Arthrogryposis

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    Exercising

    Anyone have a good fitness program aside from their PT/OT?

    #Arthrogryposis

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    Mac’s Guide to AMC

    Today is June 30, which for people like myself is a very special semi-holiday known as AMC Awareness Day! But you knew that, right? Of course you knew that today people across the world are posting pictures of themselves in blue to show support for my disability, right?
    Okay, I’m being sarcastic. There are indeed many people wearing blue today, some for AMC, but I know there’s a lot more who have no idea what I’m talking about. And that’s perfectly okay! It’s impossible to know about every disability and how to best show your support. But as someone with AMC, I can’t help but try to let as many more people as possible know what it is. So prepare yourself, reader, to become a more educated person!
    AMC stands for Arthrogryposis Multiplex Congenita, which essentially means “born with curved joints” in Greek. So that part is pretty self explanatory. But because AMC isn’t really diagnosis in itself, it’s more like a group of symptoms that can be caused by something else, there are a lot of different types of Arthrogryposis. The type I have, Amyoplasia, is most common with about one in 10,000 live births. For any type of AMC, it’s about one in 3,000 live births.
    Since Amyoplasia is a condition I’ve lived with all my life, I’m going to focus on that for this article. I’d really hate to give out any misinformation about another type, and sometimes no amount of internet research can keep that from happening. So with the basic idea of Arthrogryposis in your head, here’s a few facts about Amyoplasia that I feel are important:
    1. Amyoplasia isn’t genetic. It’s caused by a lack of movement in the womb, which in itself can have a lot of different causes.
    2. Curved joints aren’t all. Underdeveloped muscles, club feet, limited range of motion, soft skin, fused or stiff joints, and thin bones are some of the other symptoms.
    3. I have AMC in all four limbs, but that’s not the case for everyone. Sometimes only one or two limbs have all of their joints affected, while the others are normal or have less severe contractures. It all depends.
    4. Amyoplasia isn’t really something that can be cured, but it can be treated. Splints, physical and occupational therapy, assistive technology and sometimes surgery can make a world of difference in what people with Amyoplasia can do.
    5. Everyone is different. Because it can have so many causes, and affects different joints and limbs to different degrees, no two cases of Amyoplasia will look exactly the same. This is why it’s important to remember that none of us are experts just because we have this condition, and so we can’t speak for the whole Arthrogryposis (or even Amyoplasia) community. Myself included.
    So that’s it for today! I hope my guide wasn’t super boring, and thanks so much for reading! Thanks also to anyone wearing blue for us today, or who took the ArthroPIEposis challenge this month! I’ll post my picture later today. #ArthrogryposisMultiplexCongenita #Arthrogryposis #Disability #Selflove #CheerMeOn #DisabilityAdvocacy #MyCondition #AMC

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    My Dad’s Advice on Finding Love

    This might be unusual for a teenage girl, but I don’t hate my parents. In fact, I’m really close with my Dad. We talk openly about everything, and unless I’m actually putting myself in danger, he won’t judge me or tell me how to live my life. He always says I need to be independent and make my own decisions, and as long as I’m happy, he’ll support me.
    I’ve not felt the best the last week or so, and with my mom out of town, we’ve taken this opportunity to just chill and watch movies. So far, we’ve seen The Shape of Voice and The Professional, both of which deal with unique and unorthodox relationships. So we were talking, reflecting, and we got off on a tangent about the difference between what’s healthy and unhealthy.
    Partly because of my disability and also because of the awful situations my parents grew up in, I’ve been worried about my future relationships. To be specific, I’m afraid to end up with an abusive partner. I opened up to my dad about it tonight, and here’s what he told me:
    “Don’t get desperate, and don’t feel like you have to put up with behavior that makes you uncomfortable. If you don’t like it, walk. Getting married isn’t some box you have to check to be a successful person, so don’t feel pressured to stay.
    Learn to be happy with yourself. Love yourself, and if you don’t feel like you need someone else to complete you, you’re more likely to choose someone for the right reasons. As cheesy as it sounds, it’s scientifically proven that you’ll be happier if you just find your soulmate.”
    Pretty good, right? I promise, not all our ramblings sound this poetic. This just felt special though, and it seems like good advice, so I figured I’d share.
    #Disability #Arthrogryposis #ArthrogryposisMultiplexCongenita #Anxiety #Parenting #Selflove #Relationships #Love

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    Escaping the “Spiral”

    I had kind of an argument with my dad just now. He wants me to post my writing so i can get my name out there, at least let the world know I exist. If you read my last post, you know I’m trying. But whenever I try to write what’s in my head, I start second guessing myself, over-analyzing what I’m putting down, and soon I’m thinking about my personal flaws and how I’ll never be good enough. Then I just give up on it. I call the thing in my head, which I’ve recently been told is my anxiety, the spiral, after the way it keeps pulling me deeper and deeper and never ends. I think I might’ve stolen that name from Turtles All The Way Down, but it works and I’m keeping it.
    I’m only just now learning how to escape when it pulls me in, and here’s my personal trick for escaping the spiral when I’m trying to write: I don’t read it. I type continuously without giving myself much time to think about the next word, just like I’m talking. Watching they keyboard and focusing on the letters helps keep it from getting overwhelming, too.
    My only published work is the guest blogger articles I write for a summer camp, and this ‘write like I’m talking’ method has really helped me get more written. Because the camp is for people with disabilities, it’s been a really great place for me to discuss my experiences with my Arthrogryposis, and sometimes anxiety and mental health things too. They’re pretty well known and do a lot of different things throughout the year, so I’m really grateful to be writing for them. It gives me the opportunity to write things that matter, and still get the exposure I need.
    Anyway , I got off-topic. But if anyone else has this problem writing with anxiety, maybe this method could help? I know it probably won’t work for everyone, and I might not be explaining it very well, but I just wanted to share. Happy summer!
    #Anxiety #Arthrogryposis #ArthrogryposisMultiplexCongenita #Writing #smallvictories #CopingWithAnxiety #WritingTips

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    Anyone out there??

    Hi, I’m Mac. I’m a nerdy teenage girl with a physical disability called AMC, along with anxiety and depression. This intro is probably going to be way more informative than you need it to be, and I apologize in advance, but I really just gotta put SOMETHING here, so whatevs. I’m just going for it.
    So, I’m a really social person. I like, NEED people. But every summer I do this thing where I completely withdraw from everyone. I don’t really have the type of friends that text first, except for one, and so it just doesn’t happen. I don’t know why I do this, maybe I just figure I’m gonna get no response anyway. Idk. But basically I figured if I had someone who kinda GOT all the disability stuff, and the mental health, maybe I would actually feel fulfilled in a friendship?
    I can’t promise I’ll text right back, or come visit you, or call you every night. But I WILL be the best friend I can be, and I’ll have your back, and I’ll cheer you on, and if you ask me to I will drive my wheelchair straight over those haters’ toes. (Even though I’m anti-violence and I’d probably have an existential crisis over it later.)
    This has been the worst year of my life, and for once, no amount of John Green books, Square Enix games, and workout sessions could fix it. But I think having someone to go through it with might at least make me feel something. So, is anyone out there?
    I’ve been trying to think of something to say here for months, but I’m tired of letting my anxiety hold me back. So even if this is the most cringeworthy post on The Mighty, at least the internet like, knows I exist.
    #CheckInWithMe #Disability #Arthrogryposis #Anxiety #Physicaldisability #Wheelchair #Loneliness #Selflove #Friendship #Depression #LGBTQIA