My on going medical drama...

For the past several weeks I have been experienced some unusual side effects from radiation. According to the website, doctors and nursing staff side effects are extremely rare. I could expect to return to my regular daily activities within 48 hours - Hmmmm.

Considering only 1% of the general population have an AVM, even fewer have one in the left, posterior, frontal lobe of their brain. Even fewer still have had Gamma Knife to fix it; so how do they really know what the side effects will be??

First day post op I had three focal/partial seizures in my mouth and the most amazing technicolour light show.  One week post op I was losing sensation in my hands and feet and continued with the regular light shows.  I spoke my Neurosurgeon and reminded me to listen to my body and get lots of rest.  I listened and things were feeling better so I decided to go back to work.

In the past 5 weeks the focal seizures in mouth have increased.  It started once or twice a week and has now progressed to twice within an hour.  It is the oddest sensation.  At first it kind of feels like having freezing in your mouth. It twitches and tingles but it gets really scary when I can no longer talk.  Even more scary when I know what I want to say, write but the brain to mouth connection is gone completely.  Each seizure leaves me feeling exhausted.  Each one gets worse than the one before.

I am beginning to feel like the medical community has dropped the ball with my case.  Many phone calls have not been returned from the TWH, Gamma Clinic. I've heard every excuse  going; most recently they have had no record of me calling and maybe I was calling the wrong number.  SIGH

My doctor here has been wonderfully supportive but she doesn't know how to help me because I am her only patient with an AVM who has had this treatment. The wrong medication to help the seizures could be deadly.  She is also trying to connect with my Neurosurgeon.

Last night I decided to take myself to the emergency room after two back to back seizures.  Just going to ask for help is a big deal because the reality is I know more about AVM's and GKS than any of the doctors in the emergency department (they are that rare).  Dr. A was great. He listened and respected that I knew exactly what was going on.  At my insistence he called the On Call Neurosurgeon at TWH to consult about anti seizure medication. The Neurosurgeon told Dr. A that "he does not support Dr. C's patients!" then rudely hung up on him.  So where does that leave me?

I have tried to go back to work and been unsuccessful.  In fairness to the people I support and my employer I will take a leave of absence until the side effects from treatment subside. I will continue to harass the the TWH GK Clinic and find the answers I need to live seizure free.  I will carry on. 

13

You may recall that I said the other day that I consider myself a pretty good parent AND that I am aware of what's going on in the lives of my children and their friends....then I remembered that I am also raising a teenage girl.  All "good parenting" goes out the window when you have a 13 year old girl.  I think that I am reasonable and open minded; then I open mouth and everything I swore I would never say is on the tip of my tongue.

I hear from other parents and teachers how wonderful she is.  Most of the time  at home she is happy, kind, caring and funny. Then, she is not.  I guess I'm glad she saves it for me.

As for their friends you only really know what your child tells you.  The colour they are painted is based on the information you receive.  I know that I am getting the filtered version (or the perception of her 13 year old brain).  I am surprised at some of the things I hear about what goes on at school.  Then I remember that other parents are probably hearing the same things about my child.

To all Teenage Girls... Hug your Mom.  We are trying so hard to do and say the right things. 
To all the other Mothers of Teenage Girls... I'll help you stay sane if you help me.
To my Mother... I am so sorry.

Parenting B....

I consider myself to be a pretty good parent.  I am aware of what’s going on in the lives of my children and their friends.  We have rules and consequences.  We have a routine and lots of structure.  We are consistent.  I believe that, one day, they are all going to have the necessary tools to tackle the world on their own.  Some days are more challenging than others to be a good parent. Today is one of those days.

Our son B has Aspergers Syndrome.  He was diagnosed when he was five.  As he gets older he can explain his feelings and thoughts clearly; helping us better understand his needs.  Most of the time he is a typical, almost 11 year old, boy.  He is happy, funny and a great artist.  He loves video games and superheroes.

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As going back to school approaches the mood in our home is changing.  B’s anxiety is on the rise affecting my own level of calm.  He is picking fights with me so he has a valid reason to be mad.  In his different kind of mind he can rationalize that he shouldn’t be angry about going back to school because everyone is; but if he is angry that I will not purchase him a new gaming system it’s a valid emotion.  Sigh….

For every child a new school year, new grade, new peer group can cause some jitters.  For B it can be overwhelming. Thanks to small miracles he has the same teacher and Educational Assistant as last year.  That will make the transition from summer to fall a little easier on all of us.  

B grew over the summer, which means new shoes, new clothes and more annoying tags to cut.  Smalls things like keeping his backpack and lunch bag from last year will make it easier on all of us.  No way am I to buy him a calculator, though I am sure it’s a requirement in grade six.  Mechanical pencils only please!

My challenges this week will be:
·      Getting him to bed and up again at decent hour.  Bus comes at 7:45am!
·      All screen time needs to be pared back so he can focus while at school.
·      Reading!  The summer reading list was abandoned week two as he insisted he was reading every time he had to do a search on the internet. Some things are not worth arguing about.

Normally these are all things I try to maintain throughout the summer but this year I dropped the ball.  Busy recovering I guess.  Surely something I will pay for in the weeks to come.  Wish me luck.

Eating right...for my type...

For the past several years I have lived in a body that I don’t recognize as my own.  After I had baby number three, almost eight years ago, I was in a bit of a fog. To be completely honest I never even noticed how large I was until she was about one year old.  Then I was too tired to do anything about it.

Since I have tried a variety of weight loss programs, attended dance classes, walked regularly and spent hundreds of dollars working with a personal trainer.  Though I never reached my ultimate goal, everything I have tried up to this point has been an amazing teaching tool.

Since surgery I have shifted my thinking away from weight loss.   A big part of my road to recovery is decreasing inflammation.  If I can lose weight while decreasing inflammation, that’s just a nice bonus.

Inflammation is defined by Merriam- Webster as: a local response to cellular injury that is marked by capillary dilation, leukocytic infiltration, redness, heat, and pain and that serves as a mechanism initiating the elimination of noxious agents and damage of tissue.  Inflammation anywhere in the body is bad but when your brain swells it has nowhere to go because it is encased in bone.  This will lead to more complications that I don’t want or need.

Four months ago I began researching and applying the principles of Eat Right 4 Your Blood Type founded by Dr. Peter D’Adamo to help me decrease inflammation.    Every blood type is unique and each has foods that are considered beneficial (medicinal), neutral, and avoid (toxic).  The research behind this way of living makes complete sense to me.

 As a type O the first foods I eliminated was wheat and corn.  I replaced it with rice, quinoa and teff flour.  I can honestly say I feel so much better.  I don’t miss crackers, bread, bagels and cookies like I thought I would.  I make gluten free bread once a week to freeze and eat when I want to.  My amazing friend J bakes me the most wonderful gluten free chocolate cake or cupcakes if I really need to indulge.

Next step is to be active again without further exhausting myself and reducing dairy. 

Becoming a minimalist...

Today is the day for cleaning out closets, cubbies and drawers.  I am beginning to feel like I am on an episode of Hoarders.

There are five people living in this house and this morning I counted 13 pairs of shoes in our muddy room.  Flip flops, running shoes, rubber boots, work boots, sandals and more.  That number will quadruple when I actually open the closet door. 

The linen closet is another nightmare.  Why am I saving curtains that are sun faded?  I will never dye them.  Do I still need a vaporizer that I haven’t used in three years?  Why are light bulbs being stored in the linen closet yet I don’t have a shelf for my extra towels?  Why do I need extra towels? When was the last time I used those sheets?  Our youngest is almost eight; I guess it’s time to get rid of the last of the bibs and receiving blankets. 

In the past three months we have had three garbage bags of hand me down given to us.  I love receiving hand me downs from older cousins and friends. We have multiple totes of clothing that I have been saving until someone grows into it. Hand me downs save us lots of money every year but I could seriously open a thrift store right now. Today we will spend hours sorting, purging and bagging up unneeded items. Keep what we need and give away the rest to others who could use them.

My friend P recently shared with me that she believes everything should have a place.  If you are saving a trophy, toy or memento from your childhood then it should be honored and on display not keep it packed away in a box on the top shelf of the closet. I like it.  If you can’t honor it, get rid of it.  If you haven’t used it in six months, get rid of it. If it doesn’t fit, get rid of it.   If you resent having to dust it, get rid of it.  If it’s taking up space that you need, get rid of it.

I envy people who have just what they need and no more.  In theory if there is less clutter in my home then I will have less clutter in my brain.  I like it.  So I will add becoming a minimalist on my list of goals to accomplish over the next three years.    It will likely take all three years with the amount of things I need to go through.

Sleep, wonderful sleep…

I like sleeping.  I like it a lot.  As a child I never really fought to stay up late.  Except when I was in grade three and TB told me that she got to stay up until 10pm!!  As a new Mom I couldn’t wait for bedtime so I could collapse into my bed (or theirs) worn out.  As my little kids grow into big kids I am often asleep before they are.  They are becoming night hawks like their father.  I rarely watch television because most of the good shows are on way past my bedtime.

So I like and desire sleep but I don’t always pull it off.   As a woman and a mother I have perfected the art of carrying on and pushing past exhaustion.  Occasionally I don’t get enough sleep because I have too much to do and it can’t be put off any longer.  Twice a month I work a night shift and that messes me up for a few days.  Sometimes my busy brain won’t shut down and I just can’t sleep. Other nights I dream crazy, crazy dreams and it just feels like I haven’t slept.

I am currently 7 weeks post Gamma Knife Surgery and sleeping has become extremely important.  If I am over tired I have focal seizures.  Most recently these seizures occur in my mouth effecting how I talk and processing what I want to say.  They last about three to five minutes but it feels like eons.  Every time I have one, they get a little bit worse than the one before and last a little longer.  My neurosurgeon reminds me, regularly, how important it is that I listen to my body because my body knows what it needs. 

Today my body told me that I couldn’t complete my shift.  I tried to argue but it won. My body said to sleep at my Mom and Dad’s before I came home.  I did.  It is currently telling me to back away from the computer and go to bed.  I will. Soon.

ps - if you checked the link and read that "very rarely" some people have side effects and may lose a little hair - I'm some people.  Just lucky I guess. :)

Why me? Why not?

Looking back on the path I have chosen I would say I have led a pretty fantastic life so far. I am married to my “high school sweetheart” and together we share three wonderful children.  I am pleased with the decisions that have led me to where I am now.  Have I had moments of, “oh no, what have I done?” ABSOLUTELY!

Two years ago I impulsively quit a job I loved at a children’s resource centre. I adored the families that I interacted with daily.  I believed (and still do) that parents are a child’s first and best teacher.  It gave me tremendous joy to watch shy babies grow into confident toddlers; and nervous, exhausted parents become secure and enthusiastic about their new role.

So why did I leave?   At the time I confused myself and everyone around me.  I was becoming worried that I would no longer be able to connect to the families as my own children grew older.   I had always made families and their needs my top priority.   Management required me to spend more and more time behind the scenes, and I felt conflicted.  I was afraid of losing my passion.  It was just time.   For weeks I was certain I had made a huge mistake.  If it wasn’t for the patience and support of my husband, and close friend J, I would have continued to doubt my decision.

It is said that everything happens for a reason and I believe that is true.  I understand that now more than ever.  Leaving my job opened me up to new opportunities.  I have more free time to spend with my own children.  I have become more present when I am at home because I don’t have to fit in something that didn’t get done at work.  I have a new career that is equally fulfilling and extremely flexible. I have met wonderful new people that I may have never known.  I have broadened my education by taking Anatomy and Physiology courses that have helped me better understand my current condition and navigate my way through the medical community.

I have had many moments in the past six months where I have asked what I have done to deserve having an AVM.  Why do WE have to deal with this? If everything happens for a reason, what can the possible reason be? 

Slowly I am figuring it out…

• I can deal with this.  I am strong and confident.
• I am a great advocate for myself and others.
• I am an educator and I love sharing everything I know.  If I don’t know, I will find out.
• I live in a wonderful community filled with loving, caring neighbours, family and friends.
• I have three children who love me – no matter what.
• I have an amazing, supportive husband!  With him by my side we can do anything.

Why me? Why not?

The beginning...

Every journey has a beginning.  My journey began with a headache.  A headache that led to a CTScan, to a MRI and to a Cerebral Angiogram.  A headache that led to a diagnosis of an
Arteriovenous Malformation in the left frontal lobe of my brain.
 Basically an AVM is a tangle of veins that doesn't belong. They are very serious and very rare. An estimated 1% of the population. Over time they become weak and rupture. They are commonly discovered after a stroke or during an autopsy.  I am very lucky.

When a major health crisis interrupts your life you rethink everything.....

What can I do to help myself heal?  What changes do I need to make to become healthier?
What are my beliefs and values?  Do I honour them?
Have I been a good daughter, sister, and friend?
Does my husband know how much I love him?  Does he know how grateful I am to have him in my life?  Does he know that I think he is an amazing father?
Am I a good parent?  Am I engaged enough? Am I raising my children to be resilient? 
Am I living my life with purpose and meaning?  Could I be doing more?
Am I surrounding myself with people that make me happy?  Am I making them happy?
What is really important to me and my family?  What changes need to be made?

As I adjust to my "new normal" I look for and find something that makes me happy everyday. Sometimes its simple things like the wind blowing the clothes on the line.  Sometimes it's the knowledge that I have made a difference.  Today is was starting this blog with the support and encouragement of my friends.