Brugada Girl ™

I was interviewed by the magazine EP Lab Digest about Brugada Syndrome. I am so happy to share my personal experience with them and have it published. Here is the link for the article for anyone who would like to read it. Enjoy!

http://www.eplabdigest.com/articles/Patient-Perspectives-Interview-Alicia-Burns-BrugadaGirl

It’s been 3 years since diagnosis and my ICD and something dawned on me…I’m not thinking about it as much as I used to!! That is an enormous milestone! When you can go on living and not think about Brugada Syndrome, it’s freedom. Granted, I think about it here and there,as far as precautionary, but it’s not as much fear as it used to be. I ride horses. And right after diagnosis it took me 9 months to get back on horse back. And when I finally did, I was scared to death. I kept thinking all these frightening thoughts, which made me not want to do it. I took a break from it. I gave up an activity that gave me joy and happiness because of fearful thoughts. That is not living. I stopped “doing” in order to “think”. We can’t be prisoners in our minds and bodies. It’s not healthy in any way, shape or form. A few weeks ago I started riding again. And I’m having a blast. I look forward to going and learning and love it. And yesterday it dawned on me that not ONCE in the last few weeks did I think about Brugada while riding. I listened to my trainer, enjoyed the horse and the scenery. This is huge! It took 3 years but Im actually doing what I used to do without fear around my neck like a noose. I wanted to share that with you because I want you to know, life will be normal. Sure, we will always have to think about it, but on a healthy level. Not on a level where it controls you and steals your life away. All my readers have seen me wrestle mentally the last 3 years. I’ve written some very sad, dismal stuff. Some of it is down right frightening, especially for someone who was just diagnosed. It was never my intention to scare a single soul. Don’t forget this blog is MY experience, MY diary, MY journal. It doesn’t mean you will experience anything that I feel or think. It’s only a glimpse into MY personal life. With that being said, all my readers will realize that for me to be able to do my favorite hobby, and smile and have fun doing it, is an AMAZING milestone! I hope all of you HAVE reached it or WILL reach it! You WILL reach it!!

Hello everyone! It’s been awhile since I wrote a post! But the reason for that is it is not healthy for me to think and write about Brugada Syndrome everyday. As it is not healthy for you to read about it everyday either. But once in while I have something new to say or vent about, even if not often. And today I was thinking about how busy I have been. That is one of the reasons I haven’t been writing. Im back in college getting a certificate in Genealogical Research, one of my favorite hobbies! And I am also back in the equestrian world riding horses and tossing around the idea of getting my own horse. Anyhow, this gave me an idea for a new post.Let’s have different perspective, even if it’s only for a month, a week, a day…what can we do now that we have a second lease on life? We tend to talk about what we CANT do with Brugada. But those of us who were lucky enough to be diagnosed, for lack of a better term, get to live. Life has been renewed. We have our treatment and defibrillators and life goes on. Has it stopped for you? Has life just ended and now you are afraid to do anything? Look at it this way, would you lease a new car and never drive it? Why pay for it to sit in your driveway? Why have it if you won’t drive your car? Well why get an ICD if we just sit around and worry about negative things? This is a hard concept, I know. And one that changes daily. And that is normal,believe me. One day we are on top of the world and living life. The next day we are hidden away in our rooms full of fear.Thats okay!! As long as we don’t let it happen every single day. Be sure to LIVE in your Brugada journey. The diagnosis, although it seems like a death sentence, actually saves lives. After all my father would be here if he knew he had it right? So let’s try to look at this all with a new perspective! Tell me what you will do now that you know your are protected with your defibrillator. Are you in sports? What hobbies do you have? Have any vacations coming up? What about little things you can do daily to bring some sunshine back into the picture. I love my genealogy, horses, I garden, I love learning several languages (right now I study Italian and German).I ride my bike, walk my dogs, play with my kids. All sorts of stuff. What can you start today, even if it’s little, to live your life? I encourage you all to do it. Share your ideas and plans with me as it lifts everyone up! You can even email me if you want as that seems to be everyone’s preferred method because privacy. I just like to hear the success stories of people who are not beaten down and broken from Brugada Syndrome. I’m not!

Hi everyone! I wanted to wish you all a Happy Holiday in advance! I will be enjoying the holidays and will be disconnecting for a little while. I hate to bog myself down worrying about Brugada during this very special time of year.Rest assured, I will check all my messages, emails and comments at the New Year.I will answer everyone as soon as possible the first week of January! I just wanted you all to know Im taking a little break so you don’t think Im ignoring you. I will be in touch after New Years! Stay, safe, healthy and well!

I wanted to share something special with you that I just created. It is a Memoriam Fund in honor of my father where you can donate money directly to SADS (Sudden Arrhythmia Death Syndromes) Foundation for research and support for Brugada Syndrome. If you ever wanted to donate a little something to SADS I would REALLY appreciate it if you do it through my fathers fund. I don’t get a single cent. Nothing goes to me, I promise. Its all for SADS. Its just a way for you to see his face, read a little story and do something that would give me such joy at Christmas. Not only does it give me joy that money is well spent but it makes me happy to know many will think of my father at Christmas time. If you cant get directly to his fund you can find him on page 5, Robert De Filippis. Go to Online Community on the right and click on In Memoriam DONATE IN HIS HONOR NOW

There MAY be a possibility that a support group will start in NJ/NY via SADS (Sudden Arrhythmia Death Syndromes). Of course we would need enough people in the area to participate to get something going. How many of my readers are in this area and would be interested? You can message me on Facebook,email me at brugadagirl@yahoo.com or comment here. Please pick from one of the 3 options about which one you prefer A) A larger public support group B) A smaller setting like one on one for coffee or lunch C) Support groups aren’t something you are interested in

Does everyone know what dead man walking means? Its a saying referring to a person who is alive but its like they aren’t really here. Like they are already dead. Let me clarify, I don’t feel that way, but Doctors treat me that way. Not my EP of course because he is my friend and confidante in the world of Brugada. Also my primary Doctor is the absolute best you can find. She’s not afraid of me and listens to me. Pretty much, whoever was my Doctor before diagnosis stuck with me. But to the rest of the medical field, I am a liability. I have noticed, since diagnosis, Doctors are very hesitant to treat me for fear of causing cardiac arrest. When they see me for the first time, and I go over my diagnosis, they look at me like they saw the devil. Like Im some demon that came to steal their medical license or smack malpractice on them. Ive seen the nervousness, the annoyance, the fear. Do you all know what Im talking about? Something as simple as a headache, or a common cold, or some smaller ailment, is like a curse because most Doctors prefer a “hands off” approach with Brugada patients. Look, I understand…a little. A Doctor doesnt want to mess up and cause death. We are already one breath away from it so who the hell volunteers to take us on as patients? But you know what? We are still alive. We will get sick and have stomach aches, headaches, tooth aches. We will still need care for these non cardiac related issues. Stop treating us like dead men walking. “Hey your ready to drop dead any second anyway! The sniffles is the least of your concern!” Im sick of this attitude. If your afraid, then how about informing yourself a little bit? How about becoming familiar with what aggravates Brugada? What meds are forbidden? Knowledge is power…I always say that. Even for Doctors.Everyone needs more wisdom. No one is exempt. Im getting very frustrated as you can tell. I have a lot of little medical conditions. Either they don’t listen to me because heaven forbid I know more about Brugada then they do. Or they treat me like Ive come for their blood by selfishly coming to see them for help? ” How dare you walk into my office with a difficult case!” Im not dead yet. We aren’t dead yet. We still need care for multiple things through the course of our potentially long lives. Stop being afraid or even worse, being down right annoyed that I have the gall to be your patient. Im not a leper who should be cast off to some remote place in the world. I guess we are dead men walking.But none the less we aren’t all heart, we have other needs and problems that we turn to you for care. Man up! Try living with this shit…

I was talking to my mother recently because I wasnt feeling well and also very sick of talking about my heart. She is a registered nurse. She knows as much as a Doctor, I swear! I always bother her with my medical questions and needs. She knows all about Brugada, my diagnosis and the ups and downs that come with it. Wait, what the hell “up” goes with Brugada? Anyway, where was I? After all, she is also a mother who has children with Brugada…me and my sister! She is very familiar with the worries us patients have. And do you know what her theory is? She believes that therapy or mental help should be mandatory with this diagnosis. I think thats an amazing idea!! The mental aspects of this syndrome are major points that I drive home. I let all the people who contact me know, that this is a heavy mental struggle as well as cardiac. What do I always say?…. Afraid to die but now afraid to live! Its not easy going through life afraid of your own shadow, or heart. Its not easy having this knowledge at all. Ive said knowledge is power? Yes, the knowledge to save a life.Your own life. But with that knowledge is sitting and waiting for that same life to be taken abruptly.Minute by minute, second by second, night after night, etc. Ive pondered many times whether life would be better if I invented a time machine, traveled into the past and decided to never seek out a doctor for my heart. Maybe dying young is in fact better than living old, neurotic and full of fear, afraid to move or breathe. I absolutely do agree that mental help/health should be an obligation. I think every person diagnosed and even family members should be told about the mental torment it brings on. We should be warned of this in advance. I think if patients knew it is completely normal and acceptable to be scared, angry, sad, crying, full of denial… maybe it would be a bit better. Maybe if we were told “Go right ahead and purge all those crazy emotions out! Its supposed to happen!”, we might feel better. What do you think? Do you think the psychological aspect of this diagnosis is forgotten? Do Doctors or the medical field even realize this is a problem? I wrote about it before in Brugada Makes You Mental. It is my most successful post and Im happy about that. But I believe more should be done. I believe patients and family members need to speak up and tell their Doctors “Hey this news is depressing! It is hard to swallow! Im scared to death!” Pun intended! How many patients wish they were never diagnosed in an attempt to save their sanity? I do! Isn’t that sad? You get to a point where you think a short life is better than a long life full of angst and despair? I was wondering what everyone thinks about this? Do you feel mental health should be addressed? Have you needed therapy or medication? Anti depressants or tranquilizers to cope? Speak out about it! Don’t suffer physically and emotionally. Claim as much of your life back as you can…

I want to start a new post about something that is brought to my attention often. It’s about how family members suffer in the diagnosis of Brugada as well. Patients can get a little selfish and forget about the impact this has on many levels, especially on other people. It’s what I call the “domino affect.” You knock down a domino and the rest fall. One person is diagnosed and the others will fall. And I don’t mean the other people who will get diagnosed through genetics. Although that DOES count! After all one of us gets diagnosed and then others get diagnosed with us. What I am specifically talking about, getting messaged about and seeing with my own family, is the psychological impact on loved ones. Put the shoe on the other foot. What if we weren’t the ones with Brugada? What if our spouse or parent said to us “My life has just been put in an hourglass. When that sand runs out, I’m done!” How would we take the news? Wouldn’t we walk on egg shells now? Death is usually a surprise. In old age it isn’t so much a surprise. Im not saying it’s not devastating but we usually ARE prepared when someone is old. Brugada leaves no preparation.Its a thief in the night, pun intended!! Take it from me…I wasn’t ready for my father’s death. Even in the funeral parlor, I sat in the very back so I didn’t have to look at him up close. Maybe If I couldn’t see him, he wasn’t really there. When I went to the coffin to pray, I wouldn’t look at his face.This is just someone else laying here, not my healthy father! I didn’t believe it. I felt like he was sleeping. Matter of fact, the denial was so deep, when the whole thing was over, I was the last person in the room. They stripped the flowers and decorations away and he was just alone there in an empty room. I was horrified and stayed there telling my husband “We can’t just leave him alone! Why are they taking all this stuff away? Leave it here!” As if he was still alive and sleeping and it was his bedroom. I felt like I was hurting him by leaving.I felt like he would know I abandoned him when he “woke up.” My point is, no preparation for death is devastating. Absolutely horrible. Brugada does just that. We the patient have to sit around and wait for “the big one.” But our family does too!! Imagine the emotions and guilt they must feel daily. I’m just guessing but I’m pretty sure they walk through life saying ” What if this is our last birthday? Our last Christmas? I shouldn’t have fought with them this morning, what if he/she dies tonight?” Not just us, but our loved ones are walking around holding their breath wondering if tomorrow will ever arrive. So that aspect, of unprepared death, is extremely traumatic.Not just for us patients, but our family.

But what about on a different level…our inability to live normal or even think normal? I have changed certain things about my life. I’m afraid to be majorly active. I’m afraid to be alone in public. I’m afraid to drive. Does my family think that’s sad? Or is it frustrating? I’m sure it bothers them in some way. I have been so anxious since my diagnosis. I was put on an anti-depressant. I admit it. I’m not ashamed to admit it to you all. Life is bad enough with Brugada but the anxiety and depression is a killer. I felt it was best I seek help so I can get at least some of my life back. I feel guilty about all this and its impact on my family but for the most part I brush it aside. I’ll admit it…I don’t think about the impact on others often. I don’t wonder if they are sad or crying or fretting over me. Maybe I should. Maybe WE should. I never really considered it. What I DO consider is feeling like a burden. When I have limitations, I feel like a child that needs babysitting. Like I’m a ball and chain on my family’s ankle and maybe life would be better for them If I wasn’t here. At times I wonder if their life would be easier if they didn’t have to worry. So yes, Brugada patients think about their family but on a different level…we worry we burden you, we don’t worry if we sadden you. Does that make sense? And I can’t speak for everyone. I can only speak for myself. And speak for the emails I received in regards to this subject.

Ive discussed the mental aspect in regards to family. We stress them. We don’t mean to but it happens. For the most part we aren’t aware of it, so lets try to be aware of it to our best ability. This diagnosis has to be a group effort 🙂 But what about the PHYSICAL impact? Some of us won’t work out, we have no hobbies, stopped living and stare at the wall. We are afraid to move, exercise, practically walk… And what does it do to our family when they see those limitations? Are they understanding? Sad? Angry? Maybe both? I personally, at first was afraid of everything. It took damn near a year to get up and about. I danced and rode my bike at the gym a few months after surgery. But something big like horse back riding was a 9 month wait!!! But I’m here to talk about it! Nothing happened! I swim, dance, take walks, exercise, gave birth to my son! Hell,thats bigger than any activity I can think of lol! My family encouraged me to do things but never forced it on me to the point I was uncomfortable.They understood it was all in my timing. Even today, 2 years later, it’s my timing. When I’m ready to do things, I’ll do it. As frustrating as that may be for family, patience and understanding is imperative. Like I said, it’s a group effort…we need to keep living so our family members can live. But our family has to be patient. I asked a few of my family members how they cope with my diagnosis and limitations. My mother feels that she can cope well because I have an ICD. Although she cringes at the thought of what Brugada does, she knows the necessary protection is there. She’s happy I’m an advocate for it and learn and research so I’m fully educated about what to do and not to do, not just for me but for my kids with Brugada. Other family members say faith in God and his plans for me trumps all..he’s in charge and just accept that and be at peace.I know not everyone has religion but I am Catholic and I couldn’t handle Brugada without my faith so I agree with them. They also cherish each day with me. I sat with my husband to ask him how he feels. The day I was diagnosed he bust out crying hysterical which is highly unusual. The man never cries. The scariest part for him was my life WITHOUT an ICD, waiting for surgery. But like my mother, he rests easier now knowing I’m protected. Yes, he’s aware of inappropriate shocks and electrical storms but he said his coping mechanism is simply, don’t think about it. He feels if he dwells on it he will become neurotic and that will affect me and our children as well. He hopes for the best and takes one day at a time like me. He just doesn’t think about it. I can say one fear of his he won’t put to rest is me driving. He’s down right terrified of me driving. He won’t allow me to drive with the kids unless absolute necessary. He’s uncomfortable with me even driving by myself…I will faint, crash and die.That is what he envisions. If it’s possible for him to drive me somewhere, he will do so. But I don’t want to add to my anxiety so I DO drive myself because I also don’t want to become a neurotic. Am I scared driving? Hell yeah. But at some point caution has to be thrown into the wind and say…screw this! I’m alive and I have to live. Its essential. Its essential for physical health, mental health, our family members health and children’s health. Cope! Get up and get out! No one is immortal. How do you feel about the impact this has on your family?

I’ve reached 100 countries!! I can’t even believe it! I never thought in a million years anyone would be interested in my rants about Brugada.Its merely a public diary so to speak. Thank you all