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Diagnosed with Ebsteins Anomaly and other health issues

Discussion in 'Health - Physical/Mental' started by Ambient Dawn, Nov 29, 2019.  |  Print Topic

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  1. Ambient Dawn
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    Ambient Dawn Lesbian Fiction Author
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    Hello everyone,

    Surprised I am posting again but I have notice people are posting what goes on with them. Well, in my case I am disabled since birth with a bad heart condition called Ebsteins Anomaly (is a rare heart defect in which the tricuspid valve — the valve between the upper right chamber (right atrium) and the lower right chamber (right ventricle) of the heart — doesn't work properly. As a result, blood leaks back through the valve and into the right atrium.) I have had to two surgeries so far for my heart in 2011-2012 and it does effect some of my day to day life like handling my daughter, doing laundry, dishes, moping, sweeping, moving furniture and so forth it is a pain in the butt let me tell you. My daughter is 9 by the way feels like she is going on 19. I have to live with my parents because it is a struggle to breath most days. To add I have other health problems: I have been introduced to Psoriasis when I hit 30 years old, I have always had bad hips, knees, and lower back issues(no, I am not over weight either) this has happened since I have had my daughter in 2010. I have depression and anxiety due to men mentally abusing me that includes rape from my teen years. I am not young anymore though even in my younger years I still struggled with day to day life including going to school and staying in mostly cause of stress. I do not handle stress well even as an adult, I have to keep reassuring myself to stay calm and don't over react. My biggest career is being an author and it has built me who I am inside and out even though it can be stressful, I am allowed breaks too. This is me, and this is all my health problems.

    I don't meet others like me but I know they are out there.

    Thank you

    ~Amber
     
  2. BiBiLife
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    BiBiLife Forever in debt to your priceless advice.
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    Long, gentle hug for you.
    ~ BiBi
     
  3. Bornunderabadsign
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    Bornunderabadsign Transfeminine Natural Disaster
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    *hugs*
    --- Double Post Merged, Nov 29, 2019 ---
    *hugs*
     
  4. Ambient Dawn
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    Ambient Dawn Lesbian Fiction Author
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    *hugs*
    --- Double Post Merged, Nov 29, 2019 ---
    *gentle hugs back*
     
  5. TallGrl
    Caffeine Fix

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    Fellow psoriasis person- my introduction to it was at 8.
    Have you had your hips, knees ect. checked for a diagnosis--psoriatic arthritis?
    Not that getting a diagnosis necessarily helps, but can it hurt? I do not know.
    I believe my other conditions are explained on corvos' post in health on fibromyalgia.

    Others are out there, for heart conditions to skin to joints to anything else. I just don't seem to meet them in real life.

    Anyway
    Hugs for everyday you are managing, and hugs for the days that suck.
     
  6. Ambient Dawn
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    Ambient Dawn Lesbian Fiction Author
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    I have had everything checked by my family doctor and the hospital an they have told me everything is fine even though it hurts a lot. As always they don't believe me either. My conditions are invisible to doctors pretty much. My psoriasis I haven't seen for a doctor because I use off the counter medication that helps keeping it under control like cinnamon, fish oil, psoriasis lotions, and turmeric for pain.
     
  7. BiBiLife
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    If it hurts, it is NOT fine. I hope you can find a doctor who will LISTEN and take you seriously, because you should not have to live in pain.

    *Sorry for getting shouty, it's just doctors minimizing the concerns of their patients really makes me angry.
     
  8. TallGrl
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    I'm glad that over counter stuff is effective for your psoriasis- tar has been recommended to me also for psoriasis (also overcounter is one of yours stops working?) coconut oil is also good if you have psoriasis on your scalp/ in general.
    In the UK it feels like the doctors try to help but have to fit you in within 5 minutes and so never truly actually pay attension to what you are saying.
    I hope you can find/is feasible to find a doctor speacialist for you. Daily pain is life destroying and unfair.
    I know basically nothing about how the healthcare system actually works for individuals in america, so have no advice on how to tackle unhelpful doctors there.
    hugs, and hope.
     
  9. Ambient Dawn
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    Ambient Dawn Lesbian Fiction Author
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    My scalp I found a hair product on Amazon that works well as long as I remember to use it at least twice a week but yeah, it is pretty much under control for psoriasis.

    American doctors are just as ignorant so you aren't alone not all are but a good chunk are they couldn't care if you had surgery twice and need a third one, they don't care at all.
     

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