Howdy Hydrocephalus

Understanding my unique gyroscope


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Getting Kids Outta the House

Found unpublished from around October 2012

I received a comment on facebook from a dear friend where she wrote

We take a lot for granted. I recall when we were told to write instructions for a “simple task” and realized there were so many things going on….

It is true.  Here is my list

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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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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.


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RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!


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Two steps forward; One step back

Being a somewhat impatient person but hopeful and positive person, I was aiming for one of those recoveries without any issues; a straight line recovery without any steps or plateaus.  Last night I started to feel just off; my leg and vision felt weird.  Maybe, I had just pushed myself too hard.  Crap a lady in a walker beat me walking so I know I am not walking fast. Maybe I didn’t rest enough.  It feels like all I do is sleep and rest.  I had a cruddy sleep, very restless; some falling feelings paired with an upset stomach.  I awoke feeling  like shit.

I felt so awful that I didn’t get to see D go to his first day of preschool.  He is so easy-going that he went without a peep! Chris tried to take pictures in the classroom but instead hit my Iphone video instead and didn’t know it so there is a video of mass movement with voice but nothing of D. Chris, however, did get a good one of D walking from the car to the school with his backpack on.

During this time, I felt cold, felt nauseous and extremely tired so I was balled up on the couch sleeping.   I slept until almost 11:00am.  I then had a bit to eat – so far so good.  I want to go with Chris to pick up D so I do.  This wipes me out and when we get back to the house I sleep until 4:30.  I get up feeling okay, so I help W with his homework and get leftovers out of fridge for dinner.

I am now done once again and already in bed.  Accepting that today is not ideal is no problem and that tomorrow will be better is easy but I also must remember  that what I am experiencing could be a sudden ETV closure, but not to panic or over analysis any symptom because what I am feeling could just a viral infection due to all the kidlets being back to big petri dish (viral breeding ground) called school.   Anyways today definitely falls into the two steps forward and one step back type of day.  Grateful that this journey is teaching me so much about myself.  All is good and educational:)