Category Archives: Health

Living with serious health issues is no joke. Here is my journey to living my best healthy life

Hearts, everywhere…

February 21, 2019 Ele and the Little 1 Comment

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!

Health, Music, Self love, Travel

Oh what a year…

December 10, 2018 Ele and the Little Leave a comment

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.

Health, Self love

After shock…

December 3, 2018 Ele and the Little Leave a comment

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.

Health

When the other shoe drops…

November 4, 2018 Ele and the Little 4 Comments

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.

Health, Self love

Babies, pregnancy and infertility…

September 26, 2018 Ele and the Little 7 Comments

**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.

Health, Self love, Travel

Balance…

September 25, 2018 Ele and the Little 1 Comment

Stability, steady, fairness, etc.. I could list the many definitions of balance for you, but i’m sure you all know what balance means. Are you aware of how important it is? Not in the sense of being able to stand yourself up straight. While that is important that is not the balance I am talking about. I’m talking about balance in your life. The balance with ourselves. Lately, I have found myself off balance. My actions contradicting my feelings, my wants and my needs.

I may have bit off more than I can chew. 15 credit hours, 2 jobs, sleep and any form of a social life…it’s a lot. I am constantly on the go. I like being busy, but I’m beginning to feel like I can’t breath. When I stop to breath, let my hair down and relax, I instantly regret it. I don’t have time to relax. I’m now a constant ball of stress. I haven’t been able to find a healthy balance. I enjoy the chaos that comes with my schedule, I can thrive in chaos, but it isn’t healthy. I am trying to find a balance for studying and sleeping. Sleeping is a lost art for me. It has been ever since I had my pacemaker implanted. However, as of late I am barely getting any sleep. I am watching video lectures and reading until 2-3am and dozing off. Only to wake up at 5:30 to get my day started. The amount of coffee I have been consuming is definitely going to make my cardiologist lecture me at my appointment next month. I need to prioritize my time better. I need to find the balance of getting this degree done quickly without sleep deprivation. Without wearing myself out. I suppose I could be writing my research paper instead of this blog, but I have to have a little fun. Right?

When it comes to being off balance it is not just my chaotic schedule and my need to be an overachiever. I am feeling VERY off kilter when it comes to my emotional needs. I have been thoroughly enjoying being single. Finding myself after a failed relationship. Having no one to answer to and being able to do what I want, when I want. There is something invigorating about being alone, but loneliness has started creeping in. That loneliness has pushed me to want to go out more, be constantly busy, to avoid being home alone. That is kind of hard to accomplish when you’re exhausted and have tons of homework. Yet, I keep finding myself out on the weekends attempting to be approachable and not awkward. All this putting myself out there and actually giving someone the time of day has made me realize a lot about myself. When I am actually interested in someone and want things to progress, I become a completely different person. I overthink EVERYTHING. I am quiet and become tactical. I plan out what I am going to say or how I am going to act. I become closed off and hesitant. I am terrified of rejection so I try to avoid any opportunity for it. I am not that person. I am talkative, fly by the seat of my pants, compassionate and typically carefree. So, why can’t I find a balance of being cautious and being myself? Why can’t I stop myself from putting up walls, being silent and unreadable? It makes it worse for myself, I know. Especially because if I don’t hear from them, I am too afraid to reach out. I know it was likely my fault because I wasn’t acting like myself. I beat myself up over it. Now, some guys just suck and your feelings are going to get hurt. Learning to recognize the difference in self sabotage and an asshole is important. I have to find the balance of letting someone in and still remaining cautious. I need to learn to not self sabotage. I need to learn how to keep my feelings and my self worth separate. That way I stop letting myself and others change how I view myself when my feelings get hurt.

Finding balance in every aspect of your life is tough. I strive to be the best version of myself daily. I have days where I’m judgmental more than I am accepting. I try to be the healthiest version of myself while being a sickly person. I try to eat healthier, but get swayed by my sweet tooth. All this Halloween candy does not help. I try to workout regularly, but I already don’t have enough time in the day. I also try to physically be balanced. I have bruises all over my body from my lack of coordination. If I can go one day without falling over, walking into something or not tripping over my own feet…it’ll be a damn miracle.

Is this what life is? Finding balance? Being serious but still trying to be fun. Does one ever accomplish a balanced life? Is there a way for me to balance making money, traveling, taking photos, having all the dogs I want, getting enough sleep, and having someone to share it all with? Is that unattainable? Feeling like what I want is unattainable is a huge reason I am taking a break from social media, this blogging doesn’t count. I found myself constantly comparing myself to my peers and looking at their picture perfect lives. Realizing how much time I spent comparing myself, getting myself feeling down, and making myself so readily available to anyone…it gets you out of balance.

It’s time to reset. I’m getting out of town this weekend. Clearing my head and coming back collected. Spending some quality time with nature and my other favorite Mads, besides myself. Finding my balance again, hopefully. Fingers crossed. Can’t wait to be in Apalachicola for the weekend.

Health

Feeling a little sentimental…

August 29, 2018 Ele and the Little 3 Comments

The gem on the left popped up in my memories for today and I couldn’t help but laugh. Why? Well because I realized I took a selfie yesterday making the same face. However these pictures were taken under VERY different circumstances. 3 years ago I was riding in an ambulance trying not to lose my mind because my life was being derailed. Everything changed for me after that ambulance ride.

A device was permanently implanted in my body. The very thing I had been avoiding for years. I had to admit that I alone couldn’t beat my diagnosis. That I wasn’t physically strong enough to be able to get through life without the help of a machine. I was incredibly lucky my heart started to beat in a normal rhythm on its own that day. It terrifies me, still, to realize that I was that close to it just stopping for good. I was alone in that parking lot when my lightheaded fainting spell happened. I had been alone many times before when those happened. I know now the gravity of the those fainting spells and what it now means when I get the symptoms of them. I still live life in constant fear of going into V-tach and getting shocked.

Yet, here I am 3 years later taking a selfie on my best friends phone, for her to find at a later date, with the same goofy face. I have pushed through my whole life changing. Some days I completely forget that I am not quite physically capable as the people around me. Some days my heart reminds me that it’s not normal and I struggle to get through the day. I have days where I am angry because of all the heartache having a serious medical condition causes me. Sometimes I blatantly ignore it. They do say ignorance is bliss. But everyday I get through and it’s because I keep this goofy positive attitude.

I choose to be silly. I choose to be hopeful. I choose to trust that things will happen however they’re supposed to happen. I can’t control everything and I can’t believe Friday will mark 3 years with this hardware in my chest. It seems like yesterday and an eternity ago at the same time.

I’m sure people that know me get tired of hearing about it, but I don’t care. It’s an everyday battle and I’m allowed to be proud of myself for getting through it. I have tried so hard for my heart to not define me. I wanted to find a way to define myself and make my health be a small part of that person. My health is a big part of me and the harder I fight to sweep that aside it comes back hitting harder. I have realized I shouldn’t sweep it aside. I should let it define me and stop looking at it in such a negative light. People constantly tell me how strong I am for everything I’ve gone through. Hearing this makes me feel uncomfortable. Why? Because they haven’t seen my break downs. They haven’t seen the times I sobbed on the bathroom floor, cursing my heart, tired of being sore and sick. They haven’t been in the doctors office when I get bad news and experienced the drive home with me speechless and fighting back tears in front of my mom. You haven’t felt the struggle to not freak out, to not be scared, because everyone around you is trying to do the same. At times it’s exhausting to be strong, to be positive, to smile through it all. I am not always as strong as you all assume. I have felt like giving up on more than one occasion. Especially the days and weeks after that photo on the left was taken.

My pacemaker surgery hurt worse than my open heart surgery I had at 22. Hell sometimes I still get shooting pain in my muscle surrounding my ICD. Not everyone knows the nitty gritty details. Not everyone understands the mental impact it has on a person. I’ve spent hours in therapy sorting my feelings and figuring out how to process. To have people compliment me and tell me how strong I am is weird, because I know how dark the journey has been, but no matter how dark it has been I have found a way to push through. With sarcasm, with being silly, with ignorance and with love. I have never let it keep me down for long and I realize the importance of being able to reflect on that. The importance of being able to communicate the struggle and the victories. To show you guys that throughout it all, the physical and mental anguish, I never completely lost myself. I have still kept my ridiculously charming (Devon and Erin that description is for you 🤣) attitude. And for some reason I still continue taking goofy looking selfies when I should be being serious. I guess somethings never change.

I can’t help but laugh at myself and feel a sense of pride when I look at these photos. How lucky are you for knowing me?! 😂 How lucky am I to still be able to make that goofy face and look ridiculous in selfies? Because I came all too close to not being able to take either one of them. Here’s to just shy of 3 years since surgery #8 and here’s to hoping surgery #9 doesn’t happen anytime soon 🥂.

On a serious note can someone help me find out if there’s a punch card for these? Like, “hey I have had 10 can I get the next one free?” It’s get expensive y’all.

Health, Self love

Am I being passive aggressive? Oh well…

August 14, 2018 Ele and the Little 1 Comment

Have you ever wanted to just scream bloody murder? At the top of your lungs? As loud as you can? You have a bunch of pent-up emotion that is starting to boil over and you need an outlet? Well, I am at this point. As I drove home yesterday I could feel it coming. I knew that wall was close and I was going to hit it head on. One little push and BOOM. My push arrived in the form of a text message today. As I sit writing this it is taking everything in me not burst at the seams.

I have spread myself rather thin lately. Constantly on the go and busy to the point of not being able to completely focus. 90 to nothing all the time. My sleep patterns are so out of whack that my insomnia is in full swing. I watched about 5 hours worth of The Office last night and devoured a whole pint of ice cream. Productive right? (That halo top mint chip though…amazing!) My coworker asked me the other day why I always looked so tired. Well thanks buddy! Now I know I look like shit. **Insert eye roll and crying face here** I have to STOP letting myself get like to this point. I may have some constant need to please everyone. I know, I can admit it, that is the first step, right? Admitting your problems. I need to learn to say NO! I feel obligated not to let others down, to be available for any social event, to be nice all the time. I am exhausted. I am not nice all the time. I don’t want to be. Over the past few months my need for self growth has strengthened. I’ve worked hard to shake old habits. To say no and stop doing things that don’t benefit my well-being.

I know who I am. I lost myself for a while. I became the girl I hated. The one who changes herself for someone else. Who puts someone (in my case a guy), that isn’t putting you first, before yourself. I wasn’t raised to act like that person. I have a BIG personality. I was raised to be independent. Not to be small in order to convenience someone else. After many forms of rejection throughout the course of my life I changed. Some where along the way I decided it was easier to please everyone than be rejected. Easier to change who I was than to be an inconvenience. Well pardon my french but, FUCK THAT! I am DONE.

I am not doing anything that I don’t want to do any longer. I am not going to apologize for it. I am not going to feel bad if someone doesn’t approve. In the end what matters is my well-being. I have to live with myself everyday. If I want to stay home instead of go out, I won’t let anyone guilt me into leaving the house. If I want to cut my hair off, i’ll do it even if someone likes it longer. If I don’t want to give someone my number or sleep with someone just because they show me attention, I won’t. Not because I am a prude. I am no saint or prude. I wanted to be a nurse, not much about the human body bothers me. I have also legitimately shown my chest to hundreds of people. I don’t have much modesty left at this point. I am not a delicate little girl when it comes to sex and the reality it plays in our everyday lives. However, it’s because I am not some girl who needs attention. Who needs to feel wanted. LADIES, STOP SPREADING YOUR LEGS LIKE BUTTER ON TOAST for the first person who shows you attention. Do you really want attention from someone who looks at you in that light? Someone who will ghost you for not sleeping with them? Or who will ghost you after you’ve slept with them? I can tell you which scenario will make you feel better about yourself in the long run. I can tell you from experience. I have been in both of these situations. Like I said, I am not a prude. However, I have learned that if it does not benefit my well-being then it is not worth my time.

Time is so precious. Why waste it? I have wasted so much time and set myself back. I am now working my ass off to make up for that. No, I do not have my shit together. It is kind of in organized piles. It is slowly getting to where it needs to be but, there is forward movement. Baby steps, right? For example things have gone my way lately, for the most part. Not romantically but at this point I am chalking that up to a loss. I am not even going to deal with a love life currently. I keep finding myself holding my breath. Waiting for the other shoe to drop. Why? Why do I, we, feel like things can’t go our way? Life is allowed to go your way. Maybe if I keep saying it I will really believe it. Life is allowed to go my way. The only person responsible for my happiness and my decisions, is me. I am letting life work with me for a change. I am letting go of all the toxicity. I am making moves forward. I am working on a new degree. It is not easy. I will probably get defeated and in those moments I will need someone to bring wine and distract me. I am finally getting my own place after failing in a relationship and running home to my mom. I still sometimes need her to help with the deep wounds. Do we ever really grow out of that need? I am doing things I want. I am not letting someone’s disapproval get in the way.

I want to experience so much and I have let others tell me no. I have let my health stop me. I have told myself I wasn’t good enough. Well I am good enough. I have a lot to offer, I am smart, and most of all I have a desire to learn, to grow and to try new things. So one of the first things I am doing for myself is taking my happy ass up to New York in December. I have always wanted to go see all the decor during the holiday season. To go to the museums, central park and Rockefeller center. But most of all to EAT everything I want to eat. My plane ticket is booked and I will be in New York City playing tourist with my cousin on December 1st. I am not letting myself get to the point of bursting at the seams anymore. Why, because it’s ridiculous. Also because when I over do it like this, I don’t take care of myself. Case in point…I am about to go to the ER because I am pretty positive I have pneumonia. Eh you live and you learn.

Next time you find yourself wanting to scream or throat punch someone, maybe I am just a little violent, take a step back. Is it good for your well-being to feel this way? NO! So re-analyze what is getting you to this point. Take care of yourself. Make yourself happy. Enjoy your life. Don’t let someone else make you feel bad about yourself. Most of the time it is their insecurities being reflected on to you.

Now I am finally going to respond to that text that pushed me over the edge. I am going to go to the doctor and then I am going to get mashed potatoes. Why? Because that is what I want to do.

Health, Self love

This is why I blog…

May 29, 2018 Ele and the Little 2 Comments

My life has been hectic the past few weeks. Between trying to hold myself accountable on this fitness challenge, starting a new job, traveling, and trying to rest. I have been tired and in this sort of lazy funk. I have not even bothered to try to write anything because of this funk. I am forcing myself to get back to being productive and one way is to publish another blog. I feel productive and accomplished when I put myself out there and get responses. Writing is something I thoroughly enjoy.

I have had a lot of people compliment me on my writing and blog since I started. I have also had the opposite response. Under handed comments, snide remarks and judgmental looks during conversations about my blog. I knew this would happen and I was prepared for it. However, I wanted to share with everyone the reason I started this. If it becomes a source of income and a career path for me then that would be amazing. If it doesn’t I will be okay with that too.

I believe that some things in your life should be kept private. Not everything needs to be on social media and be public knowledge. There is a lot I do not share. What I do share might be considered over sharing at times and if so…Sorry! Some people may get tired of my yearly post on the dates of my surgeries or get tired of hearing about my failing health. The one thing my health and this life has taught me is that kind words of encouragement can get you through the hardest challenges. Hearing stories from others about how they have faced similar situations and how they felt during them and their process to make it through has helped me tremendously. It’s inspiring. I know that I want to inspire, make a difference, and help others. Even if it’s one person I do this for in my whole life then I will be okay with that.

A few weeks ago I got a message request on instagram. It was from a girl named Mary who is around my age and has a congenital heart defect. She was needing a pacemaker. She was doing her research but when you research into pacemakers and defibrillators you tend to find results for more of the elderly community. It’s difficult to find information on 20 something’s getting ICDs, implantable cardiac devices. She turned to social media and was typing in hashtags. That is how she found me! I do not set my profile to private and this was one of those reasons why I do not. She came across this post…and then a few others I’ve posted. This post however was an extremely personal post. I made it mainly for myself. It was to help me realize just how far I’ve come and how much I’ve overcome. When posting it I knew it was for me but had hoped one day it would reach someone. Well it did! Mary and I exchanged stories and I answered all of her questions on my experience with getting my ICD. I also had informed her that my Aunt recently had one put in and she is only in her 40s. After we talked and she felt better about what she was facing, I realized I did exactly what I had hoped for when I posted that Instagram. I helped someone. It wasn’t in a big way but it made a difference.

The past few weeks I’ve kept up with Mary on social media and her surgery went great. She is now healing and getting used to life with a pacemaker. It is a bit of an adjustment and certain aspects of your life completely change but you eventually feel normal again. Being able to use my experience to help others is such a rewarding feeling. This is why I blog.

I blog because I want to help others. My blog isn’t always going to be about fitness challenges or trying new things. It is also going to be about those difficult things in life that people have a hard time talking about. It’s about self love, finding yourself, and getting through the hard times. I don’t want to be successful and have nice things from life. I want to make my life mean something by helping others. Putting myself out there and making someone’s life better. Making my life better and making this world a better place. That is why I started this blog. Because it makes me and my soul happy.

Health, Self love

Bikini body not ready

Link April 4, 2018 Ele and the Little Leave a comment

The summer season is upon us and I am yet again struggling to be comfortable half naked in front of others. I know, we all suffer from body image issues. Damn that media for all those unwanted thoughts of not being “perfect” enough. Shame on all of us who tear down others because we are not secure with our bodies. For those of you who know me and are thinking, “What is she talking about? She’s so skinny!” STOP CALLING ME SKINNY! It is almost as insulting as calling someone fat. My body image issues stem from years of being told I have chicken legs, being called skinny, and being told I need to eat a cheeseburger. Up until 3 years ago I ate all the damn cheeseburgers I wanted and it didn’t help.

Do you know what I want to be called? Healthy! I want to be complimented on how healthy I look. Not on how thin I am. I want muscle definition, I want to have stamina, and I want to know that I am in the best shape I can be in. How does one achieve this goal? First of all get off my ass and eat a healthy diet. But I don’t want to be one of those people who eats to live. I live to eat and would like to keep it that way. My sweet tooth is almost as out of control as my constant hankering for cheese. I know I need to better understand a healthy balance for my diet, as I write this I am eating a box of thin mints. What? I’m not perfect.

I want to feel good about myself physically. Over the next few weeks I am going to write about my health journey. I try to be healthy and lord knows I need to be. Having heart failure is a constant reminder of needing to be in the best health possible. Starting Monday I am going to do an 8 week fitness challenge. I’ve got to give myself the weekend to finish off my girl scout cookies and Easter candy. Don’t judge. I will do different work outs, have a healthier diet, and get myself into a healthier state. If you have any suggestions as to what worked for you please feel free to send me them. If you want someone to be healthier and feel more confident, but you need someone to lay it out for you then I am your gal. Time to feel better about getting half naked in front of my peers!