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  • About Cardiomyopathy
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    What's New in Cardiomyopathy
    Community Voices

    Still best friends after all this time

    <p>Still best friends after all this time</p>
    5 people are talking about this
    Community Voices
    Community Voices

    I need all the sleep tips please!

    <p>I need all the sleep tips please!</p>
    27 people are talking about this
    Community Voices

    Feeling trapped by pain, no relief options.

    <p>Feeling trapped by pain, no relief options.</p>
    6 people are talking about this
    Community Voices

    Blood Pressure Monitor recommendations?

    <p>Blood Pressure Monitor recommendations?</p>
    9 people are talking about this
    Community Voices
    Community Voices

    The harder your day is the lonelier you become #MentalHealth #PostSepsisSyndrome #Cardiomyopathy #EhlersDanlosSyndrome

    It doesnt matter how many good days you have, it only takes one bad one to ruin everything. My husband struggles to be my carer on bad days and just said he has no choice but to be my carer. How do you cope with these emotions? I am so much better physically and mentally than I used to be. I try so hard and push myself. I attend my appointments for everything. I never going to be the old me and ive accepted that. I dont think he has.
    #MentalHealth #EhlersDanlosSyndrome #PostSepsisSyndrome #Cardiomyopathy

    1 person is talking about this
    Community Voices

    Planning pregnancy with medical conditions and medications.

    My husband and I are hoping to try for a baby when he gets home in the next couple of months. I suffer from Ultra Rapid Cycling Bipolar, BPD, Dilated Cardiomyopathy and Epilepsy. Can anyone give me any advice on how to achieve and sustain a health pregnancy or any advice atall?
    #BipolarDisorder #Epilepsy #Cardiomyopathy #Pregnancy

    6 people are talking about this
    Community Voices
    Jae Cobb
    Jae Cobb @jaecobb

    What Not Being Able to Drive Made Me Realize About Chronic Illness

    Every child wants to grow up and be able to what they want, when they want. And for me, once I got my license at 16, I just knew I could bust the world wide open. And when I went to college, I felt as though I could do even more, that nothing in this world would stop me. Well, all of that was true and between the ages of 16 and 25, I truly was living my best life. I would get up and go wherever I wanted, do what I wanted, just live life and have so much fun. And I wholeheartedly embraced life until one fateful day at 28, when I began to feel some of the worst pain in my life. And even then, I decided I had to push through in order to maintain some sort of normalcy in my life. But as time has droned on, things have gotten worse and well, I don’t have the freedom that I once had. Recently, I had the biggest wake-up call of my life. Over the summer I was diagnosed with heart failure and cardiomyopathy and this literally and physically took my breath away. What made this situation even worse was that it aggressively advanced my kidney disease, which made me face some harsh realities. You see, I did not know just how intertwined my heart and kidneys were, as well as just how certain activities put stress on my heart and kidneys and made me at risk for complications from my new diagnosis of heart failure. I will give you an example. During the summer, my father had had a major surgery with major complications, so much so he almost passed away from those complications. As a result, I had to make numerous trips up and down the highway, and each trip was two hours one way. Little did I know that all that driving was putting stress on my body. After a month of my trips, I had so much swelling in my legs, feet and hands, in addition to excruciating pain, that I had to go see my nephrologist and cardiologist, both visits were emergency visits because I was so swollen. Not only were my numbers ridiculously off, but I was experiencing severe nausea and vomiting, pain and edema. From these visits, I had to endure medication changes, and was given a new restriction: no traveling long distances, especially if I have to drive. Now that froze me in my tracks. I have always been able to pick up and go and do what I needed to do and handle my business. But now I couldn’t. I couldn’t just go and see my family. I would have to book a train ticket or arrange for someone to drive me. This was mind boggling for me. But in due time, I worked through this new normal and life resumed. Well, I thought it had. Months later my father had another surgery and again he had complications. He seemed to manage through and went to a rehab facility where he excelled. Then he came home and all sorts of things began to happen, including him falling just about every day, and some days his falls were so bad he hurt himself. This became concerning to me and I just wanted to run down and see about him and help my mom, because I just knew she was burnt out. And one day I grabbed my keys to run down the road because dad had taken an unusually hard fall and I stopped. I couldn’t go. I remembered I couldn’t drive. Tears immediately filled my eyes because it was in that moment I realized that my life was no longer my life. I no longer could just get up and go. I even tried to call people to see if someone could take me and of course with it being the holiday season everyone had already travelled to their destinations or they were busy or working. This made me feel worse because I couldn’t even seek help from anyone else. I even thought about a train, but that isn’t safe because we are in the middle of a pandemic and I am high-risk and I for sure would catch COVID in that setting. I was literally stuck. It truly set in my soul that I am stuck, I cannot maneuver in my life and even if I needed to I would have to plan weeks to months in advance because well, I have to depend on others, which I don’t like to do. Now, once I did disobey doctor’s orders and well, it did not end well. I made that drive and for two weeks after, not only was I immensely swollen and ill, I got an infection and realized that it was directly related to me making that irrational decision and making that drive to see my father and help my mother. But it was worth it in order to check on my family and help in whatever way that I could. However, I know what happens when I disobey doctor’s orders and also don’t listen to my body. And now, with my health issues as advanced as they are, I cannot risk making that drive as much as I want to. But I will say it hurts me deeply that I just cannot pick up and go and do the things I used to do once upon a time. It doesn’t work that way anymore. I have truly realized that my life is not my own any longer and that I must surrender to what is, and that is the ever changing course of my condition and that I have to do what is best for myhealth. And while it is the biggest and hardest and most important pill of my life to swallow, I am glad I finally came to terms with what is. I am glad I am in the reality of life now and can move forward.