday.

My youngest son wanted to play ice hockey this year. It is his first time and we had player evaluations yesterday. My oldest son’s coach from last year son was in the same evaluation group. This made my youngest son happy to sort of know a couple boys on the ice. We were looking forward to the usual casual catching up about summers etc….

However, when the Mr. S and his family walked in, I noticed the gait, constricted body movement,  grimace of pain and slight facial difference. I said “it looks like you are in pain…did you hurt yourself?” Mr. S responded “I lost a battle with a mosquito.”

All I could think was Whaaaattttttt….the……F. This is a load of crap. He is so young to be hit so bad. He is a good guy…his family is good people. Why can’t this shit happen to bad people like the asshole who stole a truck last week, caused two different high speed accidents in two different intersections and takes an innocent 18 year old’s life; then decides he wants to try to take the Police Officer’s gun in the hospital. Those are the assholes that deserve this shit not a person who works, volunteers his time and is decent. I always shake my head as to why this happens.

So apparently Mr. S is one of three people who contracted West Nile this year in Alberta. And of the three “fortunate” people who were bit by the special mosquitoes, he of course he drew the lucky wild card and was hit extremely hard with both severe physical and neurological effects.  Everyone is hopeful that the effects are temporary and not long lasting or permanent. I know I am hoping there is not long term effects. But when anything affects the central nervous system you never know what will happen. I know neurological re-wiring does happen and continues to happen with me but it is a very slow and I admit frustrating process.

images (22)I think it hits too close to home and I know the enormous amount of grief, guilt and loss person that is happening to Mr. S. I still don’t understand the family perspective entirely. But I can see the pain, sadness, uncertainty, trying to hold it together without breaking down and trying to be positive in Mrs. S eyes. I can see that the kids will grieve, be angry at times and frustrated, but the love will always be there. I see the fear, uncertainty and the ominous overbearing unknowing that lay ahead. I see the hope for continued recovery.

images (3)I also wonder if they are provided with all the resources the community has. I know we weren’t. We were not giving all the other stuff other than prescriptions, occupational or physical therapy. There is more out there but information seems to always get left behind.

  1. Get into a chronic pain management clinic rather than just Neuro or GP
  2. Occupational therapy runs out…Brain Injury Clinic can help with memory, distraction, daily activities with both an one on one sessions at BIRS and workers who can come into your home.
  3.  Mental Health in Provincial Building has people you can talk to. By yourself, couple, kids and family sessions available. This is a big stressor event and we are never taught how to hand it. Everyone assumes we can “Just Deal”. When you lose your identity quickly depression and anxiety crop up and almost go hand and hand.
  4. Medicine Hat Hospital Recreation programs are amazing and help you explore new or adapted leisure and recreations options. They have great programs such as walking, art, and others but I forget what.
  5. The Healthy Living program that is run in a building near the hospital is a great program. It was a safe place to work on building coordination, strength, and fitness.
  6. The YMCA program has an adapted fitness coordinator
  7. Community Futures Disability Entrepreneurship Program for those who are finding new career directions in life.
  8. MH Adaptive Sport is here in Med Hat with amazing people. It is for people of all abilities not just wheelchairs which I thought.images (8)

That is all I can think of for now but I am sure I have missed some very important groups that I have used and continue to use.

But one of the biggest things that have made a positive impact in my life has and is laughter.  Humour and joking is one way to break the ice with those who are uncomfortable when they see you for first time in a while, as well as with family on a daily basis. Humour and laughter just naturally cycled in being positivity in our lives. From that it spurred gratitude and mindfulness…of course I am continually working on the the mindfulness.  But as a dear friend of mine who is a two time cancer survivor and now officially conquered the big C always says “Any day I am turfside up is a great day” This so true for all of us as we take the crazy journey through life. We all often get wrapped up in the fast pace and stress of getting it all done we never really take a look around to appreciate the simple things.

images (2)I have always hated mosquitoes, black flies, deer flies and horse flies especially when working in a black spruce stand where you are basically a free diner with a neon sign that says open for business…free blood. You have to walk around looking like an alien in a bug suit because Deet is just an appetizer for those hunger little buggers. So I had to look up what West Nile was again because it has been a while and my mind of course is a sieve. So West Nile is a mosquito borne disease that usually doesn’t cause and symptoms or some very mild flu-like symptoms. More information can be found here. But the virus can spread to your Central Nervous System and create long-term havoc. There are aggressive treatments but there are still no stats on recovery rates which really sucks. Prevention is wearing bug spray and screens…limited which is even more suckier. I hate wearing bug spray and screens are only as effective as the amount of doors opening and closing or how many cat claw holes you have. I know we can not live in a bubble but really it just not enough.

Well thanks for letting me ramble with the keyboard. Hope everyone has a wonderful day! Remember take time to slow down, breath, feel the breeze and sun on your face and cre8te something for you!

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4 Year Anniversary

On September 4, 2016 I celebrated my fourth anniversay of my brain surgery. I thought about writing that day but I couldn’t bring myself to write. 

There have been some amazing hurtles that I have overcome in the last four years. I have become a stronger, wiser person. My brain continues to heal as I push myself. Life have become liveable and enjoyable again now that we have found suitable meds. I have overcome on the other side of some very dark questionable times as well. I held out and did not quit or give up. I have enough awareness now to be blown away. I know in my head what I have accomplished, but so many people do not because having a disability that is not visible leads to many assumptions.

I still have my sketchy quirks to work on. I notice them now more than ever. For example, my sense of time is often out and I still have not found a good calendar program that has a great nag alarm for my android phone. I still think I can remember a lot more than what I can so I decide not to put items in my calendar and of course I forget. I often forget what I promise to do…mmmm three weeks of saying I will put the boys phones up for sale and I still haven’t done it. I remember, then start and get distracted and then forget until  I am reminded. I have a hard time with conversations still. I will get nervous and keep talking and talking and talking. I often forget the clues that the conversation is over. I still have a hard time with ending a conversation. I am not too sure if the person has ended the conversation or how to end without being rude or too abrupt.

My organizational skills of planning and connecting from a to b to c to d is still a work in progress. I am not walking in a circle in my room trying to figure out what I need to do first but I will go from basement to upstairs to get one specific thing and in that two sets of stairs, I will forget what that item was. I will look around and grab something, walk back down stairs  and start working on what I was doing again until I remember what I wanted from up stairs. The process then repeats itself numerous times  or days. So sometimes getting things done is painful.

I tend to hyper-focus on new things and block out everything…like kids, meals, laundry. I bought a cricut which has been taking up all my time. I am loving the fact that I am suing Adobe Illustrator, manipulating graphics and fonts to create items to sell. I am looking forward to developing my crafty hobbies into a small biz. I am even looking into furthering my education. I am looking at my art therapy post diploma rather than recreation therapy certificate. The post grad diploma is a step forward rather than backwards with a general certificate where they want you to take their technical communications course even though I could probably teach it. How to write an email, proposal letter, make a brochure, resume….yawn. No challenge there. The only problem is to pay for my course. I have no idea what is available out there for resources to help pay.

So many steps and mountains climbed. A few more to climb but it all seems achievable now. Here is to how great and adaptable humans are. How strong we can be and how we can continue to learn on a daily basis. I am truly grateful! I am truly grateful to have been faced with all of this. If I hadn’t been challenged, I would not have grown so much. I look forward to tomorrow, the next day and to see how fare more I will come in the future. 


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How many layers of an Onion

A long time ago in a blog far far away, I wrote about the cliche of how a TBI/ABI compares to an onion in my recovery.

Well now I am wondering just how many onions are there in this journey? Definitely more than one, two…three or a whole sack? Can someone tell me? I would really like to know.

I mean I am definitely way more cognitively aware this year, even my memory is remembering weird stuff but forgetting the easy stuff. I have been trying to cut down on the naps and pushing through with the aid of my sleeping pills at night again.

I successfully handled my son’s first hockey tournament, thank goodness for hubby to help get my son ready, ear plugs, across arena seating. I even enjoyed watching the games. I even did 50-50 sales. It took me a bit with adding and splitting funds as I had to re-count over six times but I did it!!!

I made it through the feelings of anxiety and overstimulation by breathing and sleeping. I felt so exhausted by Sunday, that I exclaimed that it was weird that Wy had energy and I was sapped when you would think that the person playing on the ice (Wy) would be the tired one. I now can work with the fish trying to go upstream type of visual & feeling in a public situation. I still have a hard time trying to watch hockey via netting; it is very distracting and gives me a headache instantly.

A really big accomplishment for me was not shoving a horn up a guys butt. We were sitting on the other side of ice away from stands to avoid excess noise and visual distractions. I had ear plugs in and of course dude comes and decides to watch the game where we were. OMG. I was so close to snapping, but I didn’t. I acted like an adult but in my head horn guy didn’t fair so well. Especially since the other team scored 12 goals and I had to endure that excessive horn blowing for all 12 goals and then some added horn blowing as well.

So many positives this year already but then when I have accomplished a goal of living, another little thing decides to become a challenge. I am not too sure if it is because I was focussing on issues that these ones have now become important to me. I have been to the doctor three times, have had blood tests once. I had a form for other blood tests, but lost it. So the good news is that I do not have diabetes but now we are thinking the my pituitary or hypothalamus may be acting up with hormone and/or body regulation. With that I really do not know what that means just yet or what direction we will be going. I guess this can happen right away to a person with a TBI, the next day or even years after the initial injury.

So here’s hoping to a sale on onions in the produce department because I may have a whole sack to peel layer by layer
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2015 Theme was being grateful and blessed

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2015 has been over all a great year with some brain recovery strides that were noticeable. Two events really stick out the most to me. Okay I must admit, they are the only two that I can remember. Sometimes having memory issues are a blessing.

The first big stride for 2015 includes finally finding a med combo to ease the 24/7 migraine pain. I am truly grateful to have the migraine pain under control. Our bodies and minds are amazing on how they adapt to situations like 24/7 chronic out of control pain. On the other hand, once that pain is gone it is mind-blowing on how quickly your mind and body forgets how to deal with the pain too as I recently had nine days of constant migraine. Let’s see how can I explain what the pain is like….something like being hit with the worst flu you have every had and still expected to function with work, family, and social activities. I don’t just mean slight body aches…it would be full body aches, head fullness, pain, nausea, slow thinking, slow moving, light and smell sensitivity. The full meal deal and you can not escape it so being resilient beings that humans are, you adapt to it. You minimize you life to the bare essentials and spend the rest of the time recovering to be able to fulfill the next task on the daily living.

The second was having my neuropsych assessment done. This has now put me on a more realistic course for re-entering the land of being a more productive person. This has re-directed my thinking. I have begun to look at my likes, dislikes, abilities, adaptions needed and have some viable options that are now presenting themselves. I still need to re-learn some software programs and do some more soul searching and viability of what my ideas are.

I am truly looking forward to what 2016 holds for me. The “sweet 16” year already feels like it will be great. Deep down I know it will be amazing, prosperous and know that what bumps happen will be easily overcome. I am wishing you all a wonderful 2016 and hope you all feel as positive about the new year as I do. I wish everyone mainly forward motion with 2016.


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Volunteering the Next Step

I hope to take big steps in my life for 2016. I am wanting to volunteer at the hospital to help with the recreation department. I know it will be portering and just helping out, but at least I will be able to see what the job entails and how I react in a hospital situation.

I am saying that I can only volunteer five hours max a week and those five hours can not be done in one day. So I am thinking two days a week for 2.5 hours. I know I can handle that…or at least I hope that I can handle that and maintain doing it for a period of time.

I am so excited…..BUT! I had to fill out an online volunteer application. This weirded me out. For example, it asked about me. Now what do I say there…I had no clue. I am human, female, breathing, alive but a little kooky and broken at the same time. So I scrolled down to the next question. Work experience.

Easy Peasy! I listed off that I worked in the environmental industry. Did contract management ranging from tree planting, silviculture, bridge and road engineering. My largest project was 20 million road to help get approved, built and inspected. I worked in compliance and enforcement where we inspected activiities and tried to work out problems without resorting to enforcement. However, I have and written crown council reports and investigation reports. I worked as a website coordinator for a government organization and had a budget for 120,000 for one website and 40,000 for another website. I took photos, worked with film crews and interviewed people. I also taught at MHC for one semester before my surgery as I experienced hydro induced dementia like stuff. (I still feel guilty for not being a good instructor…showing same video like three times) I loved my work. Work was my life that is the green in me coming out. I am a Green/Orange mix with True Colours.

However, after I wrote all that I was like wow…impressive but I am no longer that person. I can’t even pretend to fake who that person was. Although it never looked like I was organized, I was. I was able to problem solve and think on the fly. I could remember legislation and understand it when I read it. I could easily navigate, read maps, GPS, drive long distances, work long long hours and get up early and do it again. I supervised fire fighting crews and even been on nine wildfires as a sector leader. I could remember regular and scientific names of plants, shrubs, trees, soils, rocks etc… I was able to stand up for myself and hold my professional standards & practices even if it meant pissing people off. I was good at that . I would frustrate the bejesus out of contractors and companies because I would take any shit for their short cuts. I was a fierce one and passionate to boot!

Then it asked for education and awards. So I fill out scholarships,, awards, and my degree, diploma and certificates that i have earned. So now I know the meaning of looking good on paper and really sucking in real life. You know the potential hire that had a great resume and interviewed well but when they got into the job, they just plained sucked and you know exaggerated the truth…god I look like one of those people. How embarassing except I am not lying.

I am at a loss. How do I represent myself now? I have no clue. It almost feels like I am lying when I put down my work experience and education because it seems like so long ago. I struggle with so many things that used to come to me instantaneously and now requires time to think about thinks, process, work out, organize steps etc….

When the person interviews me for volunteering, I am really not too sure what to say. I really no idea how I will perform, if I will make it to every volunteer day or anything. It is like a blank slate in my head. I have nothing to go on.

But I need to go through this; it is the next step in my recovery to get back to the “real” world. I will figure it out and find out what the new me can do successfully at this time and find small goals to work for in the future. It is just today I once again realized the truth in what the Docs saying a seven year recovery time. I am almost half way where.

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Look’n Good

images (5)I saw my very good friend today and she said that I look tired but very good. I had to agree with her. I am looking but feeling exhausted. I am so dragging, headpressure and pain. Not enough to get me completely out of the game of life but enough that I know it is there. This feeling is like an annoying hangover which would be okay if I had earned it from the night before.  Nope just get the feeling. Lucky me.

Last Monday, I had my neuropsych assessment. This is the second one I have had. The first was when I was inpatient rehab when in Unit 58.  It started at 9am and went until 12:15ish. I was exausted and felt sick to my stomach after. It was an interesting series of tests. I had to laugh at the peg test and the grip test. Oh yeah…lacking coordination and strength on the right side…it was quite amusing as I was doing it. I like the block test where I had to do patterns. The attention and memory tests were sucky but I plodded through everything.

downloadI then went to cafeteria to get lunch. It was so busy that I only sat there a few minutes and decided to go check in to sit in waiting room where it is usually quiet since I had an appt. with my Physiatrist for 1:30pm.

I check in; walk down the hallway where the waiting room nook was empty…score!!! I settled in and tried to eat my sandwich but I still felt sick to my stomach so I stopped. I was sitting there with eyes closed, relaxing in the relative quiet of a busy hospital when a person comes down and he is loud. He is another outpatient like myself. However, noise is not an issue for him but being loud, obnoxious were some highlight characters he exibited. Then he said he was there for his anger…while stating that the police are  corrupt and he got his injury from police when trying to arrest him. OMG…I think that I am going to lose it and police might come arrest me becuase he will not shut up; I am tired; feeling like shit and trying to really be polite. I do this for forty minutes. Finally I get up to go to the washroom and a young intern doctor motions to me as I come out that the escape route is to the left. I explained that I need to wait and the look of pity was did not go unnoticed. Then he gets called out…peace & quiet again. I shut my eyes and sleep again.

When it is my turn to go in, we talk about how I am doing. I tell her that there is no way I think I can be a sucessful counsellor, I don’t think I could really listen to people all day. We check go over meds and then do the Botox. Chris was in room with me by then and it is his first time waching the process. I guess when it goes in, the skin all inflates and there is a big bubble. The needles never seem to go quick enough. I even yelled out once or twice. 20151120_094254I even ended up with bruises on my scalp & forhead this time.  So the remainder of last week and still this week has been a little uncomftable.

The Psych called today to give me a rundown on my results. He said that I had improved in all categories but memory went down. He said that if I want to go back to school or re-train, that would be best at visual and hands on. That is good news at least. Options. I don’t think a Masters is in my future anymore, but I have a couple other ideas in the fire right now.

The memory going down is a concern! I have been experiencing other potential hydro issues but have been ignoring them for the last couple months but today I ended up sending email to Dr. to see if we can get a head scan. If there is another issue and I need to get an ETV again, I would rather do it sooner than later.  Below is a list of common symptoms when your hydrocephalus is acting up or things are not flowing right:

Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF. Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. taken from.Hydrocephalus Fact Sheet