Congenital Heart Defect/Disease

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Congenital Heart Defect/Disease
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    I'm new here!

    I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾

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    Welcome new members! Introduce yourself here and share your CHD story.

    This group is for any adult with CHD! Feel free to ask questions to the group. Post your story. Or just share your experiences living with CHD. #CongenitalHeartDefectDisease #adultchdwarriors #ChronicIllness #Disability

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    MCTD warrior - having it all, but not what you want.

    It has been quite a few years where I haven’t felt myself.

    Suppose, one day going to bed and feeling fine; you just had the best evening you could possibly have. The glow in your eyes that sparkle the room when you smile; the joy that flows inside of you - the feeling is explosive. So there you are, Planning your next day, what to wear, how to style your hair. Pretty Normal isn’t it? Now imagine waking up in the middle of the night with a high degree fever, aches and pains everywhere, your vision is doubled- bad enough you’re already blind (me) and then not being able to utilize your limbs; suddenly you feel paralyzed, stiff as a corpse and feeling pins and needles shooting from your fingers to your toes, back up your spine and onto your head; all over - needing help to get up and wondering what went wrong.

    This was how it began – but what’s one more obstacle in my life..so, I brushed it off and went on with my day.

    Let’s Visualize yourself going to start a meal, and suddenly your hands went numb and the hot pie of pizza is now sitting on ur hands, just right before it slithers off and onto the floor; you can’t even move out of reflex! What happened?! You just watched it all fall apart and you didn’t even feel the burn?!!

    It’s now time To shower and your arms can’t even bathe your body. The pain is too much- your head is down feeling terrible and then you see the drain…covered in your hair! Not a few strands but enough to make mini dolls.

    Can you see yourself driving and coming to a red light, and you can’t move your foot to hit the brakes so you use your left foot instead, because your entire right side just went. Imagine the panic seeing cars having the right of way and you’re wondering what the hell is going to happen to you if you don’t get this leg to move and stop the car; and so you quickly remember (thank god I didn’t forget) that there’s a second foot! Eureka!

    How about starting a conversation and mid sentence you forget the entire topic - or you start to slur, stutter, or can’t pronounce a word. Your intelligence went out the window and you stared at it just fly away because you’re so lost for words, it’s brain fog. Imagine your eyes burning for no reason as a fever spikes and Your heart palpitates faster - and suddenly you feel like you’re having a heart attack. You can’t take a breath in, you can’t move, and the person next to you can’t help but watch. That was me.

    Now each night is restless- I’ve become insomniac.

    What would it do to you not being able to move your neck at normal quick speed, too stiff, or in extreme pain and you feel it hot and throbbing and have no idea what to do. Causing chronic migraines and dizzy spells. [For months I thought it was due to a car accident].
    Imagine pretending for many years that you’re ok just to spend some quality time with friends and family - and yet they see you as anti social or weird…prepping for a huge gathering that you can’t partake in due to the pain and sickness of doing something you love to do, like cook. (Me).
    How’s about not being able to eat a meal without being sick. I don’t mean gas and sorts of…I mean sick, suddenly the flu, you’re hot, feverish, clammy, nauseous, congested, sneezing, runny nose, to the point you’re pretty debilitated. Over eating food? Since when?!

    Heck, imagine waking up to make your youngest child breakfast before taking him to school and you’re vomiting in silence so he doesn’t worry. After all, he’s here for the school year with his father and you- the last thing you want is to have this child report to is bio mom back home any such details that can make you seem incompetent to take care of a life - let alone your own.

    I have been through too much to fall apart now and let anyone see it - that would never happen.
    I triumphantly did as I said…. But then this nightmare became my reality and I was told to make it just that - my reality. But how when your support system isn’t supporting - too many folks and doctors made me feel this was in my head or saying there’s nothing wrong as if I’m seeking attention. Who would do that?! It was time to take care of myself and figure this all out.

    Now, imagine when you go to regular doctors to get all of this checked out, and they ask where does it hurt— everywhere! But that wasn’t enough.

    Is this my life now? What’s going on with me? I’m tired of hearing people telling me all I do is sleep and complain I’m in pain all because I couldn’t do anything- let alone walk. Here I’m thinking Ashton K. was going to jump out and prank me - but nope.

    So, my PCP sent me to get blood work and yup, there was the answer: Ma’am you have a disease.

    Um, huh?…he can’t explain because it’s not his field….so now you’re off to see a specialist/Rheumatologist- let’s assume you see this specialist and they send you for more blood work; now pretend for one minute this specialist never called you in for your results (thanks Dr. Alexander Torres/FL).

    You call, leave several messages, finally get called in and he still doesn’t have your results—BUT you do, because you’re quick wit has you tracking all your health records on apps- so Quest, thanks!

    Imagine the specialist telling you he isn’t going to take your $hi!$ because he’s the doctor and to get the hell out of his office - when you answered his question that came with lack of professionalism and a Hawaiian shirt and cowboy boots calling his assistant “mama” because that’s what he called her, when asking to check the report. What was it he said to me? You’re wondering, visualize your doctor walking in with such attire, sits down, speaks to his assistant with pet names and then turns around spreads his legs open like some stranger on the NYC subway, he clasps his hands and says with a giggle “so what’s your problem now Araceliz”

    I’m Sorry, excuse me? What?! Am I now developing hearing issues! What did this man just say? So I giggled back and asked him what planet was he from that he felt comfortable to speak to me with such mannerism? How I’ve waited for 2 months to be seen by him -the very same doctor that requested the tests and yet never called me in for such results…At that point he didn’t like it and was very offensive (above). I then stormed out with, let’s say, not nice words.

    Back to the drawing board - I kept feeling more and more sick as each day went by. My hunger to fix me was on max; then I I came upon Dr. Strukova/RA doc. She read my results and did more work to compare previous results…there it was, what I have been waiting for this whole time. An answer. A thing. A name.

    I have what’s called - mixed connective tissue disease (MCTD/Systemic lupus erythematosus) (and others in the bucket I can’t name at this moment); which attacks me internally along with fibromyalgia, herniated discs in neck, scoliosis and arthritis in my back to name a few. Great, all these years the rash on my face from the heat wasn’t rosacea. The fatigue wasn’t heat poisoning. I started noticing that the sun wasn’t helping me. Heck, I couldn’t even tan like I use to.

    I don’t want this life - I don’t wish this on anyone
    One day I feel like Wonder Woman, the next day I’m Oscar the grouch.

    What I’ve listed is just a small version of what I go through, I was also diagnosed with congenital heart disease. Oh! B4 I 4get I’m on a vegan/fish diet, too! So what was once a lean hefty curve, is now a thin noodle - welcome back 14 year old 129lbs me.

    I dont normally report my personal matters. But I am hopeful that by me sharing this, together we can all raise awareness for a rare disease and by some chance, discover a remedy.
    If there’s one bit of advice to share with the world, is to connect with someone before you correct . I have found that the best and sincere audience are those who can’t see me, sometimes those you love - well, are just those YOU love.
    #MCTD

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    I’m new here!

    Hi, my name is JoshR. I'm here because my son was born with a CHD and looking to join a community of people dealing with the same things.

    #MightyTogether

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    I’m new here!

    Hi, my name is CarlySmith011. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Anxiety #Depression #PTSD #EatingDisorder #Gastroparesis #congenitalheartdefect/Disease

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    I'm new here!

    Hi, my name is marilynvicious. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #OCD #HeartDisease #CongenitalHeartDefect /Disease#RareDisease #DegenerativeDiscDisease