Howdy Hydrocephalus

Understanding my unique gyroscope


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This is not how I want to think, but I’m going to say it anyway

This is a great blog to read. It is about a person who has experience numerous minor brain injuries over the years and writes about living with TBI. I have found the blog informative and somewhat reassuring that I will be able to work with my brain quirks. Small miracles for me are that I left the kitchen with the expresso maker on the stove and grilled cheese cooking and remembered to come back before anything was ruined. If I am at home resting with little stimulation, my brain works better, but as I am placed in a situation with more and more stimulation, I hit my wall quicker. I am hoping that the brain injury clinic will refer me to get some neuropsychological testing done. I really feel that I need it.

Broken Brain - Brilliant Mind

I have been feeling very down, these past few days. I know that I am over-tired, and that has a lot to do with it. But still… I feel down, and I don’t like it.

On the one hand, I know I am making really good progress with my job and my skills. I feel very positive and hopeful about my future.

But on the other hand, I am sad about how things have turned out with my present situation, and I am kind of mourning the passing of all the high hopes I had for the job I am trying to leave.

It’s really got very little to do with me, the way the job has changed. And the things I’ve been asked to do have been so overwhelmingly complex — for anyone — that anyone would have struggled the way I have been struggling. I know that now…

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Natural Adaptation

I did this image and descriptions after my follow up appointment when I was still in Calgary. I had Chris help with some of the details that I had forgotten.  It was awesome to see the before and after imagery that showed the CSF flow.  It blows my mind about how my body adapted because if my body didn’t compensate – who knows what!

No wonder I was a perfect candidate for an ETV surgery.

I had a busy weekend last week that took me until Wednesday to recover.  We went to Calgary.  When in Calgary it is super busy because we want to go places that we do not have.  There was a one hour trip in Ikea (all I could stand & kids play time only); swimming in the pool with two waterslides (noisy);  dinner out (that was maxing me out by the time we left there); value village (that was surprisingly packed); lunch the next morning and conversation with relatives; drive home where I passed out; then came home to a wonderful surprise party with a great bunch of friends.  I was completely blown away.  All this action with little down time fatigued me so bad that it was not until Thursday that I had energy.  I had lost track of days and thought thanksgiving hadn’t happened yet.  I had compeltely blanked on other things as well.  My brain didn’t like me doing all this activity.  I made a schedule of my new routine for my OT appointment on tuesday but I had forgot to put in any down time.  So this week has been no more than 30 minutes on the computer at a time; two naps/downtime rests a day.  I need to take breaks to let the brain heal.  I need to remember to do this.  I am finding it very difficult to do this with a 4 & 6 year old boys; a house to somewhat clean (never been a big housekeeper); get boys to their activities and school; endless laundry; grocery shopping; driving; and maybe a hobby like writing or photography.   I am torn because friends want to do activities and I don’t want to say no – I want to be like I was – endless energy and always go-go-go but that is not possible at the moment.   So this week around mid-Wednesday on has been a successful week – okay Saturday was a little crazy and I am feeling it this morning, but I am not doing much until a two hour play date this afternoon.  Heres to taking successful baby steps in letting  stuff slide.

 

 

 

 

 

 


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Giving Thanks

I know that I am a little late on doing a thankful post for Thanksgiving, but I belive in being grateful everyday rather than just once a year.  My son brought home a great picture of a turkey with words that his is grateful for.  He wrote down all the important stuff that his is thankful for such as health, family, our world, Medicine Hat, and chicken.

It has been almost two weeks since my dad left.  I am extremely grateful for him spending four weeks in Medicine Hat.  He totally disrupted his normal routine; missed his oldest grandson’s first touchdown and football games to come help us out.  My dad was indispensible by doing quick grocery shops, getting the boys to school and being my chauffeur by driving us every where, as well as keeping the boys occupied.

The most important thing that I am grateful for is the special bond that W & D have with their Papa.  The boys really only get to see their Nana and Papa two/three times a year so having four weeks of one on one time has created a lifetime of special memories for the boys. My dad spent countless hours playing, drawing, building Lego and just out with W & D.  My dad hardly took any time for himself to go for his daily walks or nap.  Instead he powered on even though he was tired and not used to the endless energy my two boys have.

There is no amount of money that I could ever pay for what the boys experienced.  They were so upset that Papa had to leave, but on the other hand the other two grandkids were so happy to see Papa again after a month of missing him too.

The first week after my dad was gone was like a roller coaster.  I was getting things done with my handy dandy lists, but then I would be do too much the one day and completely down for the count the next day.

This week has been better, as I am trying to limit the number of things of per day and remember to rest.  I am working on making a loose daily schedule to create a routine. I have done some research on brain injury and what I can do to be proactive to help my brain heal quicker.  Some things I read I understand, others’ I don’t understand.  I have great days and other days I complete forget.  We had two homestay student students over for dinner and I completely blanked two days later saying we did nothing that night – completely forgot.  I have been playing a Nintendo DS game brain academy before surgery and now I see an improvement.

Today I had my six week post operative follow up appointment at the Hydrocephalus Clinic at Foothills Hospital.  It was great to be so close to the only Hydrocephalus clinic in Canada.  Great to hear that they have completed thirty surgeries like mine this year alone in people with the same condition as me.  I am told I will not get my brain memory stuff will not get any worse.  The surgery fixed that.  I am told that my brain will need time to heal – “it is like an old man and doesn’t like change!” So I guess I gotta go with the flow and continue working on getting better.


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Hydrocephalus in Dogs

I was doing a bit of online research.  I am so glad I am a great researcher – I have always been. If I see something I like, I usually take a picture of it or put a note in my phone.  If I am surfing the internet I usually put a link in my favourites.  When I go through my notes, camera folder or my favourites directory I am often surprised with what I find.  I may not remember why or when I put it a link in but consider it like Christmas and opening a gift a wonderful surprise.

Back to doing a bit of online research.  I am always on the hunt to try to connect with other people with similar stories and I came across a couple of great articles about dogs getting hydrocephalus – who knew!  Kinda neat but kinda sad too because how many pet owners would be able to pay for a shunt.  Yup dogs can get shunts just like people.  Could you imagine a dog and it’s owner that both had hydrocephalus and shunts – kinda funny especially if they both are affected the same when weather changes.

Spring Hill Animal clinic wrote a great blog post a couple of days ago.

 

 


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On My Own

Yesterday my dad left to go back to Vancouver.  It was my first day on my own doing what I needed to get done.  I had to get the kids to their school and preschool and pick them up too.  I had to go to my OT appointment at the hospital.  I needed gas for the car.  Had to return a library book.  Return a matt and get bread.  Oh yeah and TKD too!  Doesn’t sound like much to a “normal” person does it. I know I used to do waaaaaaay more and then some with my energy.  Yesterday, my head hurt more as the day went along and I felt that I was slowing down.  It got hard to concntrate to people.

Well today I am paying for it and then some.  I had trouble focussing my vision.  I successfully dropped W off at school only to realize that when I looked at the announcement board that I had forgotten about hot lunch sheets and he would be so mad if I forgot about pizza lunch.  I was so lucky to have $5.00 in change in the car – melt down diverted – Phew!  I was a little unstead walking the stairs but hey that is what railings are for!  I made an executive decsion to just go home and sleep.  I slept for an hour as D watched a movie – yup relying on the big box as a babysitter – please don’t judge!  He  kept coming in and asking about what was in his wallet – nap cancelled! I am having a day where I need to rest and recover.  It is all apart of the process.

Yesterday I got an appointment notification for the rehabilitation brain injury clinic for Foothills Hospital in the mail for October 31.  I had to change the date because the kids have been such troopers that it would be such a rip off not to go trick or treating.   After getting this appointment notification, I did search for mild brain injuries.  I found this great story I Wamt My Brain Back.  It is a great read.  The person has had to face many more challenges than what I have had to so far, but I can relate to some of her stuggles.  Okay – I need to get off the computer as I am done – Cheers.


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Driving everyone…

Nope I am not driving everyone mad…or at least no one has said anything to date…or I just haven’t noticed, but instead I drove the car again.  Yay! Independence.  My dad leaves on Tuesday and I need to get everyone around town to school and activities so I am taking the plunge before my post surgery follow-up on October 19th.  It hurt my head the first time I drove to Redcliff, on Wednesday.  There is so much stimulation to take in and focus needed to not get distracted.  Today I drove to Costco and that was better because my head didn’t hurt as much.  I think I will be doing short drives for a bit. I know the brain is working hard when it hurts.

Beware warrior woman is on the loose and there is no stopping her.


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One List at a Time

Last week I had my first Occupational Therapy (OT) Appointment.  The person who I am assigned to asked me lots and lots of questions.  As soon I was done my session, I went to the main lobby of the hospital and fell asleep on the semi-circle couch while I waited for my ride.  When I got home, I wrote down on my phone the questions, so I could to go through in my head again – I really wasn’t confident if I answered truthfully.  For example, I was asked if I cooked by memory.  Yes of course I always do.  Yup but before surgery I was forgetting key ingredents in recipies that I have known since I was seven.  After surgery…what have I really cooked…I can’t remember.  Pretty easy stuff…put meat in slow cooker and leave it, frozen pizza, chicken nuggets (have to follow the directions on boxes).  I did realize that I forgot how to make gravy.  So I guess I will be using All Recipes or my favorite cookbooks (if I can find them) regularily now. My homework was to make a list of all the steps needed to get the kids to school on time without anyone helping.  So I made a list and the test run still had me missing stuff like getting the kids to brush their teeth and wash their faces.

This week I went in for my OT session and we went through the list again.  We broke it into two lists – things to do the night before and things to do in the morning.  Test run this morning went okay and we ended up getting everyone to school on time without forgetting anything with the help of my dad.  My downfall was that I was not prepared for the rain and in the process of trying to find a pair of jeans for me to put on, I became distracted and started taking out all my summer clothes to put away for the season.  Can you say slightly ADD – yup that is me at the moment and it all normal and will hopefully go away as the brain heals.  I have gotten an Iphone app called VoCal for my Iphone 4.  I love that it will give me a text reminder and then give me voice reminders every minute until I acknowledge the reminder.  This will help me a lot when I am on my own.

I am learning to not get frustrated with me and just accept that it will take time for my brain to heal itself.  In the meantime, I am relearning all the once unconscious steps that were in my life One List at at Time.