My Journey with CHD
CHB/NL, also known as #CongenitalHeartBlock in Neonatal #Lupus, and in the medical field a very rare or uncommon Congenital Heart defect. Congenital heart block (CHB) is thankfully a rare occurrence. It affects only one to five percent of babies born to women with systemic lupus erythematosus (SLE).
I was one of those babies, I was one of the babies that thankfully survived, thanks to the knowledgeable heart specialists and surgeons at the IWK, and I survived everyday life because I am a fighter and warrior, with a hint of savage hidden in there. I fought alone and hid the pain from pretty much everyone, everyday walked around with a smile and laughter and walked out the same, bullying never really phased me and I think the ones who tried quickly realized that, I believe the reasoning of that was I always had it stuck in my head that I’ve been clinically dead more then once and my mental strength can easily keep up with my physical strength and simply shrug the hate and bullying off after a bit.
I wanted too specifically talk about CHB and how it took not just a physical and mental block out of my life but also the good that comes out of it, the outlook that I have that I feel is very much different from someone who is healthier or someone who hasn’t seen the things I’ve seen or heard the sounds I’ve heard. And also how I cope day to day with the #Anxiety and PTSD. We hate too explain ourselves or at least I do sometimes, but I have too stop and think what the heck. These people truly don’t know what it’s like and want to learn, why don’t I stop and quickly educate them, and I have no shame in doing so, growing up it was very hard for me too explain what I have and how it effects my daily life, but now all I say to the ones who are wondering is simply just ask. I was always told “well you have pretty much lived through it all” but I haven’t, I’ve lived though my battles and have come out with a few scars but the scars (physical,mental and emotional) have mostly healed, unfortunately with what I have and how I am alive I must go through a surgery every 7 to 9 years, that one day brings back memories and a curtain flashback, a flashback of being wheeled into the OR and looking back to see my parents holding each other; watching me go through the notorious double doors. When I bring that up, people ask if that phases me, and the truth is I don’t let it. I’ve had more surgeries then I can truthfully tell you off the bat and ever since the day that vision stayed with me I’ve quickly developed trust in the doctors,surgeons and nurses.
CHB for me is like someone squeezing your chest really tight when you try and run a bunch I can feel my heart struggling to pump the blood, I can feel the air in my lungs struggling to enter and bring oxygen into my system. It is somewhat like breathing through a straw while your heart feels like it wants too explode and just stop at the same time, I get shaky and my lips turn blue, but luckily that hasn’t happened in a while. Surprisingly I am very active, I stay fit and stay pretty consistent at a healthy weight. I stay at a healthy and happy me, and I have proven no one will change that, if I am in a relationship or not, I will still be very active and I will stay at my healthy state, because it works. Sports sports and more sports with CHB. I live in Canada for the people who don’t know, and everyone knows our favourite sport. Growing up I wasn’t able to play Hockey, football, rugby or soccer. I played basketball for a bit, and grew up golfing with my Grandfather but the one thing I loved was biking, I grew up in a sport family especially with my Brother Mike.
Music is the big thing, if you haven’t already realized I live for music, it has saved my life. I started drumming when I was 4 and a half, I remember going up the road too a family friends house and jamming with them, then when I turned five my parents surprised me with a drum set, a CB junior set we got in Moncton from the one man Ive always gone to since that day to get my drum stuff, when I was in middle school A few friends and I had a jam band and would just hang out and play music at each others houses, in high school I played a little more on stage, here and there. The rest well most of you know, When I was going into grade ten I was offered a position at the boardwalk and Ive been there since, I started volunteering and hustled and I am still there. In grade twelve we had a big drama festival coming up and I was approached with the idea of a full 30 minute soundscape, I was just given a few run throughs of the play and a script to work off of and for five and a half months I built one of the best things till this day that I have made, won multiple awards at the provincial drama fest and the Atlantic festival then It was off over seas.CHB has its times of pain and struggling but it also has a ton of good in it, I learn everyday about new things, new people and get too meet new warriors I like too call my heart family. Why did I write this? Well last night I had a struggle, a sudden heart pounding while I was driving home from work,so I pulled over put my car in park, Took a few deep breaths and thought one thing. F**k CHD.
