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

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.