Just Something A Little Vulnerable (TW- medical episodes/anxiety discussion)

Something that is important to me as a human who is building a platform is using that platform to help others. 

So, in case you didn't know.. Here's a little part of my story. And by reading this, I hope you don't feel alone or that it can help you in some way. 

I was born with a congenital heart defect called Tetralogy of Fallow, a condition where your heart doesn't fully generate and you have a hole in your heart. They didn't know this until I was 3 months old and they found me in my crib, blue. Blue babies were typical of Tet patients because in the 80s and 90s they didn't have technology to see that defect in the womb. (today they do and can even fix it!) I was blue because the oxygen wasn't routing to my heart properly because the blood was leaking out of the hole in my heart and wasn't being pushed to the right chamber where it provided oxygen to my lungs and body. (Basically suffocating my body.)

I went straight into open heart surgery where they put a patch over the hole. My normal heart cells grew over that patch eventually.

I did not have any limitations as a child, mainly the limitations I had was I wasn't allowed to play softball (couldn't risk getting hit in the chest with a hit ball) unless I was in the outfield and my mother didn't want me to do that. So instead I played basketball and volleyball (tried softball in HS but didn't like it much.) The other limitation was the severe anxiety I developed (participated in a clinical trial as an adult and found many cardiac patients when born with this condition suffer with anxiety just from trauma stuck in the body and brain). 

In second grade, I woke up one morning before swim practice, I couldn't stand up because of the severe pain in my side. I was told that if I couldn't go to swim practice, I would have to go to the ER. 3 hours later I was in surgery getting my appendix removed. They sloppily cut me open because of the emergency and drew down my abdomen because they weren't sure if it was my gallbladder or appendix fully until they got in there. I was awake when they rolled me into the operating room where they even allowed me to pick out my favorite radio station. I vividly remember them putting a mask on me for anesthesia and them then removing it and starting to shove the breathing tube down my throat before I passed out. I woke up afterwards screaming and strapped to my bed, not knowing where I was. I was out of school for weeks and missed a school trip because of it. The gradeschool kids did write me some fun cards though.  

When I came back to school, I was pretty normal, except my anxiety worsened. It got to the point where I was too scared to ride the bus and I never wanted to go anywhere without my parents. It got so bad I would even follow behind my mother on the lawn mower because I was scared if I was too far away from her or my dad, I wouldn't get help if I needed it. Eventually I ended up in therapy (because it was unhealthy and crippling anxiety) and got put on anxiety meds. (Yes, my therapist was a wacko who recorded his voice on a cassette tape and made me listen to it when going to sleep. It was super creepy. It wasn't until I got on Lexapro that I started feeling better).

Thankfully that med changed my life for the better. I was able to be a pretty normal kid, joined the basketball team in 5th grade and played through 12th grade. (Wing, point guard and post in different phases). But I always hated that I couldn't fully keep up with all the other kids. My cardiac capacity was lower.

In seventh grade, I started playing volleyball and found my passion. I became a libero and played through the start of college. Soon after seventh grade, I was told, my pulmonary heart valve was leaking now which was common with my heart defect and was told I needed another heart surgery. My parents and I all cried together in the office as we awaited when I'd need it. Luckily, my doctor let me decide when it was time. (Pulmonary valve replacements aren't as deadly as Aortic valves because the body can go a lot longer with them leaking). It wasn't until 2007 when I decided it was time. I was tired all the time and my heart chamber had gotten so big from all the extra blood, it was pushing out my chest cavity (I still have a permanent bump in my chest from this). I went into open heart surgery after basketball season (because I didn't want to miss it) and almost bled out on the table. When they rewired my sternum back together when I was a child, my heart stuck to the back of my sternum, so they cut too deep when they went in this second time and cut into it. Luckily being on bypass and they're quick work saved me. They then put a neon patch with instructions on my heart and sternum so that the next people who cut into me didn't run into that issue and it didn't risk my life. Being 16 and signing paperwork with my parents about the chances I'd die during surgery and infection... brought my anxiety back. I was convinced i wouldn't make it through the surgery, but by the grace of God, I did. 

While in the hospital right after, my boyfriend at the time was at some other girls house and none of my so called "friends" visited me. I had always really wanted close friends and tried to make them, but after that I decided that those people I had tried with didn't care about me much, so I became more of a loner. (which is something I still struggle with to this day) I was out of school another month in recovery. 

A year later, we were told that the valve wasn't holding and I'd need another heart surgery. Another blow, but there was some good news. A new surgery method was being developed in Europe where I wouldn't have to get cut open and I could get it through my leg. By 2010, it was approved in the US and I was eligible for it. I got my surgery in 2010 through my leg and was back in school a week later, walking around. I was tired but otherwise ok. I was later published as part of a research study in a medical journal as a statistic. 

I went back to being a normal college student and was back off my meds and enjoying life. 

Fast forwarded to working at a secure military facility and I accidently ingest a chemical. They didn't know if it'd kill me, make me sick, or cause long term effects because it was a patented drug and we weren't allowed to know its composition. I was monitored for 24 hours to see if I had to go to the hospital. This started my journey of severe panic attacks that I still suffer with off and on. (fast heart rate, feeling like I couldn't breathe, pressure on chest, yada yada all fun stuff for a cardiac patient to experience to make me wonder if i was dying or if it was anxiety).

2017, I woke up in the middle of the night with severe abdominal pain and was sure I was dying. My body just knew. Rushed to the ER and they said I had a messenteric cyst, which was rare to find in adults which was so large it was cutting off the main artery in my abdomen cutting off blood flow. I spent a week with not being allowed to eat and on a morphine drip, duladid and oxycodone because nothing else helped with the severe pain. I was passed around and around doctors because no one wanted to knick my artery or be the one who killed the cardiac patient. Finally we found a doctor who specialized in that removal and he did a fantastic job. I again was published in a research article and still have the picture of the cyst and the inside of my abdominal cavity in my email. I spent some of that week with my parents, and some alone and it was the first time i'd been in a hospital by myself as an "adult." I hated it. I was home from work for a week recovering and had to borrow my dads extra cane to use to get around for a bit. Cue the usual anxiety from another traumatic situation. 

Spoiler alert, I was married at the time and my ex husband just thought my medical issues were too much. Which is honestly OK. Everyone has thresholds for what they can handle. Having a chronic condition and severe anxiety from it all wears on me and the person I'm with. Luckily now, I'm remarried with a man who sees my conditions as worth it and was all in from the get go to take care of me. He's never made me feel like a burden (even though I still feel like it sometimes).

 

To be continued...

This is not the end of my story, but the end of my story for now. 

Because my intention with this isn't to trauma dump or to seek pity, but to let you know you're not alone. The story gets darker, but also brighter from here and I'm very grateful that I'm still here. 

So what was my intention with the above? To remind you that life is fucking TOUGH, but it's still worth living even with the fear, and the pain, and the betrayal. It's worth fighting through. Yes it sucks with anxiety and medical issues to feel like you're always going two steps forward and one step back, but you have to ride out those moments. 

Getting older isn't easier when you have a chronic condition, so working on the mind is what's going to save us the most along with continual easy movements when you can't do the normal workouts. 

In some of my later blogs, I want to get more into things that saved me, more things that broke me, and other things that inspired me to keep going. You'll see some of these moments pop up in my stories, but for now the above is just a snippet of the true me. The real me I don't really tell in depth to many. Because if you've had it rough, you know talking about your tough times gets annoying to yourself. But I promised myself if i started to get a platform, I wanted to use it to help people like me. To let them know they're not alone and to help those, especially mothers and those who struggle, how to cope with being dealt a little bit of a different hand and how to help their children who are struggling. Just know, I'll always have an open ear for you all and that if you feel alone just know there are others like you out there that have felt the same way you do. Keep going. Hang on. Because you're a miracle and you have a purpose here. Never forget that. 

I love you all.

Lorraine <3.