Howdy Hydrocephalus

Understanding my unique gyroscope


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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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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


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I Survived Spring Break


On Easter Sunday, my friend, her two children, me and my two kids took off to Cypress Hills Resort at Cypress Hills Interprovincial park Saskatchewan side. We rented a three bedroom cabin for approximately $130/night. But even better was the buy two nights and get the third free.  Sweet! great trip for us budget minded moms. First off, it was the longest I had driven and I was a little nervous. It was not only the nap before leaving; coffee and sugar that made the ride smooth, but also the road conditions. In Medicine Hat we woke up to to an inch or two of snow, but in the Hills there was a record snow fall of 1.5 feet of snow.

Before leaving, I quickly packed winter gear and sleds. Yup I am writing about my journey with a brain injury and all my photos show sledding without helmets. Let’s just say that the brain injury got in the way and I forgot some important stuff. No way was I going to get beat up by four kids so they went sledding on our third and fourth days there. There first two were very chilly but fun. The snow was super soft, melting quickly and we were the only people there sledding.

It was a great time, we played card games, charades, drew, read, and the kids played minecraft on their tablets. Us mommies on mommy time drank copious amounts of wine. Yes I have a brain injury, but I am allowed to splurge on negative brain influencing behaviours. I re-discovered white wine. It has been forever since I drank white wine.

We went on lots of walks as a group. The kids played outside without us. I had my two hour nap every day! We had a great time, but on our fourth day, I thought I packed up all my stuff in the vehicle, I forgot food in the fridge and cupboard. Oops! Then instead of driving home right away, I went on the hunt for moose to take pictures. Got a couple shots of deer but that moose always evades me until summer.

The drive home was bad. It took everything I got to keep my attention on the road. I was exhausted but knew that Chris was at home off work for the next six days so I would be able to rest up and recover. However, I was wrong about the recovery time. Chris’ mom was having urgent health issues that required him to fly to Newfoundland right away. So he left Thursday. The boys had a sleep over on Thursday night; Friday I took the boys to the skatepark. Saturday & Sunday I really do not remember much except Chris was back Sunday night exhausted 13,000km in a few days was a lot. Monday I don’t remember much. Tuesday, I went to my son’s grade three class and did a presentation on photography composition. Then they all got to go around and take photos with their Ipads. I hit the wall after that. My right side was all tingly, numb with imaginary fire ants marching everywhere. My right eye and perception started acting funny. My usual head pressure/pain intensified with the feeling of a kitchen butcher knife at my surgery site and an ice pick through my right eye. The pain is intense that you no longer feel it but just feel sick to your stomach.

It is now Thursday and I am feeling a tad better, but not really. I have been getting up in the morning getting kids to school then going back to bed. I have been using my oils, but nothing else. I need to start up my vitamins again. I just got out of bed at 1:15 feeling like I should write, but now I am going to crawl back to bed for one more hour.

I would not give up my spring break for anything. I had fun. I pushed my TBI boundaries and Yes I will be most likely paying the price for the next week; I am glad I did.


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New Me…old me…who – TBI & the great identity crisis.

I am fortunate to be a part of a group brain injury wellness program. I am glad there is finally one in the community but I am a little saddened that it is only seven weeks long. It is weird that there is such a short time limit on it when brain injury recovery is such a turtle of a beast and recovery moves slowly.

There was a lecture on personality changes after brain injury. I think my overall personality is much the same, but there are some noticeable things that did change. I do still reflect, but no longer focus on who the old me is. I am still however trying to get used to the new me. The upside is that I get to start over and really I am only three years into the new me so it really hasn’t been to long for me to adapt. However, it is all not rainbows and happy parties, nor is it a pity party either. It is just plain weird and that’s it. It is uncharted territory as I don’t know if this is how I will be forever, or will neuroplasitiy take over and re-route neural activity over time.

Somethings that I miss about the old me are:
The energy I had,
always on the go & doing something,
going out and enjoying it,
my quick wit and sense of humour,
enjoying people,
being easy going,
love to have fun,
and playing with my kids.

The new me tends to:
Get frustrated easy,
embarassed and humiliated (less now, but I did forget how to tie my shoes, now more so if I fall),
go from patient to snapping if done too much and are overwhelmed,
stares off when can’t keep up with conversation or distracted,
don’t show much enthusiasm,
will not think things through & impulse control,
lack a sense of humour – don’t get jokes or sarcasm,
slower uptake on significance of conversation,
awareness of limitations,
seem serious because I am concentrating so hard,
feel that everything I do is for rehab purposes and forget what fun is,
and have a hard time playing with my kids.

Today, I watched the Lego Movie for what seemed like the first time. Although I know that the kids have seen it so many times that I have lost count. I don’t know if I zoned, missed legitimately, or slept through all the other times, but this time I thought the movie was funny. After the boys wanted to play Lego. I didn’t really want to but did. We build a couple things and then the boys got involved in another movie.

I continue to try to re-learn coping skills, acceptance and re-adjustment. I only hope that we as a family is muddling our way through it in a decent way.

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After Brain Injury: The Dark side of personality change part one

After Brain injury: The dark side of personality change part 2

Helping Children Cope with a brain injured family member


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Two Years Post Surgery

My first year post surgery was a blur with more valleys than peaks. The revovery more erradic than steady. It was filled with frustration and limitations than major successes. However the first year was not all doom and gloom. The ETV stuck and with only two glitches was free flowing great.
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My physiatrist (Rehabilitation Doctor) said that most recovery happens within the first year of recovery and then can happen slowly up to seven or more years post surgery. Although my first year did have upward progrress, the recovery was painfullly slow and somewhat muddled. However, my second year rocked the house. All that speech therapy paid off. My processing speed picked up allowing me to understand and respond quicker. This in turn with all the speech therapy contained my stutter. All those practiced speech techniques finally come more easily so the beast barely shows its head unless I am sick or very exhausted.very tired.

Most of my ice pick, migraines have been alliviated with the use of medication and Botox.

My right side is still weak, but getting stronger with my swimming. I let go doing my old exercises and have taken up swimming. I enjoy swimming in the swim spa because it is warm and quieter than a pool.

The new prescription Lamotrigine has done wonders for fatigue and clear headedness. I feel smart again and less like trying to walk through mud. Too bad it took so long to figure out. I swear I have been on over twenty different type of prescriptions.

My hearing and smell are still sensitive but not hair trigger sensitive. I was able to spend 1.5 hours in Cross Iron Mills (until it got overwhelming busy & noisy). Once my system gets overloaded, I begin to shut down. My right side goes numb, I get disoorientated and being to fall apart a the seams.

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I went to mental health counselling to work out all the disappointment and anger. i have let in gratitude, play and adventure into my life. I still am an over achiever and miss my old high energy self, but i do not allow the past to get in the way of my future. I am responsible for my own happiness and positive changes in my life. It is my responsiblility to not just exist, but to live my life and make a positive impact in the world around me.

I am now responsible for being very proactive in my own health care. I ask lots of questions, have Chris help me and suggest things to the doctor. I do not just take the first answer. I ask for explanations and push. I am going to be around for a long time and want to be fit and healthy not ailing.

I am feeling stronger mentally and physically this year. As always I am not like the norm and I will most likely see more improvement beyond what the docs had stated. To move ahead
My two year anniversary was like T.S. Eliot’s The Hollow Men Where it came and went “Not with a bang but a whimper”.

I litterally mean whimper and moan of fierce pain, flu like symptoms that had me go to walk in clinic on my two year anniversary. Blood & urine tests done and waiting for results when all went of the rails sending me to emergengy two days after my anniversary I was admitted to Medicine Hat Hospital with Stevens-Johnson Syndrom..

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Stop & Go

having funIt has been quite the journey since February 2013. All I can say is that my CSF flow is good. I do not have a tumor and I didn’t have a stroke. The low blood pressure & decline in cognitive functioning was most likely from yet another bad medicine combo. The going blind in right eye and losing my left arm can only be chalked up to what the docs call “brain incident”. All they can tell me is that something happened around my surgery site but no one can give me an answer because they don’t know. I can guess and say that maybe the hole in the bottom of my third ventricle got blocked for a small time again and then resolved itself when the pressure got greater – but who knows.

It took me a long time until mid-May to recover from this little “brain incident” I had no energy and being fatigued was an understatement; had little strength and to date I feel that my cognitive skills have declined. It was really scary and I couldn’t understand why the decline. It took everything for me to be able to just get dinner on the table get laundry done (not folded or put away). I tried to also look after the boys; I was there in the house all the time but mostly in bed. The boys kept themselves snacked up with juice boxes, granola bars and dry cereal. They also kept themselves occupied with my phone and tablet or television. The boys call me a “star napper”. I couldn’t really nap because when I closed my eyes all I see was flicker and my eyelids or eyes felt like they were moving uncontrollably. I would eventually pass out but that would only be for a bit. I mostly just lay there with my eyes closed. Yup I know that there will be critics out there horrified that I let my kids “pseudo” fend for themselves but I was doing the best that I could at the time. My parents came to help out and that was a great thing because they kids were kept occupied.

I stopped almost all computer stuff except checking Facebook or twitter. I barely wrote or took photos. My headaches and head pressure were out of control. I was feeling sick to my stomach all the time and when I looked through papers or computer pain through my right eye to head was harsh.

Mostly the last few months have been a blur. I have a hard time remembering what it was like. I have been to and from Calgary many times. I have had MRIs & CT scans. I almost had a lumber puncture thing that last a few days. That still may be in the works but who knows. I have been to the headache neurologist and we have re-worked medicine and have tirated the dose really slowly and I seem to be doing better.

I finally had my hair cut since last August. The area around my surgery site is sensitive and my hair was falling out like crazy. I have had issues with being cold all the time or getting cold easy and staying cold. So much that my feet go purple and my hands red.

My head pressure is still there and the pain is getting better. I had a telephone appointment with my Physiatrist and she was great. She explained that the surgery was a big deal to the head and the brain is like a muscle. That you have to take things slowly. Slowly is a new word for me that I have been trying to learn. I am a little “slow” at picking it up. It is not okay to go for a long walk with the new dog (Yoshi) but only to go to alley and back. After Doctor orders, I am retrying to be slow.Only little bits of computer a day because the screen bugs me badly and tires me out really quickly. This has taken me four days to write. However, I can not do everything slowly. I still do too much and pay for it. .Wallking a trail
For example we went camping and I had a great time but it took four days after coming home to feel okay. But I would rather pay for it on the back-end to bike and walk with the kids – to feel like a normal person & mother; to laugh and have fun!

I have also come to the conclusion that selling my current camera system and dismantling my photo studio is a positive thing. I can buy a smaller rangefinder like camera that is lighter and easier to handle. We are getting someone to come in to help clean the house so it frees up some energy from me and takes the responsibility off Chris. We are trying to get rid of stuff and purge so I know where everything is. I think I will need labels to help remember tho! My parents helped to purchase the playset in the yard so the kids can play at home.

I have always said that I like to “take the road less travelled” is so true. Let me have days that make me feel that I am walking on a side slope or my balance is so off I need to hang on to something to put my shoe on or I sleep away the hours during the day to spend the evening up with family is all okay.


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Gas Guzzler

January has been literarlly a pharmaceutical blur – yes we are still trying to get meds right to control the 24hr headaches. I tried to write and began a couple posts but then of course forgot about them and moved on with laundry or cleaning the bathroom until today where I promised myself I would get something down electronically before I completely forget about this month. I was sprung from Unit 58 on January 10th and officially an inpatient graduate. I was happy to leave because I know that there so many people waiting to participate in the program. I am referred out for Occupational Therapy to help with Executive functions and Speech Therapy to help keep my stutter under control It has been an interesting few weeks re-adjusting to life on the outside with my newfound realization of my brain injury and all the quirks that go along with it.

What I have found out in the last little while is that when the TV is going; three adults talking; the kids playing; dryer spinning; fan whirring; chairs scraping; creaking floors; trucks starting outside; dog shuffling – I still hear it all – it is all noise all at once that is hard to filter. I wrote a post called super powers. Yup didn`t realize it was a part of my injured nogg`n. Because of this lack of filtering, I am distracted easy and not pay attention (sorry folks – the smile and nod thing doesn`t mean I actually “heard“ ya). When I am overloaded I do not realized that my tone of talking sound like I am irritated or angry sounding even when I don`t think I am. I do recognize body language but may be confused that your body language showed something different than what I said or intended to say but it may have come out wrong.

I am learning that the damn visual disturbances are still there. I thought they were gone because I didn`t leave the house for 1.5 weeks and other than right-sided fuzziness and popping words when reading, I thought it was all under control. Then went to Wy`s school. I know we like to think of all school-aged kids as stars but to see them walk by with star trailing is not so cool and a little disappointing.

I have learned that when I get too much going on, I may not be reading correctly or understanding what I am reading without knowing it thus the kids passport fiasco. Usually I am the one in the household who does all the filling out of forms and paperwork. So I filled out the passports; had Chris sign; waited forty minutes to hand them in only to find that I had filled them out incorrectly in many areas of the forms. I am and was so embarrassed. Prior to injury I was extremely anal about forms and filling them out correctly. Now I know that Chris needs to overlook and proof my forms. He just assumed like me they were filled out correctly.

I was handed some homework at the end of a speech session and looked at the forms and couldn`t understand what I had to do. My therapist explained what was needed. I smiled and nodded and went home. After resting at home, I looked at the homework again and thought it was somewhat easy. So I am somewhat there when I am rested and in a distraction free environment. Everyday I still feel very dumb compared to where I was before. I haven`t accepted that I am not as smart as what I once was – just yet – that will come with time especially as I learn strategies in re-defining my life. The fortunate thing is that my writing is relatively intact and I can communicate more freely via typing than any other way.

I also do not know how to set boundaries when doing things. I will go full bore at something and then pay the price with complete lack of functioning and fatigue for 24-48 hours. Everyone preaches “pace yourself“ but to me there that is a foreign idea and I can`t relate. I think I will be working on this. This falls into the same category as when I didn`t realize that anything was really wrong with me.

It hasn`t just be hard on me; it has been really painful for Chris and the kids as well. We all didn`t sign up for this but we are all trying to pave a new road and make it work. There have been a lot of misunderstandings, frustration, stress and unknown especially when we are trying to have a “normal“ family life. We are learning patience, understanding and forgiveness. The TBI guide or Alberta Initiative Brain Injury Guide are two good thing to help us all understand what is going on.

I like to think of brain healthy people as hybrid cars – where the fuel they use is energy efficient. It can run all your unconscious brain functions, physical functions, cognitive functions all at once without depleting in any of the main areas. It is a well-run machine that picks up speed quick and corners well. I, on the other hand, am a gas guzzler. I am not so efficient with my fuel and energy placement. It doesn’t matter if it is cognitive or physical, it all takes the same amount energy and the energy gets depleted quick. I am always needing to re-fuel up with rest or else I have my fourways on at the side of the highway waiting for a tow truck. I may not be quick to speed up and a little rough at cornering but at least I am still getting from A to B!

Here is a great video explaining abit about a mild TBI. It helps me explain how I am feeling.