Redefining my role

I have a restless soul.  I am rarely at peace with myself.  I would to like blame it on the monster but that would be a lie. It is simply who I am.  Having so much time alone in my head just heightens my awareness. I recently find myself circling.  Thinking a little too much.

Metaphorically, I have never been one to sit around and watch paint dry.  I'm always ready to start the next project.  I never sit back and admire my work. Relishing in success.  Patience has never been my strong suit as I always continue moving forward - dreaming, planning, creating, doing.

When my babies were small I didn't just babysit. I ran a home business and a very successful community playgroup.  Always needing to do a little bit more.  That role led me to a career working with families.

I have volunteered countless hours, sat on boards and worked for and with several non-profit agencies.  I was never just an employee though.  I had to know everything.  If I was going to attach my name to a position I was going to excel at it.  Be an expert.

I have always been a student.  In fact, this is the first time in my adult life that I have not been actively enrolled in school.  No papers to write, no assignments to complete and no exams to study for. No professor to sign off on the A+.

This is also the first time in many years I have not been an employee.  No time lines, deadlines or accountability. No performance appraisal to tell me I'm on the right track and doing a good job.  It is a odd feeling.

As I circle inside my head I wonder if my drive, determination, need to succeed has led me to this moment.  If all the hours I have invested into others in my community has taught me the skills I will need to be successful - in my recovery and here at home.  If this has been the bigger plan all along?

I need to to continue to heal.  My seizures are still active but strangely I am getting use to them.  I budget time for them and my recovery everyday.  My new normal forces me to stop - literally.  Patience is a must.  I can't rush recovery.  The monster has it's own agenda and I'm not privy to it.

We are building a homestead and creating a plan for sustainability. There is always much work to do. Research, planning, doing...

As I continue to circle I will redefine my role... figure out who I am.

Letting go...work

In an attempt to gain some control in my life I need to make some changes.  

I handed in my resignation at work.  I didn't have to.  I chose to.

I have been on a leave of absence since the monster in my brain took hold, rattling it regularly with seizures.  I had planned to go back once things settled down medically but I had a moment of true clarity.  I realized that as long as I had a timeline of when I was to return I was going to remain unwell.

As a Social Worker I have never left work and simply flipped the switch and forgot about every  interaction I had through out the day.  Maybe some do - I do not.  Every person I have ever worked with has had an impact on me.  I think about them, their needs, their dreams, how I and we as a community could do more.   Core competencies, best practice and developmentally appropriate are a part of my regular vernacular. Talk to me sometime and you will know this to be true.

It is ridiculous to believe that while I was on a leave of absence that I stopped caring about the people I have supported.  That I was unaware of what was happening in my own community.  When you live and work in a small town everything is under a microscope.  I didn't seek out information; it was either completely visible or brought to my attention by a concerned community member.  So though I was away I continued to care, have opinions and advocate.

Now I choose to hand back that responsibility and privilege.


 
A reminder from my Inner Pirate...

The swelling in my brain has left me with temporary aphasia, a communication disorder.  
It does not effect my intelligence.
Don't talk to me, at  me or about me like I am stupid.
Furthermore, I remember what confidentiality and in confidence means and I still practice it.
I wish the same respect be extended to me.

Next chapter please...

GUESS WHAT?

TODAY, I QUIT MY JOB!

NO REALLY; I DID IT.

AND YOU KNOW WHAT HAPPENED?

NOTHING! 

AND YOU KNOW WHAT ELSE?

I'M ALREADY HAPPIER FOR IT!

END OF ANOTHER CHAPTER.

Patient update

AVM's are considered congenital, we are born this way.  In extremely rare cases Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) or HHT. 

In July 2011 I was referred to a doctor who researches HHT at St. Michael's Hospital in Toronto.  Given I have an AVM in my brain, some unexplained deaths and other members with AVM's in my family it was deemed necessary.  While at my day long appointment I had several tests searching for more AVM's in my liver, lungs, extremities and heart.  Though no more AVM's were found, during a ECHO Bubble Study they found something wrong with my heart.  Since then I have been under the care of a Cardiologist.  For eight months I have had several tests investigating the possibility of having Cardiomyopathy. 

Yesterday was results day.  I am very pleased to report I do not have it.  Happy dance!!!!  I met with my Cardiologist and he told me that during rest the left ventricle of my heart beats at the lower end of normal.  During activity it beats normal.  He told me I rocked my very awful fitness challenge.  You know the test where I rode a bike, sideways, breasts exposed, having an ultrasound with a cheering section present.  Fun times.  My heart muscles look healthy according to my MRI, the gold star in imaging.  I have been discharged from his care.  Deep cleansing breath. 

HHT testing continues.


Next stop of the day was to spend some quality time with my Neurosurgeon.  I had an appointment with Dr. S but my Neurologist Dr. C decided to join us.  Wow -  two members of my team giving me there undivided attention.  I thought for sure I would have the answers I desperately need.

Be warned this is were I begin to struggle. 

Though I am experiencing regular seizures, joint stiffness or weakness, confusion, vision loss, loss of speech etc etc etc  Dr. S is thrilled.  He believes that treatment is working.  Maybe, just maybe, my AVM is even gone already!  Of course we won't know for certain until we see my brain again in June, but maybe.

Now don't get me wrong if my AVM atrophies and is completely gone that's great. Less chance of a  homorrhotic stroke.  Right?  But when I questioned them further about my seizures and other side effects they seemed a little puzzled.  When I asked them about alternative measures to reduce or eliminate my side effects I was told to continue taking my anticonvulsants and maybe within time we could try and wean me off them and see what happens.  Those would be the same anticonvulsants that are not working now.

Thus lies my frustration.

My doctors measure success by the prospect I will, in time, be AVM free.  Therefore, their treatment plan was successful. Yeah them.

I measure success by the quality of life I am going to live post AVM and Gamma.

Next stop.... Naturopath.  YES, it's true :)
Now that's something I truly am excited about. 
Someone who will treat all of me;  not just my parts.

Sending love from the hill xo

Food frenzies and friendship

One of things I miss the most about my pre AVM/Gamma life is my ability to network at my own will. To jump in my van and visit friends, walk around head lake, go to the grocery store or even go to work. To talk to friends, family, acquaintances or colleagues face to face. To exchange information. Thank you Mark Zuckerberg for Facebook or I would be completely insane by now.

This past Sunday John and I enjoyed the company of eight other families at our monthly "Gluten Free Food Frenzy".  The group was established by my friend D and her daughter this winter in an effort to "simply share knowledge and build community around the gluten-free lifestyle by hosting a monthly feast. It is a family friendly fun and fabulous free of gluten (egg, soy,dairy, peanuts and other allergens) food fest."   Month to month the attendance and location varies but each of us come to enjoy fabulous food with like minded families.  Not all of us have food allergies but we all share the belief in healing our bodies with good food.

Sunday morning was rough for me.  I had continual focal seizures and I was exhausted.  Logic said I should stay home and sleep but I chose to go.  I am so  glad I did. 

My friends know that at times its difficult for me to string a sentence together.  To focus, collect my thoughts and say what I want to say (Writing is easier. Possibly because I can continue to edit over and over). After a morning of seizures I thought I would be a disaster.  I didn't plan to stay long.  We were the first to arrive and one of the last to leave.

Funny thing is my comfort level with this group was so relaxed that I never struggled at all.  Ok I did a little but it wasn't a complete disaster. I also knew that if I did have a seizure I was completely safe.  John was by my side to translate if necessary.  My friends wouldn't care if I couldn't talk, stuttered, stammered, or even drool.  We had the stage ready if we needed to play charades ;)

How refreshing and rejuvenating it was to have real conversations about the things that matter to me that wasn't completely AVM related.  How wonderful it is to have loving, caring, real friends, both old and new.

Thank you John for taking time away from fencing to support me.  ( thanks for fencing as well)

Sending love from the hill.