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.

The Real Cost of Being Ill...

John and I are breathing a little easier this month.  For the first time in nine months I received an income, from CPP Disability.  You may recall in an earlier post about the hoops I had to jump through to get it.

Though it is not what I would be making if I was actually at work I welcome it.  And I'm not too proud to accept it and my now "disabled" status.

Prior to my diagnosis, in February 2011, my position at work went from a full time with full benefits to a part time with zero benefits.  Zero benefits means no Long Term Disability insurance.  It also means when 15 weeks of Sick Benefits from Employment Insurance runs out there is no money left.  At least for my family.


Being ill or supporting someone who is ill is mentally and emotionally draining.  Doing so with no income is undescribable and extremely stressful.  Stress so intense that it often causes more health problems or further complications.

Thank god we had a freezer full of meat and four credit cards to juggle our increasing debt load.  We are very fortunate that friends pitched in where they could.  By purchasing our eggs, jam, blankets etc.  By sending us gift cards for groceries and gas.  By topping up our oil tank.  By giving us generous monetary gifts.  We will be forever humbled and grateful for those peoples kindness. I have learned that people want to help but don't often know how.  Here' s how...

I have a friend who has been fighting her own monster this past year.  With her permission I share her personal (private) blog.  Her story is different than mine but also similar in so many ways. I ask you to read it with an open heart and mind.  Please think about her and her message.  I am so proud of her and the courage it took to write so honestly.  This is Daniela 's story. 

Where I'm at... this is not a pity party.

For the past 13 years I have worked as a Social Worker, Early Childhood Educator, Parent Support Worker, Developmental Service Worker or a combination of all for four different agencies in my community. I have been a board member, a manager, on the front line and a volunteer. I have worked with and supported a diverse group of people and their families. I have partnered with community groups, agencies and the medical community on a number of different projects.  I am educated. I have always taken pride in putting people before paper work.

 This morning I learned the system is flawed beyond belief.  Maybe I always knew but I hoped I could help change it. Maybe through this experience I still can advocate for change.  Right now I am just frustrated.

In 2011 I worked exactly 18 shifts.  Nine prior to treatment and nine post.  I want to work.  I enjoy working.  I believe I still have a a lot to offer.  My reality is I can not.  I am not well.  It's not safe.  Period.

My other reality is I still have a family, a mortgage and financial obligations.  All the same things I had while I was working.  Fifteen weeks of sick leave through Employment Insurance is long gone.  I have no Long Term Disability through work.  I do not qualify for Ontario Works (municipal) and Ontario Disability Support Program (provincial) because they look at a families income not that of the individual.

Don't get me wrong I value my family above and beyond everything else.  But what happened to Stephanie as the individual?  Why did I contribute to MY to income tax and employment insurance if I can't utilize it when I need it?  I have applied to Canada Pension Plan - Disability and I can expect an answer by APRIL.  So in a nut shell I can't access programs I have contributed to because I belong to a family. My doctors and I have done our part but it will still take up to 24 weeks for the government to approve my claim.  I don't want to even think about the very real possibility that my claim will be denied.

This morning I found out that I do not qualify for my mortgage disability insurance (which I have paid since I was 20 years old) because I haven't had a stroke, yet. Huh. So just to clarify IF I had cancer, a heart attack or already had a stroke, no problem.  But because I can't work due to treatment I have received to prevent a stroke I don't qualify.  Oh, on a brighter side if the doctor tells them I have less than 12 months to live I do qualify! What?!  So now I have added Michelle from TD Financial Insurance Department to the short list of people John needs to call to get help IF I have a stroke.  Fantastic.

The system is flawed.

Now let me tell you what I am grateful for and what I am going to focus on....

• We are happy and healthy (if you don't count my earlier rant and all those acronyms :)
• We have a freezer full of food and I have the skills required to make healthy meals for my family.
• We are warm.
• We have a beautiful home and lots of land with many resources.
• Our bills are paid up to date.
• John is working.  (Feel free to refer him :)
• "Someone" just had furnace oil delivered to our house free of charge because they knew we would need it before the end of the winter.  Thank you...

Sending you gratitude and positive thoughts from the hill.

Steph

Life Interrupted

 

On Wednesday we drove to Toronto to meet with my neurosurgeon.  As expected he prescribed an anti convulsent to stop my reoccurring seizures.  As expected I need to take some time off of work to get my side effects under control.  As expected I have to go back in a month for another MRI and consultation to see if my brain is swelling.  Then my neurosurgeon told me that he is obligated to tell the DMV about my seizures and I can expect to lose my license for at least six months, maybe longer.  Completely unexpected!

You may be asking yourself why this is such a shock.  I have been told time and time again by friends, family and acquaintances that I would lose it; after all I am having seizures.  However, both my family physician and an emergency room doctor told me that I could continue driving because I remained conscious and aware throughout every partial seizure.  I trusted that as the truth.  My neurosurgeon believes that this is the beginning of something much bigger and it is simply not safe for me to continue driving.

It has taken me a couple of days but I am starting to work through some of the anger.

Up until this point I have been scared but never really angry.  I deal with things as they come.  Put on a brave front, take the information in, process it and continue to carry on.  John and I both have a great sense of humor so we poke fun at my AVM, seizures, general forgetfulness and other odd side effects in order to stay sane.  Wednesday I had a reality check.

Without my driver’s license I lose my freedom, independence and normalcy.  I can no longer work because my chosen career requires me to drive. Changing jobs is not an option because I simply can't focus long enough to learn a new position.  I can no longer pick my kids up from school if there is an emergency, let alone take them to extracurricular activities.  I can’t go to the grocery store, doctor’s office or visit a friend without asking others for help.  I know that this set back is temporary but I feel like it was the final straw.

I am tired of explaining what an AVM is repeatedly, especially to the same people.  I want people to understand that my recent surgery is not a quick fix but the beginning of a very long and dangerous journey.  I hate that the radiation I received is compared to those of a cancer survivor.  It is very, very different, as is my disorder.  I want my friends to listen and support me but know that I can still listen and support them.  I want people to know that I have skill deficits, memory loss and get tired easily but my AVM doesn’t define who I am.