Sick and tired of being sick and tired…

I would like to know what it is like to not be complicated. To not be so completely complex that you feel like you have no control over your own body. To be genuinely healthy and to not live in fear. I was asked the other day what my main concern was with all of the electrical issues going on with my heart. My answer was simple. I fear that I’m going to go into V-fib and be shocked and hurt myself or someone else. I’m afraid it’ll happen when I’m driving and I’ll cause an accident. I’m afraid it’ll happen when I’m awake and alone and I’ll fall hitting my head or hurt myself worse. Most of all I am afraid that there is no solution to my particular perplexing issue and that it could be my demise.

My whole life I’ve been rather challenging. The punishment was always worth the crime as a child. I always pushed my limits with my parents. I tend to tell the truth when people aren’t ready or used to it. I’ve been an ever-evolving person. I’ve had many stages in my life and I’ve only recently really come to know who I am as a person. My emotions have always been complex and so has my personality. I now appreciate my peculiarities and obscurity. Besides my challenging and evolving personality, my health has been a whole other beast.

While I have made it well known my heart has always been far from normal. It’s been something I’ve fought against and resented my whole life. I didn’t want it to define me and that’s exactly what it has done. It’s what makes me who I am. It’s consuming. While all of my friends and family would describe me as strong because of it I feel completely at its mercy. It started out abnormal, which to me is kind of ironic because I feel like I’m a little anomalous as a person, but it’s grown to be quite literally one of a kind. My particular malfunction in the heart is not a structural problem anymore. I’d kill to go back to my valve being the only serious issue. An easy answer and an easy fix. Structural issues of the heart are simpler, but no, I have to continue to be challenging.

A lot of you are not in the medical field and don’t know medical terminology and don’t exactly understand how it all works. Your heart has an electrical system that makes it beat correctly. That lub dub you’re supposed to hear occurs because of the electricity flowing through your heart. My heart, however, likes to have premature ventricular contractions(also known as skipped beats) at an abnormal rate. It also likes to go into ventricular tachycardia, which means my heart beats WAY too fast. I just learned the other day that one area of my heart was beating at 300 beats per minute during one of these spells. When this happens my heart feels like it’s beating out of my chest. Also when this happens my heart gets stuck in this rhythm of beating too fast to actually pump. When this occurs I am not getting oxygenated blood throughout my body because my heart can’t efficiently pump it out. When it’s stuck like this the muscle then begins to spasm and not beat all. That is known as ventricular arrhythmia and ventricular fibrillation. My pacemaker is designed to try to pace my heart back into a normal rhythm and when it cannot my defibrillator kicks in. If I didn’t have my pacemaker/defibrillator I wouldn’t be here today. I have had at least one spell of ventricular tachycardia and arrhythmia every month this year. I’ve had more but there hasn’t been one month without. I could have died at least once every month this year without my ICD(implantable cardiac device).

Finding this out and being told just how severe and serious of a case I am has been absolutely overwhelming. Honestly, there isn’t a word to describe the emotion I am feeling. I knew it was serious and I know that I downplay it to everyone else, but I can’t anymore. I can’t pretend I am okay and that I am normal anymore. I can’t mask my fear and uncertainty anymore. It is so exhausting physically because of the arrhythmia and the high number of PVCs I have regularly. I am extremely symptomatic with it all and it physically drains me. Also, being so emotionally concealed and strong for everyone else is beginning to take a toll. Completely relinquishing myself to the fact that I am not healthy and will never be medically “normal” is proving to be difficult and incredibly depressing. I’ve got a lot of uncertainty ahead and it’s not going to be easy. From starting a medicine with a black box warning label and severe side effects to accepting that there may never be a solution. It’s going to be a tough journey with a lot of ups and downs.

To everyone that has reached out and to everyone that has respected the fact that I am not ready to talk, I thank you. I have a lot I need to process still. Emotions are all over the place right now. But I appreciate every one of you that is in my corner, thoughts, prayers, positive vibes and listening ears, you all mean a lot. I have some of the BEST friends and even better family.