...Continuing from the post about me discovering what all of the physical, mental, and emotional of trauma physically did to my brain: If you missed it, must read
Aside from learning all of the above seeing a Neuropsychologist - I also learned, and finally found out once in for all, that I do NOT have ADD or ADHD, but I have extreme Executive Function and other Developmental struggles that show up as what SOCIETY knows as "ADD or ADHD." I am SO happy and thankful my mother was strong, intelligent, and followed her intuition and didn't listen to the psychiatrists who tried to tell me and her I had ADD when I was younger because those medications they would have put me on could have severely damaged my brain, heart, liver, or possibly killed me...just because psychologists aren't trained in CHD specifically (because, I mean, who is besides us and our superhero parents anyway, right?), so be careful!
You MUST be your own advocate! (As I say all of the time), because doctors, therapists, psychologists, psychiatrists, etc. have NO ideas the EXTENSIVE trauma our brains have endured. It is even hard to get certain Neurologists to listen. There are SO many doctors who just don't want to believe that our brains are what they are because of the way we "look."
This is why I strongly advise getting a Neuropsychologist. I believe I have other blogs about this as well. I promise, it will change your life.
As many of us now know, CHD affects our brains as much as it affects all other organs.
Many of us have mild to severe ranges of brain damage, showing up as learning disabilities and other mental development struggles. Some of us even have mental issues that may mimic ADHD, mental illnesses, or other behavioral issues. This all stems from the way our tiny brains were wired, and the severe, constant trauma they endured from literally our first breath.
There are many factors. One being oxygen deprivation to our brains during our heart surgeries as infants, toddlers, and children. Another factor is the amount of times we have been on anesthesia, how many strokes or mini-strokes we have had, and the list goes on. Unfortunately in the eighties and before, it wasn't mandatory that instances such as every single small stroke we may have had during or after surgery be recorded, or even reported to our parents. I have also been told by CHD specialists children born in the eighties and before with CHD may never know what all went on in our OR's. We may have had strokes that even they didn't recognize because they didn't know to look for it.
Now as we continue to age into our 20's, 30's, and 40's, as the first generations of Single Ventricle Complex CHD's, it is important to teach your doctor about yourself and any cognitive issues you may have. It is helpful for the future generations and research as well as continuing your care.
Side note: Now, aside from CHD I came from two extremely energetic, bubbly people. So put CHD in a blender with those two?...And you get a non-stop talker and mover, loves to work out (kickboxing and punching the punching bag my fave), high OCD and anxiety, annoyingly happy, bubbles shooting out of ears when she's happy and flames fuming from her ears when she's mad.
So, what have I done my whole life with all that energy? I've been the funny kid, the fun friend, the overly-organized employee who gets promoted after a week for running things better than the manager, the manager who takes every shift I can get, the crazy friend who would do anything, the fastest runner (short distance races), the best softball pitcher and 3rd base, the party girl (in my high school & college days), the overachiever in every single aspect of my life, the girl that wants to know everything about everything and obsessively learns from various resources, the ruthless non-stop Advocate for CHD and abused women and children, the coach and soon to be Author of my own books I have spent 2 years writing, and overall - the girl who just never stops...until CHD makes me and I'm stuck in a hospital bed (again...there's always an "again") for crashing and burning, forced to recharge my batteries by getting revived with: rest, sleep, relaxation and me time, movies and cuddles with my boyfriend and furbabies, plenty of fluids and nutrients...then doing it all again!
Because it's worth it to me. I love my energy and I'm thankful for it. Sure I have a lot of developmental struggles and anxiety along with it and my brain sometimes moves like the Road Runners feet, but I'd take those any days to run circles around heart-healthy people and wonder, "why the hell is everyone so boring, and unmotivated in life?"
I just want to scream GET OFF YOUR SEATS PEOPLE, THIS IS LIFE! LIVE IT!! <3
Below this is a must read-truly...it is...This article from Cincinnati Children's is very informative and I'm proud to say it comes from the hospital that did all of my surgeries! I was the first HLHS child born there, in 1985, to our knowledge.
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