“Crying is how your heart speaks, when your lips can’t explain the pain you feel.”

I’ve done a lot of crying and not enough writing. It has been a long time since I’ve written. 

Truth is, I couldn’t bring myself to express the pain I had this past April when we had to put our dog down. I didn’t want to accept that he was getting old, because I wanted him to be around forever and ever. I couldn’t imagine my life without my best friend. And yeah, maybe I haven’t experienced loss at the magnitude of others but this was a tough one. I grew up with him. I had him for 16 years, the greater part of my life. He was everything to me. His love was so unconditional and honest. He was always excited to see me, as I was to see him wether I had been gone a week or five minutes. I miss that most I think. The homecomings. They were the best part of the day. I’d get so excited. I also miss the companionship. He was always there. Always. I think about him everyday, I stare at pictures and STILL sometimes expect him at the door or to be there begging for my food. I’ve looked for him in the backyard when he wasn’t inside. He was sick and it was his time. I always told him to wait until they fixed my heart so that I could handle the heartbreak of losing him. He couldn’t wait, and I don’t blame him. It was selfish of me to ask. I miss him and I will forever be heartbroken. 

After that heartbreak, there was finally an attempt to fix it. I had my ablation. Last week to be exact. I unfortunately have less and less good days and that’s been going on for a long time now. It needed to be done. I was desperate. It went as well as it could’ve gone. It’s a waiting game and the recovery is tough but I will get there. It takes about 3 months for the scars to heal. I don’t feel better yet, but I still have hope. I also had a biopsy of my heart (results pending). This may help to diagnose me. I have met with a few new specialists and everything seems to be moving in the right direction, and a few more to add to my list in the near future. I have a doctor that is on to something. He’s out of the box and I honestly think if anyone’s going to figure it out, it would be him. He said I’m in the beginning stages of heart failure. He has been increasing on of my meds to help with those symptoms. 

My defibrillator went off again. Just a few weeks before my scheduled procedure and on the day of my best friends wedding. This time it was ventricular fibrillation. My heart stopped working properly and I wasn’t getting enough blood circulated so I was unconscious. Luckily, I was with all my friends because we were just about to head out to get our hair and makeup done. They called 911, I was brought to the hospital. I felt like and ass. I didn’t want to take any attention off the beautiful bride. With a little convincing after a few hours and some testing I was discharged with strict instructions to return if I started to not feel well. I made it to the salon in time for hair and makeup. I was even able to make it to pictures! The only thing I skipped was walking down the aisle. But, I sat front row and got to witness one of the most beautiful things I’ve seen. I was so happy to be there and be a part of it. 

I often don’t realize how strong I am. I don’t see it because I don’t feel it. I always feel like I’m breaking. I feel weak and helpless. But when I think about that day all I see is strength. I was in cardiac arrest at 8 am and by 12:30 I was sitting in a chair getting my hair and makeup done. Then I stood for hours as we took pictures. I wasn’t able to dance or get drunk and fight for a bouquet but I was there, and that is strength.

I’m going to try and remind myself of that more often. It’s the first step to not letting this ruin me. I hope you all remind yourselves of your strengths. 


“Life is painful, suffering is optional” -Sylvia Boorstein

I’d be lying if I said that I never choose to suffer. There are days that I don’t let myself suffer. But there are also days that I can’t help but feel as though I am suffering. As long as I don’t get stuck there, that’s what’s important. 

I haven’t been feeling well for over a month now. My heart isn’t staying in rhythm. To be honest, I haven’t felt quite right since I was shocked. I feel as though my anxiety is crippling me. I’ve been there, I don’t want to be there again. The depression is awful too. I feel numb in way. Between all three things, I’m exhausted. Mentally and physically exhausted. I’ve done some research and these are normal feelings after being shocked. It really takes an emotional toll on a person, so I guess it’s to be expected.

I have lost my license for 6 months, which is protocol, but I feel like I can’t catch a break. I so desperately want to be “normal”, not that many people know what a normal life is. I don’t want to carry my phone everywhere I go just in case I need help. I don’t want to have to worry about locking doors, because god forbid I ever needed someone to get to me. I want to feel more comfortable in places other than my home. I don’t want to feel scared as often as I do. I want to feel safe enough to close my eyes at night to get a restful sleep.

With all the stress lately, I’ve had some setbacks with my OCD. I’ve had OCD for years. I don’t know why, but I’m ashamed of it. I think it’s because I fully understand how unrealistic my thoughts are sometimes.

 For those of you who don’t know much about it, I can try and explain how is effects me. It’s an anxiety disorder where you have to combat intrusive thoughts by doing rituals to try and control your anxiety. Doing these rituals are sometimes the only thing that can make you feel better. And I’m not even sure if it really makes you feel better or if it just satisfies your mind into thinking you have control.

A lot of my intrusive thoughts are about death, wether it be me, or a family member. Once these thoughts enter my head, I do rituals so that these thoughts don’t turn into reality. Crazy, right? How can checking doors and window locks precisely four times save someone’s life? I know that it can’t, but this is the illness. I can’t help it. 

I had pretty good control over it for a good bit after intensive cognitive behavioral therapy and exposure therapy along with medication. But with my recent setbacks over the past couple years it is becoming out of control again. I have rituals that I do everyday, but I find myself creating new ones and that’s three steps back in my treatment. 

For example, I have a pair of socks that I was wearing when my defibrillator shocked me. I can’t wear them because then it would happen again, but I also can’t throw them away because I didn’t die. Now every time I open my sock drawer I have anxiety about that pair of socks. These are the thoughts I deal with daily, to put it into perspective, it’s a good day if I can go two hours without an intrusive thought. My battles are not all physical, they are mental as well. I think if I felt better than I would have better control over my anxiety, less intrusive thoughts with less of a need to act out on these ridiculous rituals. 

I have trouble sharing about my mental illness because it’s embarrassing. But I want more people to understand me. To my friends, I’m sorry if it feels like I don’t make an effort anymore. It’s just that I’m exhausted, it takes so much just to get through the work day. I like to be home because that’s where I feel comfortable. And remember, my “comfortable” is still filled with anxiety, panic, doom, sadness, and frustration on top of not feeling well. So just imagine how much worse my “uncomfortable” is. 

I’ll rise up, and I’ll do it a thousand times again. 

It’s been a while since my last post. I’ve been so emotionally drained that I haven’t been able to bring myself to write. With that being said, I have updates. Lots of updates. 

I finally recieved my genetic results. It was found that myself and my mother have a variation in the ANK2 gene. This gene is associated with various problems of the heart. The specific variation found is “of unknown significance” meaning they don’t know if it is causing my issues. 

Only one other person had this specific variation and they died in their early teens. It wasn’t the best news, but it certainly wasn’t the worst. The good thing about it is that the actual gene is known and for the most part, understood. 

In order to help them pinpoint if it is what’s causing my issues, they are going to test more family members. They will test the females with heart issues and the males with no heart issues. If the females test positive they can say “ok, this is probably causing the heart issues in the family”. If the males with no known heart issues test negative then it will be reassurance that the mutated gene is in fact the trouble maker. 

With that being said, because the gene is known, I am being sent to a genetic cardiologist that has experience with it. I’m very interested to hear what he has to say. In the meantime I also met with another electrophysiologist who has a plan. He wants to start by changing my medication. In order to do so my liver has to be cleared first, so I’m set to have a biopsy done. The new medication metabolizes primarily in the liver so they need to make sure mine can handle it. 

He also wants to go back to my original diagnosis of Brugada Syndrome. He wants to go in and look at the surface of my heart to study it for common problem areas associated with brugada’s heart rhythm disturbances. 

He had a lot of confidence. That’s what I needed. I also needed to hear that there were more options. I’m still holding onto hope that there might be more effective treatments for me. 

While waiting for all my upcoming appointments my 8 year long nightmare came true. This past Monday my heart finally needed to use the device I’ve been so terribly afraid of since it was put in. 

Why am I afraid of it? I didn’t know what it would feel like, if it would work, what I would be doing when it happened. Let’s face it, I was afraid that my heart would ever put me in a life threatening state in which I would require a shock. 

I was leaving my house to go to a friends, it was in the evening after work. I got into my car and started to feel my usual symptoms, shortness of breath, palpitations, and chest tightness. Only this time it felt very intense. I felt as though I was about to pass out and I felt it in my bones that I was in trouble. I picked up my cell phone to call my mom for help. The phone rang twice and suddenly I was hit with this very quick, intense pain. My body jerked forward and I let out this noise as if I was punched in the stomach. The only way I can describe it is that it felt like a bomb had detonated in my chest. It took me a little while to realize what had happened. When I finally came to the realization that my defibrillator went off I was petrified and hysterical. 

I ran inside and was trying to tell my mom but I couldn’t quite get the words out. I felt weak, dizzy, and my chest and back hurt. My mom called 911 and I was brought to the hospital. When my device was read it confirmed that I was shocked. My heart rate was going between 200-250 beats per minute for 24 seconds. It showed that the pacemaker tried to pace me out of it a couple times but when it failed the third time it recognized that it needed to deliver a shock. 

It saved my life, and will most likely save my life again. I couldn’t be more grateful for that. But it sure did throw me into heightened anxiety and a bit of depression. It has really been a tough week. I’m scared. I’m truly scared. It’s a reminder of how serious my condition is. But it’s also a reminder of how precious life is. Although I’ve been down in the dumps, I have to move on from this in order to have and maintain a good quality of life. It’s there to protect me, and it did its job. 

Until next time, love your heart and live your life! ❤

Dear life, please stop throwing lemons at me. 

As of yesterday I was supposed to be getting my genetic results in just one week. Key word’s “supposed to be”.

On Wednesday morning I got a call from the geneticist’s office asking to move my appointment. A part of me wasn’t surprised one bit. Nothing has been on time, in my favor, or just plain old on track for what feels like forever now. 

The appointment has been moved to the end of October. Most of you will say “just one more month”. But here’s the thing, it’s one more month after waiting 4 months and then 6 months before that and then 3 months before that and so on. It’s been two years of waiting hopelessly for a diagnosis. 

Most people are not as eager when it comes to waiting for a diagnosis. But for me, it’s not a diagnosis that scares me. Having all these health issues that can’t be explained or fixed, that scares me. 

When I get these results I am well aware of the possible outcomes. One, I have a mutation that they know about. Two, I have a mutation they don’t know about. Or three, not having any mutations. There are 5,000 some odd genes out of 20,000-25,000 that science understands. I’ve been told by multiple doctors that this kind of testing doesn’t usually bring good news, if any news at all. 

Like I’ve mentioned before, the unknown is just to scary. There are many different opinions on the subject , but I myself, can’t take a chance of not knowing something that could possibly bring treatment options. My geneticist wouldn’t have gone through with the testing if there wasn’t some hope behind it. 

The first thing that came to my mind, as well as my mom’s was that maybe they found something and need more time to cross check. I was so excited for these results. I still am. Unfortunately, there is nothing I can do about them not being ready yet, so all I can do is continue to be patient. 

I’d be lying if I said I wasn’t scared. My emotions have been all over the place. No matter what news I get it’s going to be emotional. I’ve had nightmares all week. Tossing and turning all night. The lack of sleep and stress has really got to me. I’m ready, but I’m not ready. How does one prepare for this? Are my results going to give me hope? Or are they going to take away all my hope? 

I will not be shaken | psalm 16:8 |

There’s nothing quite like physically, and emotionally preparing yourself for a procedure twice in about a month and then not having it at all. 

June 8th was my original procedure date. On June 7th, I received a call telling me my procedure would have to be rescheduled to a later date due to equipment failure. Better safe than sorry, but I was only figuring another week or so. They then said the next available was July 13th. I was devastated. How much longer could I go on feeling like this? I was exhausted. I couldn’t bare having to go through all these emotions for a second time. 

July 13th came quicker than I thought it would. On July 12th I was waiting for the call to confirm the procedure. It was the second time I took a week off of work, the second time I lost a few nights sleep, the second time I was scared, the second time I felt brave, the second time my emotions were on a never ending roller coaster. Later that day the call came. I was surprised when the nurse said they were planning on doing the battery change on my defibrillator along with the ablation. She said it would most likely be around an 8-hour procedure. I instantly became uneasy. I was so nervous. I was trying so hard to be brave because the only person more scared than I was, was my mom. 

That morning came, and as my family gathered at my house at 4:30 in the morning it became so real. The drive in was silent, the tears came and went the entire way. Ben Rector’s new single “Brand New” was playing as I watched the most beautiful sunrise behind the water tower. I remember thinking to myself, “this song is so relevant in hopes I feel brand new after this”. 

We arrived at the hospital, the nurse took me in to get started. I met with a few doctors and anesthesiologist. The nurse said that their plan wasn’t set in stone. That’s when my doctor came in. He said that he was weary about going forward with the procedure. I couldn’t believe it. This time I had made it to the hospital, had an IV in and was ready to go. After brainstorming with his team, they decided it would be best to do an electrical study before deciding. The plan was for me to be put under sedation while they tried to map out an abnormal rhythm that they felt confident they could stop. If they could, I would have general anesthesia and undergo the ablation. If not, they would change my battery and call it a day. 

Not knowing what they were going to do was actually less scary than knowing I was going in for the ablation. I said goodbye to my mom, dad, and brothers. I don’t like going back to that moment. It was one of the hardest things I’ve done. I was brought into the operating room and hooked up to 4 different heart monitors. The one directly in front of me was probably a 52 inch, flat screen. They administered sedation but before I was quite out they started to try and induce arrythmias. I remember seeing my heart rate climb and watching the monitor while my rhythm became abnormal. I wanted to be asleep so bad. I didn’t want to feel any of that. Finally, after about 15 minutes I was out.

Upon waking they were prepping me for the new defibrillator. At that point I knew that they weren’t able to map out what they needed for the ablation. I laid there feeling defeated and empty. “Is there ever going to be anything that will fix me”? The battery switch seemed to last forever. I was in and out of sleep, and dreaded being awake. I didn’t feel pain but I felt pressure, and a lot of it. I remember telling myself how sore I was going to be that next day because the amount of force they were using to take out the old device was insane. The team was great, everyone in there made me feel as comfortable as they could, but I am not looking forward to that procedure again. 

Once they finished and I was a little more alert the doctor told me that he wanted to send me to another team at Brigham and Women’s who were more experienced in doing more complicated ablations. He said he wasn’t able to induce a monomorphic arrythmia (meaning one spot in the heart sending out an abnormal rhythm) but instead all they could induce was polymorphic (multiple spots) runs. Polymorphic ventricular tachycardia doesn’t have a good success rate when it comes to ablations.

Since then I’ve decided to wait. I will get my genetic test results at the end of this month. I don’t feel comfortable putting myself at risk for a procedure that’s not gaureteed to work. Hopefully I will have an answer that brings a more promising treatment along with it. My biggest fear is that nothing will turn up but I will cross that bridge when I get there.


What has happened to our beautiful country?

I remember being in school and HATING history class. I thought it was the most boring thing ever! I still don’t know much about American history. Maybe I should educate myself before I speak, but I really don’t think it’s necessary. I think we all know things have taken a turn for the worse. We have actually back paddled a little bit. 

This past week has brought some absolutely terrible news to all of us. It hasn’t just been this past week either. Terrible news seems to be the only news lately.

I’ve been trying to not think about what happened in that nightclub. It’s really weighing on me. I don’t know all the facts and details, I don’t want to. I do not want to even begin to try and understand what has happened. The amount of empathy I have for those beautiful souls and their families is breaking my heart. It’s promising to see people come together after such tragedy. But what’s not promising is the divide a tragedy like that causes. I think we as humans blame things like religion, skin color, and sexual orientation because we don’t want to believe that someone could be that evil. We want to so desperately find a reason for the evil. The thing everyone has to realize is that there is no reason for that kind of evil. There really isn’t. We aren’t meant to understand that because things like that aren’t meant to happen. But we are so quick to place blame. We are so quick to attack the president and the religion that we end up being so blind to what really matters. Coming together as a nation, instead of dividing into groups of censorious people. We need to stop placing blame on the innocent. This world is scary for anyone, let’s not make it any scarier by pointing fingers at stereotypes. Oh, and by they way, it is 2016. If a man wants to love another man or a female wants to love another female, or if one wants both, or if a male wants to become a female or vise versa….who cares! I mean really, why is there people who still don’t accept that. 

I’ve tried to explain this to other people before, many didn’t understand. I do not tend to see things like color, religion, or sexual orientation. I’m very accepting when it comes to things like that. I don’t let it form an opinion for me. I like to get to know someone before I judge them. I honestly will never understand how some people can judge without even knowing someone. I know other people that are the same way, but there needs to be more of us.

It’s comes with everything. I mean face it. A handful of cops succumb to brutality, and everyone blames all cops. The government makes bad decisions and everyone blames the president. A bad group of people on a relentless pursuit to power, and we blame all Muslims. A boy falls into a gorilla enclosure and we blame the “black mother”. A little boy gets attacked and killed by an alligator and we blame the “incompetent parents”. Do you really think that’s fair? It’s not. It’s actually disgusting and disgraceful. 

My heart goes out to everyone hurting right now. Everyone who has lost someone due to senseless violence. Everyone struggling with their sexuality, I truly hope you all stay proud of who you are. Everyone suffering from terrible accidents that are so unfortunate to happen. My heart goes out to America. These brave men and women don’t fight for our freedom so that we can take it away from one another. Stop the hate. Life is too short. 

Be kind to one another. 


On to the next.

I finally got the date of my procedure. It’s continued to be a struggle, but I will say I’ve had a few good days in between the bad. It truly makes me appreciate the small things in life. I still can’t drive, so my brand new car is just sitting in my driveway. There is a plus to that though, it’s staying brand new ;). I’m starting to get nervous about the procedure, but I’m equally as excited. If this works I’ll be forever grateful.

The good news is, I’m going to see my geneticist this coming Friday. Initially, in 2009 when I first started having heart problems my diagnosis was Brugada Syndrome. My EKG showed signs of it and that’s why I had the defibrillator implanted. I went years without problems after that. I’d have occasional flare-ups but nothing that wouldn’t go away on its own. My heart problems started to get worse in April of last year. More hospital stays than ever, flare-ups that were longer and more persistent, resistance to medications, and my un-diagnosis. 

In November of 2014 I was having abdominal issues which led them to find I had an enlarged liver and spleen. I then went to see a surgeon, he sent me to hematology/oncology, and from there to a geneticist. Then the genetic work up ensued. There were a few diseases that would have explained all my symptoms, diseases that would have tied everything together. I tested negative for all of them. In the meantime, the heart docs “un-diagnosed” me with Brugada Syndrome.

Since then we’ve been trying to get insurance approval for whole exome sequencing (WES). This test will look at all five thousand known genes. It will look for mutations between my mother, father, and me. It’s all quite interesting to me. This will be the test I’ll have this coming friday. I’m hopeful this will bring answers to my medical mystery. unfortunately, nothing is guaranteed , and the test will take months to come back. 

My fear is that they won’t find anything, or worse, they will find a new mutation they know nothing about. I’m so incredibly curious though. This has been going on for so long now and I am more than ready to get a diagnosis. Some people say “just live your life, you don’t need to know”. Yes, that’s a good way to look at it but what if there is a treatment? Wouldn’t I want to know? The unknown will kill me before any disease does and thats just the type of person I am. 

I’d also like to know what my future holds. I’ve already had to come to the realization that I probably won’t ever have kids of my own. I’ve accepted a new career path incase I can’t be a nurse. I’ve realized I can’t do many things. It’s not that I’m giving up, I’m just finding a new way to live. It’s not just me, its my family too. I’m not the only one with health issues, heart problems run rampant on my mother’s side. A diagnosis will give me hope, it will give my family hope and I think that’s what we need.