Howdy Hydrocephalus

Understanding my unique gyroscope


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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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Bring TBI’ers, Elderly & students together

I realize that I am no doctor, researcher, therapist or anything in the medical field. Because of my luck, I have been exposed to quite a bit of resources in the medical and rehabilitation field that I have some insight that may help people with aphasia and brain injuries.

What got me thinking was the news story of a Dutch retirement home that give students free rent in exchange with socializing with residents.  I think that retirement homes isolate people with ageing and chronic illnesses that instead of creating a resilient environment it is an isolated and forgotten place.

When I was working as a government employee, I was so shocked to see that there was no job transition/mentoring in place, especially with highly skilled employees that were almost ready to retire. I watched talented people retire with their wealth of knowledge not passed on. A new person gets in the position and basically starts over. There is much overlap and redundancy and re-inventing the wheel. We have lost a generation or two of information transfer due to this. It is a shame! Then we are experiencing the baby boomers retire at 65 healthy, strong and going stir crazy because they are now perceived to be “worthless or old or redundant” pieces of society. That is hurtful. I am so grateful that the 2015 movie Intern was released. It is starting to mainstream the breaking down of barriers and re-starting generational information transfer.

I then also saw first hand how isolating health obstacles can be. When I was doing my speech therapy once a week and attending a small speech group another day a week I felt I was not making progress in my recovery. I went into my son’s class and read to the class…stutters, stammers and all. The kids didn’t notice at all and thought it was apart of the story being read. I felt great after that. I asked if they needed help with reading and so I spend once a week for 30-45 minutes leading a reading group with five kindergarten students. It was here where my speech, thinking improved the most. I also felt like I was apart of a community and not isolated. Even though I attended a group with 6 other aphasia people and two workers before, it was more of a health treatment type of feeling. The feeling of going to an appointment for dentist or something like that. It was not a community feel, but a medical feel to it.

I really think that bringing TBI’ers, Elderly and students together in a learning environment would benefit everyone. Even if it is students going into the retirement homes to collect stories, help with crafts, reading, exercise, board games or just socializing can be beneficial too! I even think that having a retirement home/day care would be beneficial too. Daily interaction with kids…what couldn’t get better than that. If there was mentors brought into school and used to help kids with one on one stuff or projects.

So my hope is that all of us tossed to the side people find their community and become less isolated. Being able to think, do physical activities, work on your quirks in a “normal situation” can help recovery. It helped mine. I was practicing my tactics in a real world situation instead of an office.

This type of working agreement could be beneficial to two goverment areas medical and education. There may be some cost savings in long term health care and in education with the use of volunteers.

Who knows…but I have positive thoughts that it could work.


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Sometimes you just have to let go

The letting go and re-birth I think happens many times over at least for me. I think it is my awareness that flitters in and out, as well as my memory that makes it occure.

Bitter Gurl's Wurld

I’ve spent the last two years learning to be a new me. She’s not necessarily the me I want to be, but it has to be done. Brain injury causes a sort of rebirth. And with any rebirth come many changes. This is particularly true in relationships.

I’ve been thinking a lot about the people in my life, and those who are no longer in my life either due to natural loss or through cutting ties. It is, after all, the time of year when you think of your loved ones.

I’ve never been a confrontational person – always friend to everyone – always wanting to please and gain approval. My grandfather used to say I had a “cuore fessa”, which is a very crude way of saying I am a softie.

But on January 22nd, 2014, something snapped. I kept trying to maintain relationships with people, but I found…

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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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Out of the Fog

Yesterday morning I woke up & felted normal so I lived my life as I was normal only to pay for it today.

I know….I know everyone says to take it slow when you feel well but I have no idea how one could hold back all that energy that is not shrouded in pain. I felt light, had energy, ate and was not in pain.

So what did I do yesterday to call for a molasses recovery day. Did I climb mountains, run a race, work on the computer for a long period of time, drive long distances or do some crazy wild exciting stuff? Nope nothing really exciting at all. Just your usual household type stuff. I loaded some stuff into van and dropped off at donation bins. Hit the post office and then I cruised Value Village for a few great xmas finds. I strung one strange of Christmas lights on our front balcony. A friend dropped by for 15 minutes. I had to run to staples to get some photos laser copied for an art project and then I booted to Canadian Tire to grab a frying pan. Back in the car by 3:00 pm to get kids from school. Home to make dinner. After dinner, I then started on image transferring about eight canvasses. Somewhere in the mix a load of laundry was done and folded by Chris. Kids were also bathed thanks to Chris as I was in the basement doing art.

I forgot to take my meds until the kids were tucked in. I needed a good nights rest so I took my sleeping pill, antihistemine for very raw itchy skin and nabilone and fell asleep very quickly.

So after one great energy day or a regular day in the life of a normal person, I was in slow molasses recovery mode. I felt so off this morning that I dropped the kids off went home and crashed until 11:30 am when I was so rudely awakened by Scruffy barking. I made it downstairs and actually turned on the TV and tuned into HGTV. I haven’t watched daytime TV in a while. After drinking water and having a bite to eat, I actually went into pool and swam.

I almost exercised for 15 minute and I was pooped, Had a shower and picked up kids. So many kind remarks about how well I looked. If only knew that I had slept most the day to be able to look that good! But it was nice to hear that people are seeing that my hair is looking way better!


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Irritated

I supposedly had a massive migraine with aura that sent me to hospital to have IV to make me feel better. That happened Tuesday night, It was not like any other migraines that I have had in the past. I usually get aura such as visual zig zags, dots or lightning. I also get wavy vision. I also get a bit numb too. However, what happened on Tuesday reminds me of December 2011 when I dropped to the ground with a sharp pain. I had the same sharp pain at the top of my right side of head and then my neck hurt really bad. I laid down in bed and my vision went really funny. I closed my eyes and held my head hard to counteract the pain.

After an hour of breathing and working through the pain I got up to go to the bathroom and my right side was non existent. I walked and went into the wall. I couldn’t keep my balance, stand. My right side felt weak and very tingly.

It is now friday evening and I am still feeling like crud. My head is still kind of not well; my stomach is off and I am feeling frustrated.

It is Friday night and I am in a hotel room with the three boys (2 kidlets & hubby) who are loud, hitting each other, wrestling with the TV on. I spent 30 minutes trying to get a post for shout out saturday done and then had to spend another 30 minutes figuring out why apps were not downloading in our family account. As the noise level and interruptions kept increasing my level of irritation and ready to snap rose significantly. The words “oh for fuck sake…can’t you all just shut the fuck up” almost slipped out. But what ever little filter held and I survived.

Then I read some dumb ass article about how people who post motivational quotes are intellectually inferior. Wow…scientific research at its best. What about faking it until you make it…there is some sort of counselling jargon about changing from negative to positive mindset. Sometimes it takes many motivational words until things become seen in a different light.

I think bed and a knowout pill are calling my name. Hopefully tomorrow, I am filled with energy and smiles as right now I am thinking an ice pick lobotomy may just be the answer!