Brugada Girl ™

Isn’t that my calling card? Isn’t that what people love about my blog? That I let you inside my head and read about my roller coaster of emotions without holding back? One of the reasons people contact me is because they say I put to paper, what they are thinking. Some don’t share their emotions. Some are afraid to show them. Who wants to wear their heart on their sleeve? And ironically I am just like that. I am a VERY private person. I don’t have many friends. I only see and converse with family. Im friendly but Im not. I keep to myself. But when it comes to Brugada Im transparent. I show and write everything. Maybe its because its therapeutic for me. Or because this is like a diary. Or because it actually helps other people because Im writing what they are thinking. So here it goes.You may not like it and find it upsetting…

Today is the 2 year anniversary of being diagnosed. And Im hating today. It has nothing to do with the anniversary actually. For the last week Ive had a new surge of anxiety and fretfulness over my diagnosis. It waxes and wanes. Somedays I don’t think about it. And some days Im so sad about it and hate it with a passion. This week I detest it. Ive been thinking about having an ICD. Ive been second guessing it. After all, some people chose not to get one. Some people feel, if you haven’t had cardiac arrest yet, you shouldnt get one. Why? Because ICDs kill people. Yes you read that right. Yeah, yeah, they save. But they give inappropriate shocks, they kill you “mentally” ( try bonding with time bomb screwed into your heart) and now Im reading about how leads are recalled, fail, cause heart infections and you need major heart surgery to remove those leads. That surgery has killed people. Yes, Im in dark dismal mood so if you don’t want to continue reading or begin to be afraid of your ICD, don’t read on. I am being brutally honest.

Brugada kills right? It is lethal? But an ICD meant to save you, kills you as well. Or at least shortens life span and cause a whole rash of potential problems. So whats the damn point? Really. If I don’t have one, Ill die. Maybe. Maybe not. If I have it I may never need it but it can fry me to death? Get an infection? What are we supposed to do? Not get it, you are doomed. Get it you are doomed? Its some sick game of buying time but in the end you are not really buying time are you? I always tell people LIVE YOUR LIFE!! Don’t be afraid. But I don’t practice what I preach. I hate this syndrome. I hate this ICD. I don’t trust it. Its fickle and can either save me or kill me. Throw in the fact that doctors have varying opinions some say I need it some say I don’t. Like it not confusing and frightening enough. You need it! You don’t need it! It will save you It will kill you!. WTF?? Take it out. Turn it off. Anything…

Not to mention the mental aspect. I damn near had a nervous break down buying a Valentines card for my husband. I was over bundled because its super cold in Jersey right now but the store was roasting. I shopped and got VERY over heated right after dinner ( dinner always screws my heart up) My heart was pounding and screaming and I was light headed with no warning. All I can do is think I may pass out right there. I will get shocked in public. Will anyone give a shit? Or will some jerk just record me on their phone as I lay there and put me on their Facebook wall instead of helping. Maybe Im being dramatic but oh well. Its the truth isn’t it? You are at the mercy of strangers in a day and age where most people only care about capturing a picture or video in hopes of “likes” and “shares”. I got to my truck broke down and cried to my husband that I cant live like this. I cant live in fear like this. Only BrS patients know whats its like! Your heart is a stick of dynamite that blows with no warning an it doesnt care what you are doing. I know people who were driving, exercising, sleeping, eating, one went flying in their car into a lake, fainted out cold! Do you know what its like to live that ? Talk about becoming an agoraphobic because you never want to leave your house out of fear.You need someone with you to hold your hand the rest of your life. Or at least tranquilizers. Fear of your own body. Fear of your own heart. Like its a whole other person who will betray you any minute. I felt V tach during labor.My heart sped away and put me on the brink of consciousness and all I can do was cry and lose my vision because its going to do what it friggen wants to do. A runaway train. Old or young, poor or rich, famous or not. When your heart says “Im outta this dump!” Guess what?! There is nothing you can do. You are at its mercy. It controls it all. Yes indeed you better respect your heart because it has its own brain…

Im sure some of you are scared to death now because what I wrote. Im sorry for that. I love helping you all but Im only human, a scared one at that and need to vent. I hate BrS. I hate my ICD. It ruined my life and will eventually take it and I just have to sit and wait…