Busy Living…

I realized I havent been on my blog for almost a month!! I say sorry to my dear readers that look forward to what I have to say. Do you know what the problem is? There is only so much that can be said about Brugada, only so much I can talk about. Just the same as the doctors are still learning and dont know much, we as the patients dont know much. All I really need to know is I have it, Im protected with a defibrillator, I know which children have it and a plan is in action to monitor them every 6 months. From there what can I do? Not much but live my life. Its been 6 months since my defibrillator has been put in. Im at a point now where I dont think about it much. Ive become accustomed to it. I dont stare at it all day in the mirror, google everything I can about Brugada or talk about it non stop. I dont fear death. Is it coming? Probably but Ive come to respect that this little machine in my chest will take care of that. So what else can I do? LIVE MY LIFE! Brugada is extremely scary because it takes you without notice. It happened to my father. But thats not going to happen to me. I feel blessed. Yes, I said BLESSED.Lucky enough to find out I have Brugada AND receive treatment. This means I will live, I will watch my family grow, I will have time with everyone.I cant sit and wait for a shock though. I cant wait on edge for V Fib. You have to learn to ignore it. Take the precautions your doctor said but in the long run ignore it. If brugada wants to steal me it will. But my ICD will change that fate. My life now is getting my kids off to school, waiting for autumn and the cool days and buying pumpkins. Planning Thanksgiving dinner and I cant wait for Christmas. I wake up with all the plans I used to have. I think about all the weeks and months ahead with things to do. Brugada no longer invades my thoughts. Why should it? It will be reversed in about 8 seconds from an ICD. I got an ICD to live, to be free, to not be scared. We all have to come to that point where we spread our wings and fly and accept what we have and live life normal. It takes time.It really does. But it will come. One day you will realize the whole day went by without thinking about it.Then a week went by without a thought. I’m not quite at that week or month mark yet, but I WILL get there because I WANT to get there. Dont obsess!

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8 Comments (+add yours?)

  1. Lees
    Sep 09, 2015 @ 05:13:43

    hi Alicia I love this post I can relate to it a little! I realised I never updated you on my diagnosis. I had my ajmaline test and it came back as in conclusive for a diagnosis of brugada but it did have a pattern of a type 2 in places- so what’s next?? well my consultant ordered all my family to have ecgs and they all came back fine he’s convinced i am ok but i have been given the option for an Implantable recorder for a few years and see if it captures anything. so like you say until then you keep living what else can you do!xxxx

    Reply

    • AliciaB
      Sep 10, 2015 @ 10:09:51

      Hi Leanna! Well I guess intermittent Type 2 is better than Type 1 !!! Im glad they are doing an implantable recorder though. Its better for them to keep checking than dismiss it all together. Im hoping it remains fine. Let me know 🙂

      Reply

  2. Diana
    Sep 08, 2015 @ 08:50:02

    Hello 🙂 my daughter is 15 and just had an ICD put in a few weeks ago.she is diagnosed with brugada. She is being so tough but I know she is scared. On her first day back to school she was shocked five times because the diffibulator was picking up on something that it shouldn’t have. As a mother I am having a hard time getting by. I’m scared every moment. I don’t want her to leave my side. I know within time we will both feel better but it’s been hard

    Reply

    • AliciaB
      Sep 10, 2015 @ 10:11:18

      Im so sorry that happened to your daughter. Did they figure out if it was an appropriate or inappropriate shock? Appropriate means she was having arrhythmias and needed the shocks. Inappropriate is more like a malfunction of the ICD

      Reply

  3. jennifer
    Oct 07, 2014 @ 09:34:12

    I was just diagnosed with brugada on 9/25/14. I feel scared and overwhelm with new condition. Everyday i think of it… worried about my kids having it too. I hope to get my life back to normal again.

    Reply

  4. Andy
    Sep 16, 2013 @ 01:36:26

    Hi Alicia
    Woww now you are almost there. No, you are further then I am already 🙂 Because there is no day I don’t think about the ICD. But I don’t think about it as a pain. I think about it as a livesafer and a insurance.

    Reply

    • aliciatburns
      Sep 16, 2013 @ 08:38:59

      Andy, you are fine! There is nothing wrong with thinking about your ICD if your positive about it. You know its there to protect you and help you. Thats much better than looking at it with fear and hate. We all accept things at different paces. We all have good days and bad days. Your doing GREAT Andy 🙂

      Reply

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