Dear Sammy

Just spoke with Saraeve my eldest child
She is 35
This I mentioned already to you
I want you to know something very important

When my child Saraeve had her first seizure
I cannot begin to tell you what the next ten years had in store for us
I went through the entire process including all test and the brain surgeries
She was in her very early twenties
Her first doctor
neurologist Dr. Rosenbaum of Teaneck NJ
NEVER
I MEAN NEVER dismissed what she would express to him
how her out of body experience felt like
For her she said it was like déjávu
She still to this day has many moments feeling that out of body experience
Surgeries did not help
And she lost vision in right eyepermanently
Blind in right eye
She has learned to live with it
However my point I want to make
This doctor never NEVER gave up on my daughter
Most every test and I mean sooooo many tests
and then the meds
It was very frustrating for her doctor knowing what she was going through
and it was real
NOT IN HER HEAD
WHAT AN OXYMORON
In the end while hooked up in the hospital and I mean hooked up
wires and leads all over the place and then it happened as the doctor was trying to provoke a seizure
she had one alright
had a grand one passing out
Her entire brain seized
She was passed out for a short period of time
As each time one suffers a seizure brain cells die on a much quicker scale
Again my point
YOU STICK WITH WHAT "YOU KNOW" "YOUR OWN BODY AND MIND"
Don't let anybody tell you what you are feeling
Unless they have the same issues as you and my child have gone through
She never allowed the few doctors who told her there wasn't any thing wrong
Guess what
She was diagnosed with "occipital lobe epilepsy"
In your faces to the doctors who tried to make her believe there wasn't anything wrong
I believe you 110%
I'm going off subject for a moment
BECAUSE
You are such a smart young articulate human being
You have much to offer with this horrible feeling it causes you to feel
And you help others by expressing your story
The reason I changed subject
You again are so aware of your own body
I so impressed
Recognized when missing your dose how your body and mind behaved
Chances are you are 100% correct that it is from the missed dose

Just to help you understand I get you
I want to share something personal

I had a double radical mastectomy 1/9/2012
After finding my cancer lump in my right breast
Know this as a FYI
Men too are to check their breasts as they to are equally susceptible to the same disease as women BREAST CANCER
Statistically neck and neck with women
I was floored to hear the statistics

We hear you loud and clear
And I hope and pray there be a better understanding of how it affects our brain and body
I speak of medicines

I began taking the medicine called tamoxifen
This drug shut down my estrogen out put
Shut my estrogen down
Because my breast cancer is estrogen driven
CAN YOU IMAGINE
IT HAD TO BE THE FEEL GOOD HORMONE MY BODY PRODUCES
NEEDED TO BE SHUT DOWN
And what followed wasn't fun
My feel good hormone gone
Causing me to feel unnatural thoughts and physical changes
This just a small example
The facial hair much thicker on my face
I can still get away with a decent look
You know what mean
Like under my nose
A slight mustache
I never liked waxing or any kind of hair removal
So I bleach it
Like I said
I can still get away with it
But it's there
And it's not my imagination what I feel
Depression of another kind added to the other stuff
And this new kind of depression that began as a result of my estrogen depletion being on tamoxifen
Went through menapause quicker
I know my body like nobody else
As do you know yours
I know my brain and what it feels and thinks
And I so understand your frustration
If and until this all works itself out with your doctors
you MAKE them listen
I have such HOPE for you
And no fault of your own
And certainly not something to be embarrassed about
Stand firm Sammy
But in the meantime
If you can remember
You are responsible for your happiness
With what you let in and out of YOUR LIFE
You matter
You are a strong individual who has a good grip on what's happening
Making friends isn't easy
But you keep fighting this fight
Don't let it consume you
Make time to give yourself HAPPINESS
HOWEVER you may
Just get that belly laugh in a day would be an awesome thing
Wouldn't you agree
Who doesn't like to laugh

Glad I dropped bye
I will do so every once in a while

You matter
And so many care about you
Have a wonderful day
Know you are thought about
Enjoy all you can
Life goes on by just so quickly
Make it count for you
Love
Me