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.
My writers block has been beyond awful lately. I’ve tried writing in different settings, with music, without music, after drinking a pretty full glass of wine, inside, outside and many other scenarios. I’ve felt rather uninspired. Earlier today I was attempting to write about accountability and after trashing 7 attempts, I gave up. I’ve had a few conversations with a dear friend, recently, on what my writing is to me and what I want this blog to be. I don’t want to be a fitness blogger, a fashion blogger, and I don’t want to be an “influencer”, whatever the hell that really is? I would loosely classify this as a lifestyle blog. If you read my writing you’re not going to find ways to be better organized, you’re not going to find the perfect dips to make for a party, and you’re not going to find the cutest new shoes that are a must-have. Y’all are lucky if y’all are going to see me in anything other than a casual tee shirt and shorts this summer. Instead, you’re going to find blog posts about the stuff that goes on behind the scenes in life, like holding yourself accountable, personal growth, mourning the loss of a loved one, health issues, dating dilemmas, and mental health. A lot of the issues people want to talk about but are scared of or don’t know how. I’ve finally reached the point in life where I’m not afraid to be honest. Where I’ve figured out who I am and I’ve accepted her in all her glory. The person I’ve grown into the past few years is someone I never realized I wanted to be, but couldn’t be happier that I am.
Now 15-year-old Madelyn had this, insanely detailed, picture in her head of what life would be like at 28. I had this image of me standing in my doorway of a cookie cutter house, with a baby in my arms, watching my husband and daughter play in the yard. I’d have a dog and a goldfish. I’d be insanely happy with a successful career. Obviously 13 years later I’ve missed every opportunity to have that life 😂. To be quite honest I am glad I did because I am not the person that would be content in that life. At one point, around 26, I had a moment of panic when I realized this wasn’t where my life was going. As happy as I am with who I am now and the growth I’ve made in my twenties, I have moments of self-doubt and panic. I have moments where anxiety grabs a hold of me and I feel out of control.
Today my anxiety reared its ugly head. Self-doubt crept in and I found myself on edge. I found myself asking, “what if I’m not good enough?” In those moments I could think of a million different things to make me feel unworthy. Unworthy of someone’s attention, unworthy of the job I want, unworthy of admiration, unworthy of anything. I found myself overthinking, something I do far too often, and could feel panic set in. I came home and cleaned. Usually, cleaning helps calm me down but no luck. I went to the grocery store and as I stood in the produce section I lost it. I couldn’t breathe and I could feel tears welling up in my eyes. I was the lady trying to put veggies in her cart with tears streaming down her cheeks. I’m sure I looked insane and I certainly felt it. As I found myself on the verge of a full-blown panic attack in Publix, I left quickly and loaded my car up. Now if cleaning doesn’t help then retail therapy usually does. My budget doesn’t allow for much retail therapy but I thought I’d try it before I reached hysterics. I walked into books a million and tried to pick out a book. Now if you know me on a personal level then you know I LOVE a bookstore and a good book. Yeah, I left empty-handed and listened to The Smiths my whole way home, if that doesn’t set the mood for ya then I don’t know how else to explain it. I decided to go for a run. Running is always a great stress reliever for me and I can usually clear my head. Pushed myself and got my heart rate up a little too high, my bad, only to find a tiny sense of relief. Now I sit soaking in a bubble bath, drinking hot tea, and attempting to write in order to feel better. Yes, writing on my phone in the tub not the brightest idea, but oh well. I need to express myself some way and this usually helps. 🤷🏻♀️
Y’all, I am FAR from perfect. I have days like today for no reason I get anxious, over think, and silently cry in the produce section. I have days where I stand surveying myself in the mirror thinking, “If only your hips weren’t so wide” or “If you could just lose that little fluff right here.” I have goals I am steadily striving for and I am not in the same place as many of my peers. My path is different and I’m okay with that, but some days I find myself comparing myself to my peers and I experience immense self-doubt. I have days where I have to go on a run in order to be able to think straight. Nights where I lay awake staring at the ceiling and wonder why I am in the place where I am. Everyone has anxiety at times or experiences self-doubt. We all compare ourselves to our peers, or over think. We all experience some form of body dysmorphia. And can find ourselves questioning why is this happening? Why now in this moment? Why me? But we don’t talk about it. We sweep it under the rug, we bottle it up, or we dismiss it in fear. Fear of being viewed as ”crazy.” I’m sure I’ll have people read this and think, “This bitch is crazy. She cried in the produce section at Publix on a Monday.” Yeah well some of us aren’t perfect.
I’m not crazy. I’m stressed and I’m human. I question if I make the right decisions. I’ve let others control how I have viewed my self worth. I’ve made mistakes and I experience anxiety. The thing is, I am not afraid to talk about it. Mental health is important. Mental health can play a huge role in your physical health. I don’t know why there is such a stigma regarding mental health when it’s something we all deal with daily?!
Y’all, talk about your shit. Don’t be afraid to put it out there. Get it out!
Now, since I’ve put my crazy on the front porch for all to see, it’s time for me to put on a onesie, drink some wine, and eat my feelings in the form of carbs. Y’all go on about your business people!
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!
As the year comes to an end and I’m getting ready for Christmas, I keep finding myself reflecting on how much happened this year. Did anyone else feel like January lasted 3 months and the rest of the year flew by in a matter of minutes? I know there are still a few weeks left until we enter 2019, but I plan on being busy. So now is my time to write.
As I entered 2018 I was in a strange place, personally not physically. I was living at home. Starting over and trying to heal and find me. My only intentions going into the new year were to fall back in love with myself and my life. I had been bitter, cynical and in an unhappy situation for far too long. No big “new year new me” bullshit. Just the realistic hope of moving on with my life.
2018 started for me in Port St Joe, Florida in a house that is no longer there. Golf cart rides, lots of champagne, sparklers on the beach, bonfires and me learning how to play poker with friends that helped make 2017 an interesting year. Hanging with these guys was the only way to ring in the new year. As this year closes it is safe to say I still have not mastered my poker face. I also still think that a New Years bonfire is the best way to spend NYE!
A whole hell of a lot happened in January. It felt like the longest damn month of the whole year. I found myself already getting angry because I was making the same mistakes as before. I kept thinking to myself, “What in the hell are you doing Madelyn?!” Maybe it was my Wednesday, Crestview lunch dates with Laurie that helped push me to realize that I didn’t need to lose sight of what I wanted this year to be or maybe it was the news that my Grandma Anne was taking a turn for the worst. Something happened at the end of January that put my ass in check and pushed me in the right direction, but I’m not exactly sure what. I also was told the news that my sweet sweet bestie, Lilly, was pregnant after years of trying. I had just had an appointment that delivered the news that 100% sealed my fate of never having my own children and hearing her tell me she was pregnant was one of the best things that could have happened.
Entering into February I had the chance to get out of town to celebrate my cousin and her fiancé. I gladly said, ”See ya, Destin.” That was some of the first one on one time I got to spend with my new brother Kyle. It was nice to talk about music, Star Wars, life and of course Devon’s driving 😂. While in Tampa my urge to ditch Destin started to get stronger. The restlessness that filled me on the ride back was almost unbearable. Coming home to find my grandmother had been told that there wasn’t much time left was almost too much for me to face. I found myself watching one of the most important people in my life welcoming my biggest fear and leave this earth as we entered March. The year was off to a terrible start and her death made me re-evaluate a lot in my life. I let go of the people and things that were holding me down and started to make plans to move forward the way I wanted.
March and April were filled with traveling. A bachelorette party in Orlando with tons of laughter. A road trip to DC and Virginia to celebrate two of my favorites getting married. All of the traveling, job switching, and new experiences made my restlessness grow, yet again. My urge to leave getting stronger and stronger each day. I finally registered for classes and decided to push myself to go back to school. To figure out a new path since nursing was a no go. I was working out again and beginning to feel like myself, finally. I had lost myself for someone else and I was still healing. I was becoming a better version of myself. I spent a lot of time with friends and my mom. I still wasn’t completely content with being alone. I celebrated my little sister turning 21, which made me feel incredibly old and helped her get over a breakup. There were some strong drinks, chocolate, chick flicks, nights in bed crying and laughing. As May started my stepdad and little sister were home for the summer and living at home was becoming harder and harder. My stress was at an all-time high. I was feeling suffocated. Summer was starting and my desire to be outside and never home was getting out of control. My cousin’s wedding and bachelorette trip came just in time. I was able to get away, relax and clear my head. I got to spend time in my favorite city and then spend a weekend with my dads family. Once again getting out of town only pushed me farther into restlessness. I was finally comfortable being alone and with my singledom. Over the past couple of months, I started writing more and putting myself out there. The words of encouragement were relieving. I finally felt like I found a new niche and felt determined to continue to see where it takes me. My decision to move was made and I started saving money.
I ended May driving through a tropical storm to spend Memorial Day in Tampa with my Jules. Ever since we met Memorial Day weekend in 2011 we have spent the holiday in the sun together. I was not about to let the tradition die. I received the best news when I got there, baby Fern would be arriving in December. My 7th memorial day spent with Julie was exactly what I needed. Sometimes you come across people that feed your soul in such a positive way and she is one of these people. Any time I get to spend with her I jump at the opportunity because she has a way of saying the right things when I need to hear them. Once again, getting out of town and clearing my head only made my desire to expand my horizons strengthen.
I welcomed my birth month with open arms. I was ready to say goodbye to 27 and dive into 28. Living at home was starting to get more and more stressful. There were too many people, personalities, and animals in a small space. My patience was nonexistent and my temper got the best of me. I am the kind of person that celebrates my birthday ALL month. Do some people find that annoying? Yes! Do I care? Ha, no! After one of my many celebrations, I came home and the littlest thing was the catalyst. I found myself at my breaking point. I’m not proud of it, but I screamed at my sister and stepdad. Lost my temper and called Devon. Devon is usually my voice of reason when I let my emotions get the best of me. She agreed that I needed to remove myself from the situation and environment I was in. So I made the move to get out of my moms and move in with a friend. I completely derailed my plans of moving at the end of the year. I had my 80s celebration and said goodbye Dani and Cj all the while being incredibly angry at myself. I found it hard to actually enjoy my birthday celebration and found myself reaching out to someone who only made things worse for me. My actual birthday weekend arrived and it wasn’t a weekend I was looking forward to at all. We finally had the service for my grandmother. I welcomed 28 and said my final goodbye. I was finally forced to face all of the emotions I swept under the rug when dealing with her death. Not being in the best place personally, I spent my entire birthday weekend crying myself to sleep. One of the most positive things to happen in June was Haley graduating nursing school. She had what can be considered the HARDEST 14 months of her life. She suffered significant losses and didn’t let them stop her. She studied hard and even in her most emotional moments kept her head up. Her strength, determination, and perseverance are definitely something to be admired. I’m beyond lucky to be able to call her my friend and being able to see her graduate brought me great joy in a time where I was feeling sorry for myself.
July and August flew by. I’m not sure anything productive even happened in those 8 weeks. I know I celebrated birthdays and pretty much-avoided responsibilities until school started. I did partake in a short 24-hour getaway to mobile with Haley. She took her nursing boards and passed like I knew she would. I signed a lease with Ashley. Committing myself to at least one more year here. It was a tough decision to make and I’m still not sure I made the right one. I promised myself I wouldn’t ring in 29 here, but I’m here until at least August 31st of 2019 now. I do have to give a huge shout out to all of those who helped us move. Also to Kim and Chris for letting me crash with them while I got moved in. I hope y’all are still laughing at me having to pee on the side of the house because I couldn’t get one of y’all to open the door 😂. I certainly am! By the way, I still need to get the dog apartment from you. The family did manage to pull off a surprise party for my grandmas 80th birthday. Spending time with them was definitely a highlight. I wish I remembered more from July and August. You would think it was me that got the concussion on the 4th of July not Alex 😂! Sorry Alex I had to, love ya mean it.
September was definitely eventful. I got moved into my place. School was in full swing. We had Lilly’s baby shower. With her due date approaching fast I sat down and wrote my first deeply emotional and vulnerable blog. I finally organized my feelings and wrote about my infertility. It was extremely humbling to have so many people share it, message me and thank me. I had no idea it would reach as many people as it did and it helped me see things in a new light. I finally was at peace with a future of not being a mom. Being a mom was something I had wanted to be my whole life. Now, after learning about my diagnosis, coping and healing from it, I can say that I am content with my infertility. Sometimes I still get sad but I understand that my life is meant to be different. I was still having a hard time with my commitment to stay another year here and I had not been out of town in a while. I was unfocused and feeling hopeless. I needed to get out and clear my head. I packed up for a weekend getaway to the Forgotten Coast in search of some mental clarity. I came back feeling refreshed and centered. September also brought a new opportunity on the job front. After a lot of delibertating, I decided to take it.
It was now October, my FAVORITE month of the whole year! It was filled with celebrating Devon’s 35th birthday. Tiffany and Andrew got engaged, FINALLY! Lilly gave birth to Ellie and it was quite the event. Ellie and Lilly gave us all a scare and I am ever so grateful that they both are happy and healthy. Hurricane Michael hit, caused devastation and put school on hold for me. I had a much-needed break that would come back later to bite me in the ass. I spent the month being a complete basic pumpkin and Halloween loving white girl. Family football weekend was a blast despite losing the game. We left at half time and went to a bar. Devon and Kyle celebrated their first anniversary that weekend and were true sports. I spent Halloween with my best friend and her munchkins. We were a bat family. Her 4 year old told me my butt looked nice in my leggings and completely made my month. It was honestly a wonderful month. I was the happiest I had been in a while. I let my guard down and November reminded why I don’t relax.
Then came November. Life was finally feeling right. I finally stopped holding my breath and relaxed. Then it happened. I didn’t derail my plans this time my health did. Every time I get 4 steps forward my heart knocks me 3 steps back. I spent the whole month feeling defeated. November was hard. I honestly don’t know what I would’ve done without my family. I’ve been scared and confused. All the doctors appointments, everyone driving me around, letting me vent and being an emotional crutch. I couldn’t be more thankful for my family. November was definitely the most challenging month of the year. I still don’t think I’ve completely wrapped my head around everything that happened. It wasn’t all awful. I got to celebrate baby boys. I had baby Bennett and baby Coles baby showers. Sweet Ophelia turned 1. Thanksgiving was great. I worked a solid 12 hours on Black Friday and the only reason I committed was because of Madison. My Herschey turned 7. I discovered my love for a night in with a onesie and face mask. I drank more water than I think I ever have and my dear friend Taylor asked me to be a part of her special day!
And now it’s December. Getting out of town, after I thought I was going to have to cancel my trip, was exactly what I needed. My time in New York was not long enough. Honestly, being in New York was the first time I’ve ever felt that comfortable in my own skin. Something about the City just felt right. I am so thankful for my hosts and being pointed in the right direction food wise and literally. Jesica is directionally challenged so having someone tell me to go left or straight was a HUGE help. I am so thankful Jes came with me. Her gypsy soul is undeniably similar to mine. Going to New York has definitely not helped my feeling of restlessness. My desire to get out of the worlds luckiest fishing village is at an all-time high. Half of me is tempted to sell everything I own and be irrational and move. The other half is rational and knows my life is filled with unknowns right now and I need to be responsible. I won’t pack my bags just yet. I’m going to finish these finals and papers. I’m going to shop for Christmas, way to wait until the last minute huh?! I’m going to welcome 2019 and hope that it’s a year of as much personal growth as 2018 has been.
So far December has been great. I’m slowly getting back into working out. I ran a mile and a half yesterday. I’m slowly accomplishing my mountain of homework. I finally am caught up on laundry. And I’m realizing just how much I’ve grown this year.
I owe a lot of my growth to my best friend Madison. I’m so proud of her. She works her butt off. She moms hard and she’s accepting help from her parents even when it hurts her pride. Being a single mom in school and working 40 hours is not easy. She’s grown so much this year and has pushed me to see qualities in myself I couldn’t see. Devon and Kyle who have made a point to include me in their big moments this first year of marriage. When I felt alone they both knew exactly what to say and do. My mom has been my rock. My safe place. She’s driven me crazy with her worrying. She’s made me laugh uncontrollably. My dad and stepmom have supported me without question and made sure I knew I would be okay when I thought I wouldn’t be. My aunts have all provided me with support and encouragement. My whole family has been a huge part of my personal growth.
I was asked to describe myself at the beginning of the year. As I answered the person stopped me. She told me I was describing myself based off of what I thought people wanted to hear. I couldn’t describe myself in the way I saw myself. It took me all year to finally be able to answer her question.
I, Madelyn, am first off a crier. I compartmentalize my emotions. It was something I mastered at a young age. I have an extremely hard time vocalizing and expressing my emotions to others. I cry when I’m happy, sad, anxious, angry, stressed, the list goes on. It’s one of the only ways I can let out my emotions. I am a music junkie. Not musically inclined at all, just obsessed with music. I’m constantly listening to music. Searching for new artists and songs. I listen to a little bit of EVERYTHING. I am the type of person that cries during certain songs. I am stubborn. I have a hard time believing in myself. I love hard. That doesn’t mean just in relationships. I love hard when it comes to friends and family. I will put others first and neglect to take care of myself because of this. I’m still learning how to say no. I stay alarmingly calm in stressful situations and this can be contributed to my health. I want to be every animals mom. I love animals and if I could I would rescue as many as I could. I now know what I will and will not put up within a relationship. I’ve had too much of my time wasted and I have too much to offer to be considered an afterthought. I believe in monogamy and casual dating is not for me. I am incredibly awkward. I rarely say the right thing at the right time. I constantly am putting my foot in my mouth. I’m working on holding myself accountable. If I want change then I have to be the change. I don’t think I will ever be a morning person. I am not healthy. I may never be. I am different medically and I’m learning to accept it. I laugh at my own jokes and use humor as a coping mechanism. I hate my body and I’m trying to learn to love it. I always want to eat, even if I just ate. And I finally love myself as a person again.
All year I’ve worked on figuring out who I am. 2018 has been a HUGE year for me. Being able to sit here and write about it has been a big step for me. To actually hit publish will be even bigger. Opening up and being vulnerable isn’t easy for me. I’m going into 2019 with the hope that I expand my horizons even more. I hope to welcome 29 and leave this town for my thirties. I hope to continue writing and finding my groove. I hope to keep an open mind and continue to grow into the best version of myself. I hope to finally tame these damn eyebrows and continue to feel comfortable in my own skin. I hope to learn how to say no and work on the right balance of selfish and selfless. I hope for more chances to travel. But most of all I hope for answers, that my heart will not throw me curveballs, and some stability medically.
It has been exactly one month since my defibrillator went off and life has certainly changed. I have yet to feel 100% like myself, physically and mentally. Life is getting back to normal, but it is a new normal. It is filled with unknowns, upcoming doctors visits, medications and lots of restrictions.
When I wrote about the experience of my defibrillator going off I had yet to see my Electrophysiologist and Cardiologist. I had an idea of what had happened and I had expectations of what I was going to hear. I figured I had experienced some form of arrhythmia and my heart was beating too fast for too long, because this is something that happens often. I did not expect to hear that I was in a normal, healthy, regular rhythm and then I wasn’t. I went straight into ventricular fibrillation. No arrhythmia leading up to it. No intense physical activity. No medicine to cause it. My heart just decided to stop working correctly. To stop actually beating.
I always knew that this was a possibility. I’ve listened to the doctors intensely, I’ve done proper research, and I’ve paid attention to my body. It’s always been there in the back of my mind. This could happen, but you never think it will actually happen to you. I’ve been unlucky with my health, but I’ve also been lucky. Things could be much worse. I tell myself this all the time. When the doctor told me I went in v-fib for no particular rhyme or reason, I couldn’t wrap my head around. That experience I’ve previously described, where everything disappears around you. You can’t process any new information because your mind is still trying to comprehend that information you were told. Yeah, that happened upon hearing that.
I want answers. I want to know the reasons why. I want to know how to completely avoid getting brought back to life again because I don’t want my heart to just stop working. I am having a hard time accepting that my diagnosis does not have a cure, yet. It may never have a cure. I don’t want to “maintain” it. I want to fix it. It’s unbelievably frustrating. Next month I will be doing genetic testing to get more in-depth answers as to which specific form of Long QT syndrome I have. I’ll see a new specialist for a 2nd opinion. I’ll get a new pair of eyes to review everything and see if they have anything different to say. I’ll see if this new medicine is the right one. So far it’s worked better than anything else. It’s insanely expensive and breaks my face out. It is better than my heart not working right, so I can’t complain too much.
I’m trying to deal with the unknown, the frustration, and the seriousness of my situation with a light attitude. I keep cracking, what some may consider inappropriate, jokes about being in a dead sleep. Or how I can’t say yolo anymore. I have to find humor in this in order for me to cope. I’m still struggling to accept that I had a sudden cardiac death event and my defibrillator did its job. I have no words that can describe how glad I am that this machine, that I never wanted in my body, worked. The nightmares that I have had about me not waking up have been hard to shake. I try not to focus on all of this and continue to live life semi-normally. It’s hard. It’s hard to not be anxiety-ridden and terrified that at any moment it could happen again. It’s hard to not dwell on it. Sometimes I want to talk about it to process it and sometimes I don’t want it brought up at all. I want just a few hours where I can pretend that I’m normal, health-wise. We all know I’m not normal, I’m a bit peculiar. Haha!
The psychical stress this caused only lasted a few days. However, the emotional and mental stress is seeming to last indefinitely. I know some people may think, “So what you got shocked. People get shocked by defibrillators all the time.” To some, it may not be a big deal, but to me it is. I convinced myself that I was doing better and that I was fine. Nothing had happened and it probably never would. I convinced myself I was healthy and normal. I’m having to accept that I’m not. It’s a struggle for me. I’ve struggled my whole adult life with it. All I’ve ever wanted was to be healthy and normal. I don’t want to face the fact that I’m far from it.
Getting back into a routine has been difficult. I’ve had to rely on others for so much and I had to base my life off of someone else’s schedule. I’m finally able to drive myself around town again. I’m still supposed to take it easy on exercise. I’ve re-evaluated how I approach life now. I have a different outlook. I didn’t completely realize how precious our time on earth really was. Time is fleeting and I have now rearranged my priorities. Working my butt off and being successful will always be a goal but I will no longer let it consume me. I don’t care if others don’t understand why I choose to do something. Making memories and actually enjoying my life is now more important. All the stress doesn’t help me. I have far too much unknown with my health to not make the best of my time on earth. That is why I didn’t cancel my trip to New York despite all that’s happened in the last month. I may not have this opportunity present itself for me again. I do not know what is in store for me next month.
Life after the shock has been pretty much what I expected. It’s been a rude awakening and it’s caused my life to do a 180. I’ve grown in ways I didn’t expect. I’ve learned a lot about myself in the last month. For me, it’s been the true definition of an aftershock. A smaller earthquake following the main shock of a large earthquake. My life is in disarray after working so hard to get my shit together.
November 1st is always a strange day for me. It’s the day after my favorite day of the entire year, Halloween. It’s usually a melancholy day. I have to take down all my decorations and all the spooky movies aren’t playing 24/7. This year it was different.
Thursday, November 1st, was an exceptional day for me. I finally had a night of restful sleep. I woke up not feeling tired. I had a half day at work. I came home took down my Halloween decor and cleaned the house. I felt great, actually the best I had felt in a long time. My roomie and I were actually home at the same time, so I invited our friend Kati over and made dinner.
I hadn’t seen Kati in awhile. She sat in the kitchen while I worked my magic and we caught up. She complimented me on how well I looked and how it was the first time, in as long as she’s known me, that I’ve been this together. She was referencing the fact that I was finally putting myself first and was being myself. This compliment meant a lot to me. As this is exactly what I’ve been striving for the past year and a half. This is what happens to me though. Every time I have things together and I’m moving in a positive direction, the other shoe drops. I live my life in fear of the other shoe dropping. I’ve learned that it always drops.
After Kati left and Ashley went to bed, I decided to lay on the couch and watch the new Sabrina. I fell asleep on the couch because I did the whole, “one more episode” thing. I was woken up at 3:30 am. 3:30 am my defibrillator went off. What actually happened I am not sure I can describe accurately. To say that it was single-handedly the most terrifying thing that has happened to me would be an understatement. All I can really remember is feeling as if a 1000 pound anvil landed on my chest while getting struck by lightning. I legitimately flew up and forward off the couch, while clutching my chest. I couldn’t breathe. I was gasping for air. I couldn’t think. I had no idea what was happening as I sat in the floor hyperventilating. Finally, I calmed down and could form thoughts. I realized that I must have been shocked.
See in the 3 years and 2 months that I’ve had the defibrillator it hasn’t ever shocked me. It’s charged to shock me but my pacemaker managed to pace my heart into a normal rhythm. There was a time or two I thought I might have been shocked, but boy was I wrong. I can’t even begin to imagine what that would be like if I was awake. Nor do I ever want to experience it.
I wasn’t really sure what I should do after being shocked and I wasn’t in the right state of mind to make any decisions. Naturally, I called my mom. Why? Because Karen knows what to do 97% of the time. My mother came over and I sent a transmission from my pacemaker to my EP specialist. I wasn’t sure if I should go to the ER or not. My doctors have told me previously that I don’t need to go to the ER unless I get repeatedly shocked. I decided to wait it out and see what my doctor had to say.
I don’t get to see my doctor until Friday. However, whatever he saw from my transmission made him take my driving privileges away and tell me that I am at a high risk of getting shocked again. He informed me that if I feel off or bad in any way that I need to go to the ER immediately. He also put me on a medicine I had been on previously and had issues with, but despite the side effects it does its job. He put me on the max dose 3x a day. Whatever he would rather discuss in person vs over the phone, has me freaking out. My anxiety is at an all-time high and part of me is too scared to go to sleep. I have barely slept since it happened. I know it’s silly that I’m not sleeping and sleeping didn’t cause me to get shocked, but I can’t help it.
The reality of what happened to me is slowly setting in. I have mixed feelings and in a way don’t know how I feel about it. I went to the ER on Friday because I didn’t feel right. I’ve felt off since it happened. I still don’t feel like my normal self. I spent a few hours with needles, IVs, heart monitors, and EKGs to be sent home to rest. I realize that had I not had this device that I likely wouldn’t have woken up. That my life could have been only 28 years long. That realization freaks me out. I’m so thankful that my defibrillator did its job, but I can say that this has been the worst experience of my life. The mental and emotional trauma as well as the physical. My left side is incredibly sore. Moving my arm, neck, or laying on my side is painful. My chest is sore to the touch. I’m slightly bruised from my neck to ribs.
Saturday morning I stood in front of my bathroom mirror staring at my reflection. I stood there and looked at my bruises and realized my left breast was slightly swollen. All I could do was tremble and cry. I cried while I ripped off my leads from the ER the night before. I cried as I slipped into a hot bath to wash the sticky residue of tape and monitors off of me. I cried because I’m scared. I cried because I’m overwhelmed. I cried because the reality of it all hit me. I am not normal.
I have got comfortable with my device. If anyone asked me about my heart then I would break it down as simply as I could. I tell them, “Yeah, I have it but it’s never gone off. I live a seemingly normal life. I’m good for now.” Well, that good for now is over. I have a feeling my “seemingly normal” life is about to be completely derailed. My life is going to do a 180 yet again. This experience has already changed me. I have been wanting to write a series of blogs breaking down the nitty gritty details of growing up and living with a legitimate broken heart. I had started writing the first one after I wrote about some of my experience with infertility. The feedback I received from that blog was unexpected and humbling. It was amazing the messages I received, the shares it got and I’m still hearing from strangers about it. So I figured why not really break this heart down? Why not put my story out there? Maybe just maybe my story can help someone. I didn’t really want to write to sort out my feelings for this scenario. Actually, I hoped I never would.
Yet, here I am writing to sort it all out. To get it out of my head. I sit here typing while feeling defeated. I’m trying to sort out how I actually feel and how I am physically doing. I’m trying to not stress or worry. I’m trying to tell myself that it’s okay, I’ll be okay. The other shoe always drops. For all of you asking how I am doing the answer is I don’t know. I’m sore, tired, confused and a little discouraged. I still don’t feel good and every little PVC, skipped beat, muscle cramp or shallow breath has me on edge. I just want to be normal. I want to not have to deal with this. I really want to get out of the house and not talk about it. I want to go for a run to let my frustrations out but I’m too damn scared. November 1st was a great day and it was normal. November 2nd, however, was not.
**Warning!! This post is an extremely personal post.**
Here I sit with one of the best friends anyone could ever have. Through out the years this sasshole here has been one of my rocks. I love her more than words could ever express. As you can see Lilly is about to pop. I’m impatiently waiting on Miss Ellie to make her arrival. I keep trying to get Lilly to try anything to make herself go into labor. By the time I post this she could have had her, but more on that later.
Okay, why am I posting about Lilly being pregnant? Well, Lilly tried for around 3 years to get pregnant. She tried everything. One day, last year, we were on the phone playing catch up. Sometimes we will go a while without having a real conversation. She told me that her doctor had informed her she was not ovulating. If you don’t ovulate then you’re not getting knocked up. It’s that simple. Her doctor had pretty much given up hope. Lilly was feeling defeated. I had stopped asking about how “trying” was going by this point, because I knew if she wanted to talk about it she would. Lilly needed to talk to someone about everything. About the “you may want to consider adoption” recommendations and the “you’re probably not going to get pregnant” conversations with the doctor. During that catch up call I knew Lilly understood.
I was 20 when I decided to see a new gynecologist. I had been having a lot of issues with my period and went an entire year without one. Clearly I wasn’t pregnant and I knew something wasn’t right. I did blood work and had exams done. At my follow up I was told I either had poly-cystic ovarian syndrome or premature ovarian failure. I had just taken my entrance exam for nursing school and knew enough medical jargon to have an idea of what was being thrown my way. My doctor told me she wanted me to see an endocrinologist for further testing to determine what exactly was going on with me. I constantly have crazy diagnosis’ being added to my list of ailments. I am no stranger to being the difficult patient. In my appointment with the endocrinologist I was told, “You’re the youngest person I have ever seen with Ovarian failure.” Not premature ovarian failure, but ovarian failure. These bad boys had stopped working fast! When I heard those words it was as if all the air went out of that exam room. I couldn’t hear a word he was saying and kept telling myself, “Keep it together damn it! DO NOT CRY! Not here and not in front of him.” From there I was told children were “unlikely” and I needed to see a fertility specialist to determine further. I remember in the elevator ride my mom put her arm around me and asked if I was okay. It took everything in me to choke down the tears and sobs I was stifling. I forced out the words, ” I don’t know.”
I had to wait weeks to see the fertility specialist. I had to have a ridiculous amount of blood drawn beforehand. I had weeks to try and prepare myself for the worst. My sister, Devon, went with me. The experience I had with that fertility specialist was AWFUL!!!!! Keep in mind, I am 20 years old and in the last 10 weeks I had found out all my hopes and dreams of having children were quickly fading away. That doctor was insensitive, rude, and nonchalant. He told me in his office, ” All of your levels are low or non-existent. You aren’t producing eggs. Your ovaries are small. The chances of you ever getting pregnant are less than 0.1%.” Just like that. No cushion for the blow. Devon started in asking all kinds of questions. Attempting to get more information and detailed answers. I didn’t hear a word they were saying. I was repeating to myself, “Don’t cry. Don’t cry. Don’t cry.”
The whole way home I stared out the window. Devon tried talking to me and I can not even remember what about or if I was responding. That news, that diagnosis, those words still echo in my mind. They haunt me. The depth of the wound those words created is not something I can explain. It is not something you can truly understand until it is you. The kind of pain that comes along with it. Gut wrenching doesn’t even begin cover it. Possibly it’s soul crushing? It changes you. It isn’t something you ever get past. You accept it over time. You learn to live with it. I have to explain it to people more than you would think. “Oh no I can’t have kids.” They tell you oh you can try invitro or hormone injections. NO BOBBY SUE I CAN NOT! People don’t know how to react and always want to give you advice. I know it is a natural response. I get told how sorry someone is for me. Having someones pity is equally upsetting. Then there is the factor of dating. I feel obligated to immediately tell someone if they start showing interest. I know that for some it can be a deal breaker. They want to have their own kids. Hell it was a huge deal breaker in my last relationship. He was fine with adopting when we first started dating, but over time he decided he wanted to have his own children. After 4 years he told me that even if we would’ve worked past all our other issues, “It would never work because you can’t have kids. I thought I could get past it, but I want my own flesh and blood.” In that moment I may have thought about murder or crawling into a hole and dying.
I have slowly come to terms with the possibility that I may never be a mother. Do I want kids and a family? HELL YES! I would give ANYTHING to be able to grow a child inside me, experience birth and raise kids. Kids that have my eyes or my laugh. Be able to make my sisters an aunt. Letting go of that dream has been one of the HARDEST things I have ever had to do and I have overcome a lot.
So, Lilly calls me and is talking to me about her journey with infertility, because I understand. I know what she is feeling. You feel as if you have failed as a woman because you can not do the ONE thing women are supposed to do. I realized while talking to her that someone, I love and who loves me, finally understood what I was/am going through. Finally! Now, I never wanted for anyone to be able to understand. I do not wish infertility on any woman. It was comforting to be able to have a conversation with Lilly and not have to try to explain myself. We sat on the phone and had a lengthy conversation. I listened while she vented and I tried to give her the best possible advice I could.
Fast forward to February of this year. I am at work and Lilly calls me. Lilly knows I am at work and wouldn’t call unless it was important. I dip away to answer, a little concerned, and Lilly asks me to sit down. “Madelyn, I am pregnant!” Hearing those words and the immediate wave of shock mixed with happiness. I cried tears of joy. Once we hung up it hit me. Lilly was no longer in the boat with me. I felt sad in a way. I sat in the bathroom and cried for myself. Every time a friend or loved one tells me they’re pregnant, I am overwhelmed with joy. Of course I am happy for them. Its later that the envy sets it. There is a slight tinge of jealousy and then self pity. I let the tears flow when I am alone. I don’t mean to be envious, jealous, or have self pity. I don’t want to, but sometimes you just can’t help it. Once I “cry it out” I am fine. I watch them experience pregnancy. The gender reveal, the nesting, and the birth. It is such a beautiful thing. Lilly’s pregnancy has been different for me than my other friends. It has been a little more personal because of what we shared and what she went through to get here.
And now she’s just waiting to hold Ellie in her arms.
Infertility is devastating. To all those women whom are struggling to get pregnant, whom have had miscarriages, whom are going through hormone therapy, and whom are coping with the diagnosis of infertility….YOU ARE NOT ALONE. It’s okay to feel defeated, to feel like you failed, to feel sorry for yourself. It is okay. Take it one day at a time. Process it in your own way and at your own pace. Just remember that while it hurts, you will be okay. You’re stronger than you know.