Hey y’all, first I want to thank you for taking the time to check out my little corner of the Internet. I’m new to this blogging thing. I am currently back in school for journalism. I am a beach babe on the emerald coast. Dog lover 🐶♥️. I have heart failure and I’m trying to not let it define me as a person. I love to read, cook, travel, and anything to do with music. Hope you enjoy what I have to put out into the world.
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!
Here we are in April. Spring is in full effect and with it, change is in the air. Something about warmer weather, April showers and longer days makes me feel like all things are possible. Many exciting things are happening this month; Game of Thrones, Easter and I’m getting in with a new specialist to determine if surgery number 9 will be necessary. One of the biggest things, for me, in April is the week of the 21st-27th.
The week of the 21st-27th is National Infertility Awareness Week. World infertility awareness is in June, but I wanted to address it this month instead. Infertility affects men and women. 1 in 8 people suffer from infertility of some sort and only 15 out of the 50 states have insurance coverage for it.
If you’ve followed my blog posts, or know me personally, you know that I suffer from infertility. I suffer from ovarian failure and wrote about it back in September because one of my dear friends, who had a VERY hard time conceiving, was finally about to give birth and my sister had just told me she was expecting. The harsh reality of never being able to have my own children hit me hard that week. I was definitely caught up in my feelings, so I wrote about it to help sort things out. That was the most personal post I had written at the time and I found it to be insanely rewarding to share. That blog post got some serious recognition and reached TONS of people. I am still getting messages from strangers about it. So, I thought why not raise some more awareness?
When my sister and her husband told me they were pregnant I was so happy I wanted to cry. I actually did cry tears of joy when I got in my car. Now, I knew this news would be coming because they were wanting to get pregnant, but I was still so surprised and excited. Why did I choose to cry in my car rather than share my emotions with my sister? I chose to cry in my car because I knew after the tears of joy the tears of sadness would come rolling down. Once I was home I ugly cried where no one could see me. I’m not telling everyone this because I want your pity. I want people to understand what living with infertility is like. I could NOT be happier and more excited that my sister is having a baby. Y’all, I can NOT wait to hold my niece in my arms and tell her how much I love her already, but at the same time, I am sad.
I’m sad for myself and for women all over who understand this sadness. I don’t want friends or family to feel weird telling me when they’re expecting. I don’t want them to think that they have to deliver the news delicately. I’m not going to break down crying in front of you and curse the universe. I’m going to celebrate with you and be there supporting you throughout it all. I am going to love your child unconditionally. I will, however, in private, process my emotions of envy.
I will never experience that first time the baby moves in the womb or has hiccups. I won’t understand what it’s like to not be able to breathe because everything has shifted internally and my belly is expanding (right now I only feel that when I eat too many tacos). I won’t experience the pain of childbirth or breastfeeding. I will be envious of your journey throughout all of it. At times I may be jealous, but I never want someone to feel they can’t share their experience with me because I can’t have kids.
As a woman being told you can not have your own kids is soul crushing. You can not do the one thing you are biologically meant to do. Being told bluntly at 20 years young is harder than you could ever realize. I was at the age where I was still starry-eyed and naive. I had all of these plans for my life that I was going to accomplish and had yet to discover life had different plans. This was my first wake up call in that department. My biggest dream for myself was to be a mother. I wanted to be a mother like my own. One that encouraged me to be myself no matter what anyone else thought. One that would go without just so I could have what I wanted or needed. One who wasn’t perfect and showed me that it was okay to not be perfect. I wanted to raise children with my sisters and share stories and experiences about motherhood with them. The sense of utter failure I developed after being diagnosed was something I can not accurately describe. It’s been just shy of 9 years since being diagnosed and I still struggle to be okay with it to this day.
There is a sense of obligation to immediately tell anyone whom you are seeing and see a potential future with, “Hey just so you know my womb is barren!” Dating in your late twenties/early thirties is hard enough. Everyone has baggage at this point they’re bringing to the table and when you bring a bag full of bricks like infertility to the table, well it can be a deal breaker. This makes it discouraging to date. You hope and pray that you eventually find someone who will think life with just you is enough because sometimes IVF or adoption is too expensive or isn’t an option. Infertility is draining.
The depression that comes with your diagnosis…Lord. My doctor recommended therapy after I found out. At the time I thought I would just process this on my own. It wasn’t as big of a deal until I got older. Once your friends start having children and you experience that first breakdown because it hits you that that will never be you. I felt guilty for feeling sad for myself. I’ve since gone to therapy to try to process it, to become content with it. Most days I am fine. I know I will be fun Aunt Madelyn and I am totally okay with that role. It wasn’t until I found out my sister was pregnant that I started to feel sad again.
After Devon and Kyle told me the exciting news and I ugly cried on my stairs for a solid 45 minutes. I confused the hell out of my dogs sitting there sobbing, those poor babies, I felt immense guilt. I shouldn’t be feeling sorry for myself, I should be celebrating. I let it all go, or so I thought. Months went by and I went to the first appointment with them, I felt my niece kick, and I started planning my sister’s baby shower. A little backstory here, my sister is AMAZING, y’all. I’m sure everyone thinks that about their sister, but it is more than that when it comes to Devon. She still scares the hell out of me. One of my biggest fears in life is that I will disappoint her or let her down. She has the biggest heart and always goes above and beyond for others. She is the hardest worker I know and she loves even harder. Devon has hosted many a baby shower for her friends and poured herself into making sure everything was just right. Therefore, I knew this had to be perfect for her. I spent 3 months planning, coordinating and crafting. I was putting myself under an extreme amount of pressure and stressing myself out beyond belief.
Two days before the shower I was agitated with myself, so much so, that I cried the whole way home from buying succulents for centerpieces. I essentially put myself in timeout. I avoided the rest of the tasks I planned to tackle that night, took a shower and went to bed. The next day while reprimanding myself for being so damn emotional it hit me. Why was I making such a big deal out of this? Why did it have to be perfect? Well you see, this is the closest thing I’ll ever get to having a baby shower. It is the only one that my mom will be the Nana-to-be at. It is the only time Devon and I will share this experience. It was such a big deal to me because of my infertility. Once the shower was over I felt relieved and then the guilt crept in. I felt guilty because once again I found myself jealous of Devon. I could not have done this without the help of the lovely ladies below and I am sorry if I was annoying or overbearing when it came to planning. Hopefully, now you guys understand why I got a little OCD about the shower.
Infertility doesn’t come with a handbook. It comes with feeling distraught and depressed. It comes with hormone treatments and a price tag. It comes with a sense of failure and pangs of guilt. It comes in waves. Some days, weeks, or months you’re content and others you feel like you’re the only one missing out on the joy of motherhood. So the week of April 21st-27th is a big deal to me. It means more to me than it does to most. I will, personally, never go through IVF treatment and have repeated negative pregnancy tests, because I know I have infertility due to ovarian failure. So, to those women who put their bodies through hell and have yet to get pregnant…keep your faith. Stay positive and remember that even if you never get pregnant it will be okay. It seems like the end of the world, but I can promise you it isn’t. Remember, adoption is a beautiful thing and doesn’t make someone less of a mother. To those of you going through the adoption process, I have the utmost respect for you. Adoption may never be an option for me either because adoption agencies aren’t too keen on giving a baby to someone with heart failure and I am okay with that. But, those of you waiting and getting discouraged, be patient. Your child is out there and you will get a chance to be a parent. And to those of you who know you may never be a parent…YOU ARE NOT ALONE! I may only be a dog mom and in the end, that is okay. Ladies, when you find yourself sad, feeling sorry for yourself, or feeling guilty, FEEL IT! It is okay to feel those things. It is normal and we are only human. Don’t let anyone let you feel bad about not being a mom. Don’t feel ashamed if you have to take antidepressants, go to therapy or if you decide you need to change your whole life because of your diagnosis. No one completely understands what it feels like until it is them and you don’t have to explain yourself. Hold your head high the week of April 21st-27th and know that other women are in the same boat as you, a boat that no one wants to be in but one in which you are not alone.
My friends and family that have been patient and supportive, THANK YOU. Thank you for considering my feelings when you got exciting news and when you were sharing it, but next time don’t worry about me. I will be just fine. And Devon, thank you for going to my appointments with me, thank you for verbally assaulting the doctor that basically told me I was being a hypochondriac, thank you for letting me be so involved in this pregnancy. I love you more than I’ll ever be able to express. I couldn’t be more thankful for you understanding that this is as close as I will get to having my own child and for you to understand what that means to me. The kind of sister, daughter, and friend you are is why I know you are going to be the BEST mother to Cadence.
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!
In September I wrote about feeling off-kilter, unbalanced. I needed to clear my head and do some soul searching. So I went camping. I wrote about driving through Cape San Blas with the windows down, sun on my skin and singing along to one of my favorite songs with conviction. About how at that moment, while I was terribly belting my soul out, I had something similar to an epiphany. I had this realization that everything was about to change. Something big was going to happen and I just needed to be patient. I realized the universe was telling me I needed to slow down a little and I did not take the universes advice to slow down. I had no idea what was actually in store for me.
Something big certainly was brewing. It has taken me just over 2 months to really process the fact that my heart stopped. It took a few weeks for the reality of it to really set in. I’ve talked about it, wrote about it, cried about it and all together tried to ignore it. While it was terrifying and I live in constant fear that it will happen again, it has been the push I needed. I wanted to make changes but wasn’t following through with my actions. I was making excuses and still expecting big changes. I wasn’t holding myself accountable. I have since come to the realization that you have to start small for there to be any change. You can’t always dive into the big things. Sometimes you need to prepare yourself first.
I went to New York at the beginning of December and fell in love. As I was walking through the city taking everything in, I felt electric. For the first time, I felt truly comfortable in my own skin. Despite the hustle and bustle of New York, I was oddly at home and not overwhelmed. My last night there, while getting my groove on at the Roosevelt concert, Jesica looked at me and said, “Let’s move! Look at everyone. The lifestyle is different here. I want this lifestyle. I want change.” Well, girl, you may have been drunk, but you were speaking exactly what was on my mind. All I’ve been able to think about since that trip is going back to live the city life.
After leaving New York getting back to reality was tough for me. My mind wandered and all I could do was daydream about moving. Life was feeling mundane. It had been just over a month since getting shocked and I knew that this was my chance for big change. I, essentially, defied death and was given another opportunity to do something. So, I started small.
Over the years I’ve been told and have read that to start making a difference you should start with making your bed EVERY morning. So, I started by making my bed EVERY morning. This probably seems minuscule, but it makes a HUGE difference for me. I have always been guilty of not making my bed or putting clean clothes away immediately. Something small, but it was something that caused clutter and chaos. It was unnecessary stress. I’ve now been making my bed every morning for over a month and it has become second nature to make it as soon as I get the dogs out of it in the mornings. I’m also putting my laundry up as soon as it’s done. These two simple tasks have surprisingly eased stress I didn’t realize I had.
I’m not going to lie, I’ve been feeling really proud of myself with taking small steps. So, I decided little changes would be how I make my big changes this year. I’ve set a few big goals for myself to accomplish this year, but I now know I need to set little ones to help me get to where I want to be. I am finding that for me to able to hold myself accountable, I have to put my goals out there for the world to see. If I write them down just for me it is easier to let myself down and make excuses. However, if all of you are aware then it adds a little extra pressure and well I work well when under pressure.
So here are my monthly goals for 2019:
January- After experiencing the relief of stress from making my bed and putting clean clothes away immediately, I decided to de-clutter. Not just my belongings, but also my personal and social life. I dropped the number of classes I was taking this semester down to two so that I could focus on and absorb the information better. I am reading “The life-changing magic of tidying up” by Marie Kondo. I am also watching her show on Netflix. I am going through each room/closet and purging. It’s rather rewarding, but learning how to fold my laundry differently has been a task. I am also saying NO to things that I don’t really want to do/attend. That don’t bring me joy. I am also doing things like purging unused apps and contacts on my phone. Purging friend lists. January my goal is to de-clutter and I am working diligently at achieving this goal.
February- NO SOCIAL MEDIA! My goal for February is to be more present in what is actually happening vs social media. I spend too much time distracted by social media and I need to stop saying, “I’ll take a break later.” I am doing it now. February 1st all social media apps will be deleted off my phone. I’m going to do a full 30 days of nothing. I’ll work on writing for my book. I’ll stay focused on homework. I’ll be present in social settings instead of reaching for my phone.
March- Whole 30! I did it for 22 days once before and now I am going to do it for the whole 30 days. I am going to complete it, no excuses. I figure after a good social media detox I should do an actual detox. I’ve had friends who have had wonderful results and it’s helped them get their body back to a healthy place. I think the hardest part for me will be no mashed potatoes for 30days 😫.
April- April will be my fitness month. After getting my body to a clean and healthy state internally, introducing all those “bad” foods again could backfire. I figure I’ll need to get my body in a healthy state externally and stay on top of the lbs those bad foods will add on. I try to stay in decent shape as it is. I jog/run regularly, but I’ll be getting back into Pure Barre and staying dedicated. Pure Barre was something I fell in love with but couldn’t do with my schedule this past semester. It’s a damn good workout, that I can kind of do, and it makes my booty look realllll nice 🍑. So a solid 30 days of actively participating in PB. I’ll gladly accept a workout buddy to go look ridiculous with me! Hopefully, there will be another pop on the beach because that was one of my favorite classes!
May- I am going to do a 30-day writing challenge that was encouraged by one of my professors this past semester. I decided I would self publish one of the books I have been working on this year and to focus on growing as a writer. This will be one small step to help me strengthen my writing. My professor told me to master my craft I need to do it EVERYDAY. I try to write every day, but sometimes time gets away from me. This will force me to write every day and make it a habit. Remember doing something consistently for 4 weeks is how something becomes a habit. Expect a lot of blogs to come your way in May!
June- June is my month of ME! Being my birth month I decide June was going to be a month of self-love and self-care. I am going to do more things that I don’t make time for when it comes to myself. I am usually one to put others before me. It’s my nature and I put myself on the back burner. Well in June I will put myself first as I ring in the last year of my twenties. I will make sure to carve out at least one hour a day for myself. No phone, just me, and do what I want to do. I will do things I’ve been putting off. Self-love and mental health are important, that is why my birth month will be all about ME!
I am only doing 6 months of small goals at a time. I’ll reassess and see what I need to do in order to get me where I want to be by the end of the year. Life happens and plans change. It is more realistic to only set a few at a time. This way I don’t set myself up for failure. These small goals may seem silly to some of you, but they make sense for me right now. I’ve finally accepted that my timeline is my own and I am done comparing myself to others. I am comfortable in my own skin again and content with the progress I am making. I have set big goals this year for myself. Here is a few:
1) Self publish my first book
2) Actually, move out of Okaloosa County
3) Read and write more!
I picked a reading challenge for 2019 and I’ve already started it.
I’ll gladly take recommendations on must reads!
This week everyone has been posting this whole 10-year challenge of social media and it’s made me chuckle. I don’t so much care about how different I look from 10 years ago, as I do about the person I am today vs 10 years ago. But for the hell of it….here ya go!
Me 10 years later
Thank goodness I let go of my need to be a blonde 😂🤦🏻♀️. But my change in appearance isn’t what ultimately matters. I hope everyone takes the time to encourage personal growth and hold themselves accountable for the changes they want to occur in 2019. Set small goals that will help you achieve your big goals. Stop comparing yourself to others. There is no rush, just because one of your peers has achieved what you want already does not mean you need to rush to get there. Enjoy the journey. I definitely am slowing down this year and enjoying things more. You can have fun and work hard. It is possible.
It’s only January 7th and I’m already seeing people discouraged about their New Years resolutions. Y’all, it has been a week. One week. One week does not define your whole year. The new year is seen as a fresh start, blank page, clean slate, whatever you want to call it. Most change does not happen in a week. Life altering changes are the ones that happen immediately. Pregnancy, getting fired, getting promoted, death, car accidents, winning the lottery, etc.. Those are the changes that are immediate. If you’re wanting to make changes this year you have to work at it EVERYDAY. Did you know it takes four weeks of doing something, consistently, for it to become a habit? My cardiologist gave me that bit of knowledge after I got my pacemaker and had to alter which ear I used to talk on my cell phone. A whole month for something to become a habit.
Instead of discouraging yourself after a week, why don’t you give yourself a break and continue trying? My new year certainly did not start the way I intended. I made some decisions that were out of character for me and I am trying to navigate my feelings toward that since it is not something that is normal for me. However, that is kind of what I wanted for this year in a really roundabout way. I ended 2018 with the intentions of taking 2019 to expand my horizons. To take chances, try new things, and to continue to better me.
2018 taught me a lot. It was a strange year and the last 8 weeks of it were incredibly difficult. I had multiple life-altering changes occur and I am bringing one of them with me into this clean slate. I have a lot of unknowns ahead of me. I will be dealing with who knows how many new diagnoses and whatever else my heart throws my way. I am going into this year fully aware this is happening and I am not getting discouraged. So why are you getting discouraged after a week?!
Continue to push through. Life gets hard and positive change does not come easy. I constantly have people telling me that I am strong, a badass, or they don’t know how I handle things. Want to know how? I refuse to give up. I continue to push through. I am still terrified to go to sleep and well, do anything for that matter. At any moment I could just flatline again, but I push through. I focus on what I can do and control. When things get tough and I get discouraged, because I do get discouraged, I think about it in the most literal way. There is nothing I can not do about what has already happened. It is what is and you have to accept it, even if you don’t want to. I can only focus on how I handle it and how I can change what I can.
I’m lucky because I got a second chance and most people do not. That is why I am embracing 2019 and growing at my own pace. I’ve set big goals for myself this year as I enter the last year of my twenties. I plan to travel as much as I can, to continue to work on my education, to move out of Destin(finally), to continue to recognize my toxic traits and work on changing them, maybe actually let another person in, and most of all to make something of this writing. I’m pretty sure my blog is awful, but all the support I get really means a lot as I push myself to improve. My biggest goal this year is to self publish my first book. I honestly don’t care if it sells. As long as I can say that I worked my ass off and accomplished it will be enough.
Your goals for this New Year aren’t going to happen with the snap of a finger. Don’t beat yourself up because you’ve already slipped up. Pick yourself up, dust yourself off and start over. You’ve got 51 more weeks. Take it from someone who constantly is getting knocked on their ass. I get 5 steps ahead only to be knocked back 3. It will be okay. You still have time to accomplish what matters most to you. My point here is DON’T GIVE UP AFTER ONE SET BACK!
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.