After I got out of a toxic relationship and had nowhere to go, I moved back into my mother’s house. I thought, “oh, I’ll move home and heal myself.” That whole you can’t go home again, is completely accurate. The place I grew up that was once a sanctuary for my soul felt foreign to me. I found myself desperately searching for a place that felt like home.
I soon realized that I could continue to search for “home” in a million places or people, and I would always be disappointed. That feeling of home, that sanctuary for my soul, would only be able to be found within myself. I had lost myself, and that’s why nowhere and no one felt like home.
I started the steps to finding myself again. To rediscover who I was after such a toxic relationship and life-altering events that I chose not to deal or cope with properly. I had a lot of healing to do. I put myself in therapy and began to face all the trauma that happened throughout my life. Some of that childhood trauma I had already healed from without realizing I was doing it. All of that medical trauma that my body held on to and my mind protected me from was my most significant feat. The relationship that left me with severe self-esteem and intimacy issues was a cakewalk to heal from compared to the damage living with heart disease has caused.
I started to set boundaries and work on processing the dark thoughts and emotions that came from the bad news. I began to truly understand who I was as an adult and after a lifetime of chronic medical issues. I found a sanctuary within myself. I found my sense of home. It took three-plus years and a fantastic therapist, but I was genuinely comfortable with myself. I had a strong sense of self. I was happy and content. I did not want to disturb it either. I wanted to ignore anything medical-wise that was going on because it threatened my peace. I was also against letting anyone in that could disrupt my home. I was heavily guarded and selective. Then things changed.
After multiple ER visits and failed medications, I could not ignore my health and the disturbance it was creating. While I felt like things were starting to collapse, I worked feverishly on keeping what peace I could within my home and sanctuary. I worked on what I could control. Then came along a guy. One that caught me completely off guard. Someone who had been right in front of me and I didn’t think twice about. I honestly wouldn’t have even given him a chance had he not shown he was interested in me. I was adamant on not wanting to be in a relationship.
Shortly after we started to date and moved more toward the serious side of things, my health started to implode. Heart surgery. A minor surgery but nonetheless another trauma-inducing situation. I was still guarded and working avidly on trying to let him in. Trying to be open about my mental state and my fears, but it felt like I was swimming against the current. I was trying to navigate familiar but rough waters and let someone help me swim. I only knew how to swim by myself.
Things started to calm down and return to our “normal,” and then the beeping happened. Late one night on the couch, I heard it. It’s crazy to think how a rhythmic beeping can completely derail someone, but it did derail me. Once I realized that beeping was coming from within my chest, I completely panicked. I was paralyzed with fear because no one told me what happened after the beeping. I was expecting to get shocked again, and I laid on the couch trying to prepare myself to be shocked again with tears soaking my face. That beeping lead to yet another surgery. Again a minor surgery, but it left me with more trauma. This trauma was my final push over the edge. This trauma and that damn beeping triggered my flight or fight mode. I haven’t been able to turn that flight or fight mode off since surgery. My nervous system is in a constant heightened state, causing me to be on edge ALL of the time. This is also known as PTSD.
Chronic PTSD is common when someone suffers constant medical trauma. I’d say ten surgeries in total could be considered constant medical trauma. Needless to say that my home and sanctuary I worked so hard to build has been absolutely demolished. I have been an absolute disaster since February. I have been on edge, filled with anger and rage. Things that would have never bothered me before are now setting me off. Then I have days when I can barely keep myself from falling apart. All the while, I’m trying to figure out my relationship and how to let someone else in, how to communicate what’s going on with my body and in my head. How to have a normal functioning relationship when right now nothing about me is normal and functioning. Anytime I’ve let someone, who wasn’t biologically programmed to love and care for me, see this extremely vulnerable side of me, I’ve been disappointed. As much as I loved them and wanted them there at that moment, after the surgery, when things got really tough for me, I was always let down. I was shown that it was easier to depend on myself. Creating a sense of hyper-independency.
Hyper-independence with the inability to ask for help and PTSD makes being sick and in a relationship so easy 🙄. And now my health is getting worse. Memorial Day weekend, I ended up in the ER. On my way to work, I had to pull over because my heart was going crazy, and I was so lightheaded I thought I would pass out. Then I ended up in the ER again a week later. No real answers and a ton of questions. Multiple conversations with multiple doctors later, I had an echocardiogram, wore a heart monitor, had a tilt table test, and downloaded the data from my new pacemaker. In the meantime, I had done my own research and could already tell from my symptoms what was going on. Then I got the call of, “you have decreased function in your right ventricle,” on my birthday with no further explanation. I had to wait a week for the final confirmation that my pulmonary valve was leaking again and causing all my issues, well, I think most of my issues.
Here I am, sitting in my house on my couch, three dogs and a boyfriend sleeping on me, and I’m happy. I’m happy at this moment. Happy that I have someone who is willing to be there when things are bad, to be patient with me when I’m an emotional basket case, and to ask questions to do his best to understand. I’m letting someone into a home that I no longer have. My body and my mind are out of my control. I’m once again in medical limbo. I know what’s to come, and I think that makes it worse this time. I know how bad things will get before they get better, and I know how hard the recovery is, not just the physical but the mental recovery. I’m going to have to rebuild my home, my sanctuary, and figure out life with a new valve and a new scar.
Trauma changes you. It re-wires your brain. Recognizing your trauma and working actually to heal also changes you. The amount I have changed and the person I’ve become is astonishing. Mental health is so essential for a taboo subject. Your trauma can spill over into your relationships. Identifying it so you can communicate it properly is equally important. Remember that you can look for that feeling of home in another person or different places, but you’ll never truly find it until you realize you are your home.
It has been months since I have sat down and wrote anything for myself. I haven’t written anything outside of school or cards. Writing is one of the best outlets for me. Honestly, I have not done any of the things I typically use as an outlet in months. I have been in such a weird place. I have been in this strange survival mode, and when I finally got out of that, I was in catch-up mode. Only to go right back into survival mode and to now find myself back in catch-up mode. It’s been a vicious cycle. I tell you what, survival mode really messes with your psyche. There were points over the past four months where I felt like a stranger to myself. I felt as if I were outside of myself looking in. I did not recognize myself. It had been a few years since I was in full-on survival mode, and I had honestly forgotten how dark that could get. It sometimes felt as if I was swimming against the current, and even though I was doing everything in my power to stay afloat and fight, there was no outward progress. When things get that dark, I tend to become overly critical of myself. Who knows why? Maybe my therapist could tell me, but I re-evaluate every little thing. I judge myself for everything. I overthink EVERYTHING. I have felt distant from everyone in my life since November. I felt like I was unable to really connect with anyone at all. I’ve been in my head over-analyzing.
Feeling like you can’t connect with anyone will mess with your head too. I have all of this stuff I want to say and want to discuss, but I’m distracted. I can’t engage properly, and then I felt as if everyone could see it. There were times where I would be talking to friends, and it just felt forced. Or awkward silences while sitting with my boyfriend where I thought he was thinking to himself, “what am I doing?” I know that I only felt these things. I was the one feeling disconnected. I was the one in a dark place and lost in the aftermath of survival mode. Recognizing this doesn’t make it any easier. The depression that creeps in isn’t talked about. There is no preparation for it, even if you know it’s coming. It’s serious. So severe that I stand in front of the mirror and cry over the changes in my body. When I know, I should be patient and give myself a break, but I legitimately have no control. Or when I am feeling disconnected and behave differently, all the while knowing I am acting differently. When you’re in survival mode, nothing matters but getting through the hurdle in your way. Everything hits you after the fact. The laying in bed worrying about complications in your surgery or that what if’s that could happen aren’t mentally dealt with until it’s all said and done.
I’ve sat awake at night recently trying to process all of this. I am trying to mentally claw my way out of this darkness that is in my head. The only positive that comes from this darkness and survival mode is that when you’re overthinking and criticizing yourself, you have these moments of clarity. Or what others may refer to as spiritual shifts, epiphanies, realizations, etc., whatever you want to call it. At least for me, I prioritize things. I get a chance to see what really means something to me. I can see how I need to shake off the fluff and focus on what matters. With my surgeries and 2020 being the mess it was, I’ve had points when I shook off the excess and tried to refocus. I’m currently in a position of refocusing and slowly getting out of my depressive state, and prioritizing.
Things I thought mattered now seem so ridiculous. All the things I thought I once wanted seem like a different life. The person coming out of this darkness is one I don’t entirely recognize. I’m now a much simpler person. The thought of, “what if I don’t wake up from this surgery” or “what if while my pacemaker is out or off I go into v-fib and that’s it?” All of those kinds of thoughts change things. Over the last 15 months, I’ve realized how much I want a simple life. I want comfort and meaningful moments. I don’t need to have the nicest and newest things. I don’t need a bunch of convenient friends. I’d rather have a few close ones. I don’t need the fluff, the excess, the materialistic crap. I want a quiet life somewhere where I can have all the dogs. Go on vacation when I want to so I can continue to broaden my horizons. I want a roof over my head, food on my table, and, honestly, dirt on my hands and the soles of my feet. I want more meaning that makes sense to me. I don’t care how it looks to others. All my tears in front of the mirror over new scars or a few extra pounds need to mean something more.
My body went through hell twice in ten weeks. My mind hasn’t come out of hell in the past four months. Making the changes to get me to the place I want to be mentally will be a process. I just want a simple life that when I lay in the bed before my 11th surgery, which will inevitably happen, and I think, “what happens if this is it?” I want to be content with my answer. I want to be able to say that my life has been all I ever wanted it to be. I don’t want to have doubt or wish I would’ve done things differently. I want to be able to walk away with my mind and heart strong enough to keep the darkness out. I don’t want to lose myself and avoid my outlets. I don’t want to feel disconnected. I want to look in the mirror and not have a meltdown because I’m bouncing back from surgery. I just want simple.
One of my goals for myself this year was to learn how to be quiet. I have a need to fill the silence with anything. Music, my voice, TV, anything that can cut the silence. The silence was always uncomfortable for me. It made the thoughts in my head that I was trying to ignore oh so loud. My anxiety would take over. With this constant need to fill the void that I felt silence created, I missed out on so much.
So, I decided that I would slow down and accept silence. I would practice the art of being quiet. I started being quite more when around my family. Not because I didn’t want to talk to them, but because I wanted to really hear them. You’d be surprised what you can learn about someone when you sit in silence with them. Or when you shut up and actually listen to someone other than yourself talk.
I didn’t explain this goal to anyone. I decided it was something I was doing for myself, and it was better left unsaid. When I got back from my trip to Hawaii with my sister’s family, she asked my mom if I had fun because I was quiet. This broke my heart a little. My sister thought I didn’t have fun because I was actually quiet for a change 🤦🏻♀️. I was so quiet because I wanted to be genuinely in these moments with them. I tried to soak in every little detail. The experience, the scenery (which will leave you speechless anyway), and all those little moments with them that I’ll never get again. I was quiet and present. I loved every second of that trip with them, but my seemingly sudden behavior change had my sister confused.
This year has been the perfect year to start the practice of being quiet. As we all know, this year has been a shit show. All of the unknown, drastic changes to normal everyday life, and forced quality time with your loved ones, known as quarantine, I honed my ability to be silent. I’ve finally mastered the art of comfortable silence. I no longer feel a need to fill a void.
This morning I wasn’t able to fall back asleep after being woken up. Most mornings, it’s easy for me to slip back into slumber, but today not so much. I laid in bed. The only noises were coming from my fan and Eleanor with her labored breathing. Staring at my ceiling, I was overwhelmed by the stillness. The stillness I tend to miss because even when being quiet, I’m usually moving or active in some way. I eventually moved myself out to my back patio. Sitting here now, I’ve listened to birds and neighbors awaken. I’ve watched the sun slowly creep into the sky. I’ve heard Eleanor and Herschey hunt for lizards. I’ve felt the air go from crisp and slightly cool to humid and warm. I soaked in all of this because I woke up with the weight of the world on my shoulders. I was lying in bed this morning, and the shock of yesterday had finally disappeared. My indifference was gone and an overwhelming heaviness was sitting in my chest. I felt the need to sit in silence and observe. I feel the need to be quiet more than ever now. The need to soak in every second of the next 5 1/2 weeks.
Yesterday during my weekly therapy session, my therapist and I talked about my health. This is usually the topic of discussion and one of the main reasons I put myself in therapy. I finally opened up a little deeper yesterday. See, I have a tough time truly opening up and letting people in. I’ve got these large walls I’ve built when it comes to certain parts of me, and my health is one of them. I talk about it lightly with others because if you get too “real,” it frightens people.
I see the fear and sympathy in everyone’s eyes when I don’t talk about it lightly. When I start to talk about the heavy stuff, people rearrange their faces, so I can’t see their discomfort, but it’s all in the eyes. Your eyes reveal all the things your face isn’t saying. That’s one of the reasons I focus on someone’s eyes when I first meet them. I digress, I can see the sadness in their eyes. I can see my friends and family getting upset. When I see this, my tough exterior goes into effect, and I stop talking.
I know that those who care about me are allowed to feel a certain type of way. They’re allowed to be upset and think things are unfair. Lord knows I do. I’ve cried what I could only imagine the amount of tears that could make up a large body of water. But herein lies the problem. Majority of them are thinking about how it effects them if something happens, not how this truly effects me. The problem with this is a dynamic has been created that’s even more unfair. I always have to be the strong one. I can’t show too much emotion because it triggers fear in those that care. If I stay collected and calm about it, then it must be okay, right? Wrong! Instead, it makes it very lonely for me. Those first few moments I’m alone after these exchanges, I break down. I get in my car, get to the end of the street and sob into my steering wheel. Or I wait until I’m home, then I sit in the shower holding myself while sobbing.
I’m starting to reach the end of my rope with this dynamic. I’m finally beginning to be brutally honest. When asked if I’m okay, I’m finally admitting the answer is no. I’m talking about my health more matter of fact and not sugar coating it. Maybe this is my way of coping or maybe it’s because I’m tired of feeling so alone in this. What I’ve learned over the last 5 years, is that people don’t want to know the truth. They want a version of the truth. For years I’ve been giving everyone a version of the truth and hiding this huge part of myself.
I’ve written about how I resent my health and heart about how I never wanted it to define me and how I’ve fought so hard to be someone outside of my heart conditions. Yet they consume me. If you’re ever with me and I’m looking off into space with my mind racing, you can bet that 98% of the time, I’m thinking about my heart and all it entails. It creates fear and anxiety that is hard to describe. It eats at me from the inside out. I don’t want it to define me or be my whole life, but it is what makes me, me.
Lately, I’ve been wholly consumed, overwhelmed, and distracted by my health. Every skipped or extra beat creates panic. Anytime something feels off, my mind immediately goes to the worst-case scenario. I’ve been trying not to get my hopes up because I’m yet again in a situation where everything in my life is barreling forward except my health. So, for the last few weeks, my therapy sessions have been all about my health. Yesterday my therapist asked me what I needed from others, and I honestly couldn’t answer the question. I don’t know what I need because, on a deep level, I always deal with this on my own. I don’t let anyone help me with the deepest darkest parts of it. I get told, “you’re so strong,” but honestly, what other choice do I have?
What do I need from others? I could use a conversation with someone where I can’t see the discomfort in their eyes. I could use an emotionless discussion—one where I don’t have to sugar coat it. I want not to have to worry about how this is affecting the other person for just one conversation. I wish not to feel a level of loneliness that consumes me even in a crowd of people. I want for someone actually to understand what it’s like for me. I wish for my therapy sessions to be about the common problems of a newly 30-year-old, like dating and developing relationships, making good career choices, or nonsensical problems.
Do you know when things are going too well? When it appears as if everything is falling into place, and you get that hesitant feeling—the one where you’re just waiting for the other shoe to drop. I’ve had that feeling for the past two weeks. In the last month, I’ve made some big decisions and put in motion majors changes for myself. I’ve created opportunities to better myself and further my education. I’ve created boundaries. I’ve been working on my self-confidence and my ability to say no without feeling guilty. I’ve been getting myself out of my comfort zone. I’ve been being upfront and working on honesty. I’ve been actively working on living for myself. It felt like things were FINALLY going my way. I had a tough time turning 30.
In the words of my nephew, “you act like a part of you died when you turned 30.” Well, I felt like it did. I had a preconceived notion of what 30 was supposed to be, and that’s not where I was at in life. I panicked. So, I made changes. I want my thirties to be more than my twenties ever dreamed they could be. All of these changes and all of this work I’ve been putting in seemed too good to be true. I had this foreboding feeling that the proverbial other shoe was going to drop. I kept dwelling on it and trying to place it. To figure it out ahead of time. To prepare myself. Then I had my “Ah-ha!” moment. My follow up appointment for my new medications was quickly approaching. This was it. My medication seemed to be working, and I have been the healthiest I have been in a while. I had recently had a few bad days. Days where I would wake up and feel off. It’s hard to put into words the feeling, but something about me was wrong. Those days I had some of my episodes. Brief moments where everything goes white. All of the sound disappears from the room. I get hot, and my head feels like a hot air balloon. It feels like I’m about to hit the ground, and my heart is going to burst out of my chest. Those days had diminished compared to before I started the new medications. So, I just knew this appointment was that shoe. This appointment was going to be the kink in all of my new plans.
When I brought my concerns up with others, I would get responses of, ”Think positive!” or ”you deserve for things to be going well.” I was trying to think positive, and I know I deserve for things to go well. I of all people know that I deserve for things to go my way. I’ve been the one who had to live all my bad days. So, I put out positivity into the universe. I kept telling myself this appointment was going to go fine.
The week before my appointment, I barely slept. My anxiety was through the roof. As much as I tried not to focus on the feeling of impending doom, it was all my mind would allow me to focus on. Here we are the day of the appointment and y’all the other shoe dropped. I guess I should always trust my gut, right?
Today as I sat in that room and learned that my medication was working against me, everything felt small. My heart is a complicated one, literally and figuratively. My options are incredibly limited, and there will never be a fix for me. I’ve known that there wasn’t a fix for a while, and I’ve been attempting to make my peace with it. So, today in the room, all I could think was the lyrics, “I’m not here for a long time. I’m here for a good time.” That’s right, George Strait, freaking lyrics from a George Strait song. When I used them in a joke to my mother and Nana, it wasn’t a hit. Apparently, using humor as a coping mechanism doesn’t go over well with everyone. I can’t accurately describe whatever it is I am feeling. Maybe a mix of emotions with a general sense of being overwhelmed. I resorted to retail therapy and eating my feelings this evening. Even mozzarella sticks couldn’t help subdue this. I was hoping today would put my mind at ease, and all it did was create more chaos. This chaos looks like more sleepless nights, more brooding, and more uncertainty.
I’ve been in my own world lately. A world filled with doctors visits, medical testing, sleep deprivation, and anxiety. I’ve been working extremely hard at not letting myself spiral down a deep dark hole of depression. When I say working extremely hard I mean doing everything humanly possible to keep myself from completely shutting everyone out and becoming 300 pounds while binge watching everything I can stream on my TV. I haven’t been the most hands on version of myself when it comes to my relationships. I have not been the most attentive friend, sister, daughter or granddaughter. The balance between keeping myself from being consumed by my anxiety and being present is a tiresome battle.
For the last several months I’ve traveled to New Orleans, Nashville and Pensacola to see doctor after doctor. Trying to find some rhyme or reason to why my heart and oxygen seem to do whatever they want. For 13 months I’ve been dealing with trying to get a handle on my tachycardia and all that comes with it. I have requested referrals to see specialist. I have tirelessly fought to find a solution. Recently I discovered my oxygen levels like to dip down a little too low. Hence my recent photos with a nasal cannula or an oxygen pack strapped across me. Also you can notice my increasingly dark circles under my eyes. All of this has been consuming. Wholly consuming. Mind, body and soul. It’s taken EVERYTHING in me to maintain my sense of humor and to keep my head above water.
I constantly feel like I’m treading water. I have days where getting out of bed seems like the hardest thing I’ve ever done. I have days when making my bed is my biggest accomplishment. Most nights I toss and turn, stare at the ceiling, and mull over every possible scenario that the doctors could throw at me. I’ll be in a room of people and not be present. I get lost in my thoughts at times while having a conversation with someone I won’t have heard a word they said. I get tired of talking about it and feel like everyone is tired of hearing about it all. Mainly because I never have answers. I keep having to ask off of work for appointment after appointment. I’m afraid to ask off for a mental health day and I’m needing those more increasingly. Even when I am at work it’s hard to stay on task, my mind is always elsewhere.
For those of you that follow me on social media and see all of my self care posts it’s because I am struggling. It’s because I need to be reminded that depression and anxiety are normal. That I need to be told from time to time that it’s perfectly okay to not be okay. So I post it to remind myself and because I know that someone else might need to be reminded that they’re not the only one going through it.
Last time I wrote I had just been called a “ticking time bomb” by a doctor. I then waited days to hear from a team of doctors that they all agreed. That I was too complex of a case for them. I was consumed with anger and frustration. My mood has since turned into one of worry, fear, and doubt. My weight is fluctuating. I’m stressing so much my skin is breaking out. Some days I stare into the mirror and think, “what if this doctor can not do anything? What if I have only two extreme options? One that results in more side effects and ailments. Or one that could result in paralysis and relying solely on a battery to make my heart function?” What do I do then? Do I risk the extreme? Do I continue to fight and be “brave” or do I let go? Give up and live life like I am in fact a time bomb?” Do I do that whole “live life to the fullest” thing that we all say we will do? Live with no regrets. Stop waiting for my life to happen after I get well and just accept that at any moment my heart could stop beating. That my defibrillator could go off and revive me until one day it can’t. Do I risk it and fight or do I live my life until I succumb to ventricular fibrillation? Hence my aloofness as of late.
These questions are debilitating. They weigh heavy on my mind, my soul and my physical body. My sisters recently joked about why I take such long showers. They said I was contemplating life in the shower and well, they are right. I get lost in the hot water and steam. I imagine scenario after scenario and how I will handle them. But now I am doing that all the time not just in the shower. I’m fighting for answers and fighting depression. I constantly get told by friends and acquaintances how they admire my strength and grit. But I feel like such a fraud when complemented by them because I feel anything but strong. I put up a great facade of humor and strength, but I’m struggling to not cry constantly. Every time someone asks about my appointments, asks how I am doing, or every time a stranger stares at me toting around my oxygen. I needed to break my facade and show everyone that I am indeed struggling. I am fighting for my life right now. A life I want to live and I live that I have been greatly blessed in. I have a very dysfunctional family that I wouldn’t trade for the world. They’re my biggest support system and despite not always seeing eye to eye, they have NEVER let me be alone in anything I do. I’ve also managed to be blessed on the friend front. I have somehow managed to find some of the most amazing individuals who support and understand me. They check on me regularly and love me endlessly. I haven’t been the best or greatest friend lately and ultimately I know everyone will understand and accept it. Depression and anxiety are a hell of a beast.
The whole purpose of this post is to let others know that the taboo of discussing your depression and anxiety is not okay. Tell someone what you’re going through. Don’t put up a facade. I can not reiterate enough that it is OKAY TO NOT BE OKAY!!! Go to counseling and don’t be ashamed of it. When someone asks “are you okay” say no. This post was not for attention but for help. I want my words and my story to be read by someone who also has days where getting out of bed seems like the hardest thing they’ve ever had to do. I want them to know that being open and honest about struggling is perfectly normal. I want my story and my words to help. I want people to know what I am actually feeling and going through. That social norms and expectations set by society and social media are not how we have to live life. That it’s okay to feel sad and to try to get help for that. That by taking care of yourself you will let others down and you don’t owe anyone an explanation when that happens. For those of you that sometimes feel like giving up, don’t. Keep pushing. Keep trying. Find your meaning. Your soul satisfying moments and relish those. Keep fighting that deep dark spiral that is depression even when you feel like you can’t. Take mental health days and don’t feel guilty. Cry in the shower or on the bathroom floor. Feel it and learn to let it go. Continue to move forward even if it’s at the pace of the tortoise not the hare.
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.
February is American heart month. For some that may not be important, but for me it is HUGE. While every month is essentially heart month for me, February is the month that brings attention to cardiovascular disease for everyone else. It is only appropriate that February was chosen for heart month with Valentine’s day being the day you’re supposed to profess your love and hearts desires for others(insert eye roll here). There are hearts, everywhere. So, why is February so important? Did you know that heart disease is the leading cause of death for men and women in the United States? Every year, 1 in 4 deaths are caused by heart disease and most of the time the first symptom is the heart attack. Did you also know that heart defects are the most common type of structural birth defect and occur in 1 out of every 125 births? Congenital heart defects are classified into 35 different types…35! Out of these 35 types, there are different variations and they all differ in severity. Heart disease is a BIG deal and commonly overlooked in one’s everyday life.
This month I acknowledge, with much appreciation, the fact that I was born with a congenital heart defect and that I live my life daily, battling the side effects of heart disease. I was 6 weeks old when my parents heard my pediatrician say, “Uh oh” whilst listening to my heart. I can not begin to imagine what that moment must have felt like as a parent nor will I ever know. When I was diagnosed with an atrial septal defect and an abnormal pulmonary valve the outlook on life with congenital heart defects was much grimmer than it is today. There was not a large number of adults living with congenital heart defects and today the community for adults living with CHD is growing! This is exciting because it means we all got a chance to fight, a chance to live longer and that medical advances have helped each and every one of us. But what about the side effects?
When you’re having your second heart surgery, first open heart, just 3 days before your 4th birthday, all anyone focuses on is getting you through the surgery. I don’t remember much from this experience. Mainly trivial things because at 4 that was all I understood. Dealing with doctors and being in the hospital was a normal thing for me. I remember making everyone laugh because I couldn’t get my bed situated just right. I kept demanding ” A little bit up! A little bit down!” I remember I had a few meltdowns over panties and socks not fitting right. I remember being poked and prodded all hours of the night and how much I hated it. I would scream and cry. I remember the playroom in the hospital and loading the car up to go home. I believe I got a gift from every nurse in that unit. We had a car full of toys and stuffed animals. What my parents and family remember are the risks. The gravity of the situation. They asked the questions, they sat around waiting for hours, they dealt with a child who didn’t quite understand what was happening. They dealt with the insurance and financials. I did what I had to do, I had surgery and I healed.
Things were great after my repair of my ASD and my valve being reconstructed. I flashed my scar to strangers because I was proud of it. As I got older I realized that probably wasn’t the best idea(Sorry fellas no more dress lifting). I grew up knowing I was different, despite not feeling different, and knowing I had limitations. I grew up with a scar right down the middle of my chest and the insecurities that came with it. Growing up with a special heart was normal for me. It wasn’t until middle school that it started bothering me again. I had yearly appointments with my cardiologist for check-ups. I would have an EKG and echo, I always requested to watch space jam during my echos because if you have the opportunity to watch space jam you do it. I looked forward to the visits for that reason. My heart never felt weird or abnormal to me, but 7th grade it started to. The only way I could semi-accurately describe it was as if my heart had butterflies and not my stomach. While I was a boy crazy teenager I definitely wasn’t in love and having butterflies of the heart. I went to the ER, wore Holter monitors like crazy, and went to my cardiologist multiple times. We could not figure out what was going on and as quickly as it started it stopped.
Fast forward to my junior year of high school and my heart starts acting crazy again. I wore a heart monitor the majority of my junior year. I am not exaggerating. I wore one long enough that I had permanent red circles on my skin. My skin was thin and raw in those spots. It took MONTHS for my chest and abdomen to look normal again. Not to mention those old school monitors sounded like something out of a sci-movie when recording and transmitting over a landline phone. It was a nice excuse to step out of class whenever I wanted, I didn’t want to distract the class or draw attention to myself. I don’t like drawing attention to myself, as hard as that is to believe. Wearing the monitors for a total of 6 months, yep half a year, paid off. We finally were able to see that I was having premature ventricular contractions as well as runs of tachycardia and ventricular tachycardia. Here is what I learned from that diagnosis. 1) Those are electrical issues in the heart. 2) There is no easy fix for them. 3) They were caused by my heart being cut into previously. And 4) this meant surgery. So I did what I had to do. I had an ablation the beginning of my senior year of high school. Nothing like ringing in the new school year with heart surgery. I was lucky this time because it wasn’t an open heart. It was a procedure done through my femoral artery and I would be out of the hospital the next day. I went to Jacksonville and had my surgery. If you don’t already know, you will soon realize, if it can go wrong it will when it comes to me. This surgery did not go as planned. It was a LONG procedure and they had to tape my arms above my head. You know how if you lay on your arm for too long it goes to sleep? Well, imagine having your arms taped above your head for over 6 hours. My arms were like noodles and all I could feel were pins and needles. It was pretty funny for my family and boyfriend at the time. I kept knocking things over and hitting myself in the face, but that is not all that went wrong. When you have an ablation you can not stitch an artery. You have to lay flat and let it clot on its own. Well, I woke up as they were removing my breathing tube. I felt them pull it out of my throat and mouth. This caused me to gag. I then proceeded to lift my head, turn to the side and vomit. Well, I continued to vomit while they moved me from the operating table to the recovery bed. Causing my artery to start bleeding and a nurse to hesitate and move my leg. I passed out. Maybe it was the drugs making me fall back asleep or the loss of blood, I don’t know. I woke up to nurses applying the pressure of their full body weight to my groin and sandbags on my groin. I had to stay in the hospital longer, I was bruised from mid-thigh into my abdomen, and this made my recovery even harder.
The surgery worked, for a while. I tried different medications after surgery to no avail. They made me feel worse and lowered my heart rate. The procedure did show us that my QT interval was slightly longer than normal, but it was dismissed as not a big issue, this will come into play later. From the age of 17 to 19, my life was as normal as could be. I graduated high school, started college, experienced young love, and got my heart broken. My heart hurt in a normal way for the first time. I moved away from home because I got my heart broken and it felt like the end of the world. After moving back home, I realized I moved for the wrong reasons (never move over a boy, ladies), I began to feel off again. The butterflies came back and brought lightheadedness with them. I went to my annual cardiology appointment and relayed my symptoms. An echo, EKG and stress test later, I found out I was complicated. Who knew? I had to try more medicines and again no luck. Some of them I had to stay in the hospital for 4-5 days to be monitored because my heart rate would drop alarmingly low. These hospital stays are when I became an expert on how to hook up an EKG machine. I repeatedly had to hook it up to myself when I felt anything cardiac related. After medicines failed we resorted to another cardiac ablation. It all happened quickly. On a Friday in May, we scheduled me for surgery on Monday. My sister, Devon, drove me over to Pensacola that Monday morning and cracked jokes about how I was fasting and she wanted to stop to get breakfast. I got her back by trying to hook her up with the Nurse Anesthetist assisting on my surgery. Fair, right? This procedure was not successful and I ended up throwing up once again. Resulting in me staying in the hospital longer with sandbags on my groin. Knowing this procedure didn’t go as we hoped for we started to explore my options and I was referred to a specialist in Boston to have a cryo-ablation.
8 months later in January, I flew to Boston. The day we arrived they had their first snow. The Patriots won the playoffs and were headed to the Superbowl, imagine that. The next day I was prepped for surgery. An old lady came into my pre-op area with a lady bic razor and shaving cream. Y’all, they sent this poor old woman to shave my bikini region. I don’t know who was mortified more, her or me. Needless to say, I did not need her assistance. My mom and dad were brought back and I told them about this and we had a nice laugh. I was given my sedative because I have to have one before surgeries to avoid panic attacks. According to my mom, once it hit me, my feet fell to the side, my flip flops fell off and I yanked my glasses off all the while saying, “Oh that’s good!” My surgery was semi-successful. I learned that some of my problem areas are on the outside of my heart and my pericardium was stuck to the outside of my heart. Therefore making it physically impossible to reach the areas without causing more harm. Not the best of news, but also not the most discouraging. Before my surgery, I told the doctors about my history of throwing up so we prepared for it this time. All was well and I was in the recovery bed in the elevator going to my room…then it happened. Once again I threw up and lifted my head whilst doing so. I arrived in the CCU with a hell of an entrance. My parents and grandma got pushed out of the way, nurses rushed to me, and I was being rebandaged and then came the sandbags. While I was at Brigham and Women’s in Boston I met with a cardiologist who consulted with mine at home about some things they had discovered.
One cardiac MRI, multiple phone conferences, and lots of deliberating later we realized it was time to replace my pulmonary valve. After consulting with my parents we decided we would aim for October of 2012 so we could get through the busy season, for everyone at work, and then focus on open heart surgery #2. Well, October was a great goal for a date, but we didn’t make it that far. Everything happened what seemed like overnight. I woke up one day and realized I was exhausted. Getting out of bed and making myself do anything was taxing. I was short of breath walking from my bedroom to the kitchen. I got in with my cardiologist for him to tell me that this is what happens, “One second you’re fine and the next you’re not” and the executive decision was made that in a month I would be back in Boston having open heart surgery. My sister swept me away to St Augustine for memorial day weekend as a sister trip before surgery. 3 Weeks later I am back in Boston 6 days before my 22nd birthday. I did get to attend a Braves vs Red Sox game at Fenway the day before my surgery and it was AMAZING! The morning of the surgery I stood in the shower and cried while I scrubbed my entire body with a special loofah and soap. I got dressed in my comfy clothes and put on a brave face. I knew more this go around. I was having my chest cracked open, my lungs rolled up, and my heart would be in someone else’s hands. I knew the risks and I knew the statistics. I was terrified which made me antsy and ill-tempered. I tried to focus on the book I was reading and not discuss my impending doom while waiting. When it was finally my turn, I was starving, nervous, terrified and asked for a sedative. They gave me propofol, which I knew was what Michael Jackson overdosed on, so once it hit I proceeded to sing thriller and dance by myself while being wheeled to the OR. At least I am entertaining.
I don’t have much memory from the first day after my valve replacement. The surgery was successful and long. I woke up a few times while in the ICU. The first time my hands were restrained so I wouldn’t pull any tubes or wires. The second time I woke up and they were removing my chest tubes, I felt the pain of the first one being pulled, the morphine had not kicked in yet. Then I woke up when they moved me into a regular room. I did not throw up until I attempted to eat a few days after surgery. My hunger got the best of me and I ordered far too much and too rich food. Throwing up when your chest is super glued together is not fun. Don’t recommend it. I was hunched over like Quasimodo, too afraid to straighten up my back, and I was in extreme pain. My first shower was difficult, as well as my first walk around the floor. I had minor difficulties after getting released. While watching Magic Mike with my Aunt and mom, I noticed my breathing was labored and it was not because of Channing Tatum. We ended up in the ER on the 4th of July with my lung partially collapsing. Once I got back home to Florida I went in for my checkup with my cardiologist and got admitted to the hospital with pneumonia. Other than that I healed and recovered fantastically. Things were great for 2 years. I had felt better than I have EVER felt. I did not realize how tired I was until I wasn’t. I could breath better, I had more energy, and I no longer slept for 10-12 hours a night. I experienced heartbreak again and let my heart hurt in normal ways. I found new love and experienced butterflies in healthier ways. I was finally living with no worries again.
Then the fainting spells and lightheadedness started. My heart would feel as if it was going to beat out of my chest, my head would feel like a hot air balloon, the sound would disappear, and everything would go white. I couldn’t breathe and couldn’t make it stop. It would happen whenever it wanted. I had no control, not that anyone has control over their health. I was scared, angry, and confused. After becoming a frequent flyer at the ER and many heart monitors later my doctors decided on another ablation. So July of 2015 I had another ablation. Things went well and I did not throw up!!! I did, however, get up too early. The nurses told me it was okay and I could go to the bathroom on my own. So, I wanted to be independent and walk myself from the bed to the bathroom. As I was walking I felt warmth running down my leg. I half-jokingly yelled out to my mom, boyfriend, and nurse that I was either bleeding or peeing myself. I couldn’t move my gaze down or I would topple over, so once I sat on the toilet I noticed all the blood. I panicked at started crying and yelling out. Everyone panicked. The next thing I know I had a nurse applying pressure to my groin while I finished peeing. That was awkward and mortifying. I swear these surgeries are filled with more terribly awkward moments for me than you would think. I was swiftly carried from the bathroom to the bed where I had 3 nurses rebandaging my leg, cleaning the blood off me and changing my gown. I was legit buck-naked in front of, easily, 6 people. It’s a good thing my dignity went out the window years ago. I went home the next day and recovered quickly. Two weeks after surgery I was required to wear another 30-day heart monitor. This heart monitor saved my life.
Day 30, 6 weeks after my surgery, I was leaving work and walking to my car when it hit me like a ton of bricks. Rapid heart rate, no sound, everything went white and I couldn’t breathe. I pressed the button on the monitor, leaned into my car, and slid down the side of it onto the concrete. I came to and felt fine. I got in my car and proceeded to drive home. On my way home the people from the monitor company called me to check on me and tell me they were contacting my doctor. I got home and ordered a pizza and made a bowl of cereal. I did not get to take a bite of the cereal. My phone rang with my doctor on the other end. We finally caught it. I was experiencing deadly rhythms of the heart. My heart wasn’t beating. It was fluttering. I rushed to the hospital in Destin and was escorted via ambulance to Pensacola. I was in the hospital for 3 days then I had my ICD placed. I had a foreign object permanently implanted in my body. It is noticeable, it changed my life, and I hated it. It was painful and the mental recovery worse than any other surgery. I eventually got used to it and life got back to normal. Once again experienced heartbreak unlike any other before and forgot about my arrhythmias. I was finally doing better and feeling better. 3 years after being implanted it charged and fired up. Once again my life was saved. Now I won’t go into extreme detail since I have previously written blogs regarding getting shocked, but this shock is leading me to face another difficult path of living with heart disease.
I finally faced my diagnosis of Long QT syndrome. There is no cure for it, at this time. Just last week I did my genetic testing to determine which specific form of it I have. There are 16 different types of LQTS and they all are a cause of a different gene mutation. Not only is this happening but I am having to deal with side effects from my aortic stenosis. In the last week, I have had 3 veins blown while having labs drawn, been to 3 different hospitals and had an echocardiogram done. I am trying to patiently wait for my results, but I am beginning to feel that level of tiredness, I once felt before, creep in. Sleep is all I think about. I am constantly short of breath and any exertion makes it worse. My arrhythmia and lightheaded spells are increasing despite taking medication. It came on suddenly and now I am stuck in limbo waiting for answers. I am once again not in control of my body and it BLOWS!
I am telling you about my long cardiac history because it is February. I am shedding light on what people living with congenital heart defects, congestive heart failure, and heart disease in general deal with daily. Not everyone has as an extensive history as I do. Not everyone is as complicated as me, but heart disease is common. You could have subtle signs and genetic markers. Go to the doctor and have a cardiac panel performed. Have a stress test, an EKG, or an echo done. Stay ahead of the game. Have it done once a year… Have it done in February. Take it from someone who has been cracked open, you don’t want to be the one on that operating table. Here is to cardiac awareness and to American heart month!