Happy 18 months to me and holiday wrap up.

Yesterday I received a message from a friend of a friend.
It was completely unexpected that he even remembered but totally awesome that someone gets it.
It read, "Happy surviving 18 months of shit getting real."

December 22nd was not only my totally fantastic husbands John's 40th Birthday (HAPPY BIRTHDAY!!!) but also the monster and my 18 month post Gamma anniversary.

John and I  finished our Christmas shopping in the morning. The kids made cupcakes for their Dad while we were out. The monster and I celebrated during the afternoon with ear plugs, ice, Tylenol and a nap (read small coma).  John made his own Birthday dinner because I'm a lousy wife, mother and human when the monster is winning.  Johns Dad visited for celebratory cupcakes and coffee in the evening.  Coffee finally killed the headache and silenced the monster before bed so life is good again this morning.

So whats the big deal with 18 months you ask?
When I signed up for this adventure I was told 100 different things but two are highlighted:

• At 18 months radiation becomes the most active and is working the hardest. I'm assuming that also means that side effects will be working just as hard.  So far that assumption is accurate.
• I have an 80% chance the AVM will occlude by three years therefore18 months also marks the half way mark to goal of being AVM free.

Happy 18 months of shit getting real to me!!

Our entire family is officially on Holidays until January 7th.  A well deserved break for John who has not stopped moving in months (maybe years).  Though there is no such thing as a real vacation when you live on a farm, we will definitely be moving in a much slower pace.

Our family has many goals for 2013 and I am hoping to get some of the vision on paper very soon.
Everything seems more real when it's on paper.
A working work plan, a dream board, a wish list, a Pinterest Board ...
It may read a little like this;

• Design and build a green house - the trusses are already here. Fishy, fishy, fishy to be incorporated.
• Design and build a big barn - the trusses are already here.  Moo, baa, lalala
• Re-fence and electrify the pasture - the fence and wire are already here. 
• Decide where the new chicken coop is going to be - permanently.  And really decide what type of hens I want to live there.  I change my mind on both daily. cluck, cluck, cluck and cock-a-doodle-doo
• Turkeys.... gobble, gobble. gobble.
• Secure some more weaners for early spring. oink, oink, oink.
• Design an orchard that includes more bee hives. buzzzzzzzz 

Dream big, dream bold...

In closing I wish each of you a Merry Christmas and happy holidays.

xo

Whats on my mind?

If you really know me you will know I have very strong opinions.  Having a brain injury, as a result of Gamma not the AVM, hasn't changed that.  However, now my filter is bent and slightly broken so I'm not as tactful as I once was.  Does it bother me?  Occasionally.  Other times not at all.  Some people need to be shook into reality about me, us and whats going on in our community and beyond. 

I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent.  For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.

If I can accurately predict my future I will say you are going to see a lot less public acting on my part.  I am tired of pretending all is well when it is not.  What you won't see is me posting about it on Facebook.  I will still continue to be very active on our BLACKberry Fields fan page and share information.  I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends.  I will still participate with private groups I belong to.

However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?".  Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates.  I am guilty as well.  I have decided I need more.

I intend to be much more active on this blog.  It will be unfiltered so if you really want to know whats on my mind this is where you will need to look.  Keep in mind before you subscribe the following user tips:

• I will run this blog like a monarchy where I reign as queen.  You can comment your opinions as you wish but I will have the last say.  (Refer to my last post about writing my truth.)
• I will write about gender bias and feminism because it is very important to me.
• I will write opinion pieces about parenting because that is what I know.
• I will write about farming and sustainability because that is where we are going.
• I will write about what I really think about the medical community and you may not like it or want to hear it...  It will give you something to think about and then you can seek your own truth.
• I will write about my history and how I got to be who I am.  
• I may ramble because sometimes that's whats happening in my head.

Today is the start of something new.  Welcome.

PS - I also love Pinterest so I hang out there frequently.

Before we go any further...

Everything I write belongs to me.
I own it.
Whether it be my thoughts, feelings, perspective, my opinion or other wise, it is my reality.
It's not open for debate.
It's my story.
How you interrupt my words it is up to you.
How it makes you feel isn't about me.
It's about you.
Your story.
Your feelings.
If something I have written makes you uncomfortable, ask yourself why.
I don't write to hurt others.
I write to give a voice to my truth.
It is my outlet.
More and more often I find myself censoring my words.
I feel like I can't be authentic in my own space.
Today that stops.
I have acknowledged repeatedly on this blog and in person how grateful I am to those who have loved and supported us this past couple of years.
Many relationships and friendships have forged and solidified.  We are very fortunate indeed.
To have people question my gratitude is annoying in the very least.
Disappointing and yet very predictable at best.
If we haven't accepted every offer of support and help there is a reason.
Don't question it. Don't try to make me feel ungrateful.
I know who I am, what I need and when I need it.

Falling into Fall - Literally

Our children have been back to school for about six weeks.  Everyone is settling nicely into their new schools, classrooms, activities and routines.  I miss their company but I welcome the silence.  It's the first time since becoming a parent I was happy to see my children return to school and it broke my heart to admit it, especially out loud.

During the past six weeks I could have written several blog posts but not one of them would have been nice.  I have heard myself say several times recently that if I don't remain angry then I will start to cry.  If I start to cry I may never stop.  It's a short fall. 

Did you know I spend all day most days alone but its not safe for me to be alone in public?
For a woman who is fiercely independent that is huge.

My brain to mouth filter is broken.  I swear more than a pirate and say what ever, when ever it comes to mind.  My friends accept that and therefore me.  Our children definitely have a more colourful vocabulary but are quick to scold me when required.  At times I am insensitive and unkind to the people I love the most.  I hope they know that is not my intent, ever. 

I apologize (kind of) to the well meaning family member who called and claimed she thought of me often during the past 2 years of zero contact.  I'm glad she was strong enough to accept my response through my blind rage.  I hope she shared my thoughts with other members of the family.  Two things will happen as a result.  I will stop receiving unwanted, guilt dripping telephone calls (too little way too late) and John will start getting the support he so desperately needs and deserves.

** PSA - for anyone who loves someone who is suffering the worse possible thing you can do is tell them you think about them all the time but then never act on those thoughts.  Send a text, email, pick up the phone, tell them you love them - do something. **

I continue to wander from symptom to side effect aimlessly.  Daily seizure activity is normal despite my high dosage of anti-convulsants.  No answers to why or how much longer this will go on are forth coming.  If I ever do have a stroke I will probably never recognize it for what it is because my face and arm are always numb.  The clinic where I received treatment for my AVM appear to be uninterested in my new limitations and abilities. As long as their treatment plan is on track they are pleased.  In an effort to preserve my remaining sanity I have asked my family physician to advocate on my behalf.  Maybe yet another opinion is required.

We have also been in touch with Sick Kids Hospital and a Specialist there will be taking the lead on  HHT testing for our entire family.  I'm tired of waiting for answers but the thought of further trips to the hospital is exhausting.  The thought of more testing, procedures and the 50% possibility of both the girls also having this terrible disorder leaves me paralyzed with fear.

John's mother has recently been diagnosed with brain cancer and has been scheduled for a craniotomy and followed by full brain radiation starting next week.  Once again my husband will sit alone in a hospital waiting for neurosurgeons and radiologists to determine fate of a woman he loves. 

It doesn't seem fare that one man should carry such burden.  He is the strongest man I know. I am grateful everyday he is mine.  Despite more than a year full of frustration, grief and hardship he still carries on without complaint.  He has accomplished so much professionally and here on our farm.  I am so very proud of him.



** John's Mother passed away exactly two months post diagnosis and 1 month after having the tumor removed from her brain. (1/1/13)

Coping Techniques - AVM Style

My family is pretty open.  We talk, a lot, about everything.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience. 
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months.  We still have a long ways to go.

I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability.  We talk about my symptoms and side effects regularly.  We have plans in place in the event of an emergency.

What we haven't talked about much is how it's effecting them.

Obviously there has been an impact.  I know longer drive so I can't always be or get to where we need/want to be.  I know longer work so there is less income.  It also means that John is working more.  I am home all the time and that has pros and cons.  I can't always be mentally or physically available to them like I have been or would like to be.  When they are in school it is less noticeable.  We compensate and juggle the best we can but we are not always successful.  There is lots of planning and little spontaneity.

So this week I took an opportunity to find out whats going on with them.  How they are really feeling. What came out was they are afraid.  Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown.  I'm afraid too.

What also became evident was how they are coping with their fears. 

Humor was at the top of the list closely followed by sarcasm.  That makes sense considering that's exactly how John and I are coping.  I personally feel that this is a great coping skill.  When life doesn't make sense and there are no answers joke about it.  It can't hurt.

Avoidance - Admittedly our children missed a lot of school last year.  Some days it was just easier for them to be home.  I understand because I sometimes avoid social situations as well.  D chose not to participate in some of her favourite extra curricular activities.  At the time we accepted it but now I realize that she was avoiding people.  D and I are often alone together in public.  We often get stopped and people want to know the ins and outs of my medical status.  They often ask personal questions and I often respond.  She was tired of it and opted out. 

Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up.  B and I both  have very rare serious disorders.  When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen.  We also have so much more work to do when it comes to further medical testing.  My job is to put their mind at ease.  Headaches could be from lack of sleep or not drinking enough water.  Chest pains could be feeling worried or anxious about something. 

Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's  important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.

After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears.  At no time do I under mind their fear or tell them not to be afraid.  This is scary.

- We still social story almost everything.  It's a useful techniques for all children not just the exceptional.  If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health.  We listen to their physical complaints and  concerns.  We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine.  Everyone has regular chores and responsibilities.
- We have down time to play and relax. 
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it. 
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.

Stages of Grief - The AVM Edition

I spoke with my friend Angie on the phone last night.  I enjoy talking to her.  She always makes me feel like my opinion and thoughts matter.  That I am valued and important to her.

We chatted about family, her current work project (very exciting) and as always food, farming and sustainability.  When our conversation rolled around to my current state of health she asked me an important question.  "Are you angry?"  Nobody ever asks me how I "feel" emotionally.  Everyone wants information about my side effects.  Like they have something to compare them too??

I am sure most people are familiar with the stages of grief.  I think that is how I can best explain what I feel.  Keep in mind that its not a brief visit to each step.  I am constantly climbing up and down through the stages because that's my life.

Denial - What AVM? What brain surgery?

Denial is a useful coping technique especially in public but it is not terribly sustainable.  I am a terrific actress.  I can pretend all is well when I need to.  Most of the time my body and brain won't betray me.  I'm well medicated when the event calls for it. Denial is usually very short lived because I can't ignore reality more than an evening.

Anger - Why me? Why now? What if?

Am I angry?  Yes.  All the time? No.  It ebbs and flows.  It is often hormone driven.  I will always wonder what if I never knew?  What if I had never had surgery?  How life would be different if ....
I get angry with the medical community for playing down the severity and risks associated with my AVM and treatment. I get angry at myself for acting in fear.  I get angry at friends and family who either pretend nothing has changed or offer false hope. 

Bargaining - Dear God...

My relationship with God is private but I will say I speak to him much more often these days. 

Depression - Why bother?  I give up!

It would be very easy for me to slip into a very dark place.  I stand on the edge of it often.  My family has a long history of poor mental health.  It would be a very short step to disconnect from the world.  I am already isolated and have lost my freedom and independence. 
I am fortunate that I am very self aware.  I am able to pull myself back because I understand that it's completely normal to be sad, regretful and fear of the unknown.  Experiencing and really feeling these emotions are how you get to the final stage of grief.

Acceptance - It's going to be okay.  I will make the most of each day.

I can confidently say I am getting use to my new normal.  Do I wish it was different?  Absolutely, but there is more peace now.  I really do enjoy having a farm.  If I hadn't been diagnosed we wouldn't be here - yet.  I do not miss my previous job, but I do miss the people. I have a deeper appreciation for my community and my role in it than I did before.  I value my relationships with friends and family more.

Acceptance doesn't mean I have to love it.  It just means that I can accept the reality of the situation and have the courage to move forward.

Dropping an acronym and other medical news...

Wednesday was clinic day for both Brenden and I.  I had postponed both of our appointments to July to help ease some of the craziness surrounding the previous month. John and I have the trip down to a fine science as our confidence grows regularly travelling to, around and from Toronto.  Who knew?

This week we are pleased to share that B is no longer a heart patient.  Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare.  He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome.  Thus dropping WPW from the long list of acronyms that follow our names.

It has been absolutely amazing to watch this young man change before our eyes.  He has become so much more active, strong and confident since surgery.  We are very proud of him.  We celebrated with a cake.

My Neurology appointment marked my one year anniversary of Gamma Knife Surgery.  Dr. S was positively beaming when he seen me.  As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM.  It appears to be working therefore the clinic can claim success.  The draining vein is occluding and eventually will seal off completely destroying the AVM.  When the AVM dies  my risk of stroke diminishes.  That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.

When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."

Why am I losing my vision in my left eye? 
Why am I still having so many seizures (daily in varying degrees)? 
Why are they changing from partial focal to absent? 
Why are the seizures starting to cross the mid line? 
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia?  (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side? 
When will it start to get better???

"I don't know." Dr. S

Is there going to be permanent brain damage?   Sadly, yes from radiation.  Approximately 1 cm around the AVM in my left frontal lobe.  How significant, we don't know.  Once brain cells die they can not regenerate; it's forever.  Yet the brain has an amazing ability to make accommodations.  Will the seizures ever stop?  We don't know, hopefully.  We are optimistic that they will be better controlled by medication eventually.

In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic.  Will I be looking for a new job anytime in the near future? No.

Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.

Balance - Stephanie VS The Monster

There is so much I want to do.  There is so much I need to do.
We are building our farm, BLACKberry Fields much quicker than I ever imagined. 
The timing was right and we have to go with it.
I am organizing and reorganizing a household with three very busy children.
The month of June has been absolutely insane.  Maybe thats why I feel like I am struggling so much.
I am trying to help John with his ever growing business, John Black Carpentry
I try but sometimes I'm not very successful or helpful.
When I work hard and complete tasks it gives me a great sense of accomplishment.
My soul and spirit needs that.  My sanity needs that.
After several days of success I can be guaranteed several days of forced rest.
Balance

My monster has its own, very different agenda.

It likes to keep me awake with a constant woosh in my head.
If it doesn't get my attention right away it only gets louder.
It limits the use of my right arm and sometime leg so even small tasks take so much longer.
At times it makes it difficult to read, focus or string a sentence together.
Sometimes I can hear a person talking but I don't comprehend the words or their meaning; as if they are speaking in a different language.
It is a constant dull ache on the left side and sharp stabbing pains the right side of my brain.
Just when I think the monster is at rest is rattles my body with a seizure or quite literally knocks me out for a few hours.
Balance

This week is my one year anniversary of Gamma Knife Surgery.  Yesterday I had another MRI to get some good images of the AVM/Monster.  We are looking to see if the edema has dissipated and at the integrity of the vessels running to and from the AVM.  Regardless of what the images show and the prognosis, I know how I feel.  I'm just looking for the balance.

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.

What ever happened to the holistic approach?

Given my brain is a little broken as I write this my point may not be immediately clear.
Bare with me - I have a story to tell.

I have been trying to get a hold of my Neurosurgeon for a while.  Since I had my last  MRI and consultation in December my seizure activity has began to pick up - again.  I am experiencing frequent muscle weakness and sore joints on my right side.  My AVM is on the left and the swelling effects movement, among other things, on my right.  I had sent a bunch of emails, made a few calls, left some messages all of which were not responded to.  The hospital where I received Gamma Knife Surgery is not the hospital my Neurosurgeon actually works at full time so sometimes it is difficult to track him down.  As it turns out he was away for a few weeks. I decided not to pursue the other members of my team because they are not as familiar with my "unique case."  (I now have his personal assistant's email address so I cc everything to her at her request :)

A couple of weeks ago I visited my Family Physician and had her run a bunch of blood work.  She humored me but said, "you know it will all come back normal". I smiled.  I requested the lab send the results to her but also to my Neurology team at Toronto Western Hospital and my Cardiologist at St. Michael's Hospital. "Normal or within normal" are her go to phrases.  I no longer know anything and nothing in my life is within normal.

While at my appointment I shared with her my increase in seizure activity.  She suggested that maybe I go off an anti depressant I have been taking because it may decrease the effectiveness of my anticonvulsant.  Interesting.  I had already independently decreased my dose from 60 to 20mg before I had surgery so stopping wasn't out of the question. Done.  The doctor who originally prescribed this medication told me that with my "AVM diagnosis I have much bigger things to worry about now".  I assume she meant bigger than mental illness that haunts my family at large.  (Keep in mind we only have one brain).

Last fall I was referred to a Cardiologist because my Geneticist accidentally stumbled upon "something very wrong" with my heart while looking for more AVM's in my heart and lungs. Not vascular (AVM), not electrical (like B) but muscular.  The left ventricle was beating 50% slower than it should be. New problem unrelated to everything else. Really?  Unrelated?! I have learned that when you look for something you may actually find it or something completely unexpected.  I have had four different tests on my heart over the past six months. The Cardiologist has been wonderful but he too believes my AVM is more important than anything else at this moment.  I will finally hear the results and prognosis on April 4th. Sigh...  I have so many questions... What caused this?  How long has it been going on?  Does this explain why I don't recognize my own body?

Since I am already making the trip to Toronto to see my Cardiologist I decided to touch base with my Neurosurgeon - one more time.  I sent him a quick email to let him know I would be in Toronto on the fourth which happens to be his clinic day.  I reminded him of my previous emails, the increased seizure activity and told him I was no longer taking Prozac.  Within minutes he responded. "Prozac is known to cause seizures.  Please discontinue and come see me on the fourth."  Interesting!  It's never been a secret I was taking this medication.  Nor has it been a secret that I have regular seizures.  So why the AHA moment now?

I would like nothing more to hand over my medical files for the past 15 years to an eager medical student and say. "Here!  This is a list of symptoms and though they may seem unrelated I feel like everything is connected.  I am of one body and mind.  Please do not treat a part of me.  Treat me as a whole."

Listening to my body

As a woman, mother, wife and employee I have often pushed past discomfort, pain and exhaustion to get just one more thing done.  My body was trying to tell me to slow down, take a break, STOP but I often didn't listen - if ever.  The constant pressure I put on myself  to do and to know often left me feeling grouchy and tired by 7pm.  But I never listened.  I carried on.

 My AVM diagnosis interrupted my life and the side effects of treatment has left me "disabled" or differently-abled. I was forced to start listening to my body or immediately suffer the consequences.  I still have much of the same drive and determination I always did but I now work on my bodies timetable.

Instead of eating what ever, when ever I have to plan my meals.  I rarely if ever feel really hungry (a side effect from my anticonvulsant) but my body needs good, whole foods to decrease inflammation in my brain and help me heal.  I can no longer eat wheat and most dairy because my body doesn't tolerate it well.  I'm not following some weird, quirky trend. I am listening when my body tells me it would rather have yummy left overs for breakfast than sugary cereal.

I have always been a morning person.  I have always enjoyed going to bed fairly early.  I like sleep.  Now I have to do as much as possible before noon or it will not get done and my list will grow. I have to schedule appointments and telephone calls early in the day or risk not being able communicate my needs.  Now I have to rest or sleep in the afternoon or I will not be able to function through dinner.  Now I always sleep when I am tired because I am listening to my body.

I love exercise and fitness classes.  I know you are thinking, really?? No it's true, I do.  I loved being a member of the gym, taking dance and yoga classes.  I love walking, hiking and swimming.  My body feels wonderful and alive when I am done.  My truth is I rarely made time for those activities because I had scheduled myself too tight during the day and I felt guilty leaving my family in the evening.  Now I have tons of time during the day but less freedom, money and energy.  I can't even safely walk the dogs or go snow shoeing alone. Evening classes would be a disaster.  What I do have is a computer, DVD player, space, yoga mat, weights, running shoes.  In order to listen to my bodies needs I workout every morning before 9 and feel fabulous for it.  If I can drop a few pounds in the process that would be great but it's not the goal.

Pain is bad.  If I am feeling pain anywhere it means I need to stop and listen to what my body is trying to say.  I can't mask pain and carry on like I use to with over the counter medication or I risk having a stroke.  So now I listen and the pain will subside with ice and sleep.

Listen, always listen, to what your body is telling you.  Your body knows what it needs. 

If I only knew and the conflict between two minds...

I want to start my post by saying that I never intended this blog to be everything AVM.  I usually have many opinions that I like to share on lots of subjects.  I once considered myself an expert on many things.  I thought I would write about those things.  As it turns out the monster who lives in my brain, aka the AVM, rules my world.  This is not my choice but my new normal.

My Mom recently asked me if I knew then what I know now would I have chosen to have Gamma Knife Surgery.  The answer with out a doubt was - No, never!  I wish I never knew.  I wish I could have continued to live my life as I was. I wish I had my life back. I wish to live seizure and side effect free.  I wish for simple. Gamma was my only option besides do nothing.  I was reassured that it was safe and side effects were rare.  I was assured I could return to work as normal after 48 hours.

This has not been my experience.  I am currently waiting to hear from my Neurologist.  I need answers that I hope he can provide without me traveling to Toronto.  I am emotional, tired, angry and continuing to have seizure activity.  I didn't sign up for this.

My friend Melissa reminded me this morning that my side effects could indicate that the treatment is working.  I needed to hear that and I thank her.  It has put things back into perspective a little.

I chose to have Gamma because doing nothing was not an option.  I don't want to have a stroke and risk dying at 36.  I watched close up what it was like for three boys to lose their Daddy and his Wife and family struggle to carry on without him.  I don't want that for John or my children if I can do anything to prevent it.  I want to help raise my young family, even if it means I have to do it differently.  I want to live a productive life even if it is not the life I originally chose.

Today I choose to make peace with my side effects.  I will take them as they come.  I will cope the best I can.  I will continue to self advocate and ask questions.  I will call my Cardiologist and actually acknowledge that something is wrong with my heart.  I will continue to ask for and accept the support and understanding of John, my family and friends even when I make it hard.   I will try to remember that my children are just that, children, and they will not always be sympathetic to the situation and that's okay. I will continue to heal on my monsters time table.

Stephanie

Reflecting on a year...

One year ago I had my first CTScan.
One year ago I got the news that something was wrong; very, very wrong. 
One year ago John and I kept a huge secret from our family and friends.
One year ago we thought, believed and prepared for the worse.
One year ago I cried so many tears, lived in fear and suffered silently with John by my side.

Six months ago I had Gamma Knife Radiostatic Surgery.
Six months ago we knew something was wrong but we had a plan to fight.
Six months ago our friends and family rallied around us and gave us their love, support and strength.
Six months ago I had hope and was optimistic about the future.
Six months ago I still cried, was less fearful and talked a lot, to anyone who would listen, about my rare disorder with John by my side.

Today I am a survivor.  I have obstacles and side effects but I am a survivor.
Today I am still me. Authentically me.  A little dented and damaged but never broken.
Today I surround myself with the most amazing people.  I am truly blessed.
Today I continue to be prepared, I still have hope and the future looks a bit brighter.
Today I have fewer tears and less fear.  I continue to advocate for myself, and now our son, with John always by my side.

Thank you for your many random acts of kindness, thoughts, prayers and generosity.  You know who you are and we as a family will always be grateful.

Conversations with myself....

I have been asked several times lately about how my friends, family and community has supported me on this medical adventure.  I have been asked if people have offered to help.  Always.  I have been asked if we have accepted help.  Sometimes. I have been asked if people have let me down. Yes.  I have been asked if some people have surprised me with their kindness.  Absolutely. 

So many questions has got me thinking - again.  This morning while doing my regular daily chores I wrote a blog in my head. The blog that I want to write now is completely different than what I wanted to say this morning.

This mornings conversation with myself...

Sometimes I am sad, angry and frustrated (5%) ...

• I long for people who choose not to be apart of my life.  I know logically that this is their issue not a reflection of me but I miss them more than words.
• I miss my Grandmother who passed away four years ago.  Maybe I didn't grieve as much as I needed to at the time but I would do anything to watch her knit, help her bake butter tarts or have her "Bless my little heart" just one more time. 
• I am hurt by my family who has all but ignored the severity of my medical condition let alone acknowledged that of our sons.  Nothing can be compared to what we are facing nor can it be minimized.  I am equally sadden that virtual strangers want to be a part of our lives and help us but the people who should stand by you know matter what have disappeared.
• I hate when people ask questions but don't actually listen or try and comprehend the answer.  I hate it more when they ask again...and again.

This afternoons conversation with myself...

We are so blessed (95%) ...

• We have some of the most amazing friends.  Today I spent the morning chatting and giggling with two of the finest while decorating Christmas trees decorations. Thank you Lisa and Jess - I love you both so much.
• Not a day goes by without a message or telephone call from someone who genuinely cares about how we all are. I have reconnected with some friends who have been so wonderfully supportive.  More than they even know.
• I have met fellow AVM survivors who get it - really get it.  They understand the emotions because they live it with me.  My life is better with them in it; and to think we could have remained strangers is unthinkable. Thank you Mel, Binky and Holly for being apart of this journey.  I can't wait for our AVM free party :)
• We live in a wonderful community.  Not once but twice this week food has shown up unannounced at our door.  Neighbours regularly offer rides and support our small farm by purchasing preserves and eggs. Some peoples generosity has been extremely humbling and you can be assured we will pay it forward as soon as we are able.
•  I have a wonderful mother and father who love us, show enough concern but also give enough space - (Thank you xo) They are always willing/able to care for their grandchildren and our many, many, many animals.
• John and I share three of the most incredible children. Each of them uniquely funny, smart, creative and resilient in their own special way.
• I am so incredibly fortunate to have John's love and support.  There are no words to express my love for this man.
• Then there are people like our friend Erin who asks question because she wants to understand and wants you to understand.  This is the gift she gave to me to share with you.  An article she wrote about our adventure so far - Thank you Erin

Oh where, oh where, oh where is Stephanie???

I have a small confession.  I forgot my blogger account sign in name and password. I forgot where I wrote it down. I forgot how to retrieve it.  I was angry, frustrated and embarrassed so I didn't tell anyone or ask for help. But look... here I am.  In a moment of clarity I remembered what to do and here I am!

It's been an eventful few months so I will give you the brief synapses of what's been going on with me and mine.

I continue to have regular seizures.  An MRI of my brain on October 5th showed significant swelling,  So much swelling that they could not see my AVM.   I can't handle most sensory things like smell, loud noise/talking and bright lights. I struggle with counting, reading, comprehension and spelling every day.  It is difficult for me to talk to people I don't talk to often because I can't read people like I use to.  I can no longer tolerate (I hate that word), accept people who are angry, rude or ignorant.  I'm not trying to be nasty but I just don't have time for those people in my circle anymore. (If you are here reading this I can personally guarantee it's not you :) I choose to surround myself with positive people who make me happy and have similar values as me.  The plan for now is to continue to monitor my seizures, increase my meds as needed and follow up in December with my Neurology team at TWH and my cardiologist at St. Michael's Hospital. 

Skip ahead if I have already told you this; I tend to repeat myself...

When John and I built our house on the hill we knew that one day we would farm.  By "we", I thought HE. Turns out it's me/us.  A small hobby farm.  We would have a few chickens, a cow and a little garden.  As my health and employment status changed so did our time table and the size of our plot.  BLACKberry Fields will become a productive farm in 2012.  Once the tractor rolled its way onto the property I knew it was a done deal. 

Daily conversations about chicken, eggs and the coup expansion rule.  Closely followed by garden expansion, fencing and a new barn.  All Amy can talk about is her billy goat that currently lives at Poppa Black's farm.  Brenden wants to know how much money he is making every time he helps with anything and Dana is still cat (3) crazy!!

In a short 10 months my world has shifted.  I thought I would continue through school and have multiple diplomas giving me the knowledge required to help others.  Turns out others are now helping me.  Everyday I am grateful for the emails, telephone calls, the visits, the offers to pick me up anything and everything I may need.  I am grateful for my family who can still laugh with me through the craziness and hug me through the tears. 

My world has shifted but it's not all bad.  I like how we are living our life.  I enjoy being home.  I like experimenting with preserves, talking to the hens, planning my garden for next year.

Just so you know; I wrote down my password and showed John where it is. :)

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. 

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.