congenital hydrocephalus

Join the Conversation on
congenital hydrocephalus
47 people
0 stories
13 posts
  • Explore Our Newsletters
  • What's New in congenital hydrocephalus
    See full photo

    Picture Description: I shouldn't be able to spell Hydrocephalus, none of us should, yet here we are.

    Find humor in ur disability. If you find humor in your disability, then you'll get through it.
    #CongenitalHydrocephalus #Hydrocephalus

    5 reactions 1 comment

    I was born sick

    That a actually might be a line from a song, the song just alludes me at this current moment. The #Weather is dreary, and messing with the #barometricpressure , so because I have #Hydrocephalus I feel like poop.

    I don’t know what people go through when they become ill, it’s extremely hard to empathize, with them. I don’t know. I was born at #28weeks gestation, and 2lbs 4oz. I was also dxed with #CongenitalHydrocephalus , #Amblyopia , #Brainbleed and later, learning disabilities and cerebral palsy, #AntiphospholipidSyndrome and #Autism.

    I have been wrongly dxed, and had pills shoved down my throat that made my feel zombified. I’ve spoken to my peers about why my head is shaved and why I have a gnarly scar on my head, or why I can’t participate in a sport.

    But I don’t understand what it’s like to be normal and feel grief about being ill.

    When I get a new dx, it’s just another bunch of signs and symptoms to watch out for.

    And my main concern is, will this shorten my life span.

    Most people I encounter have been dxed later in life, and they have no idea how to process pain, tiredness, taking pills, doctors visits... #Surgery, #Complications . None of it.

    It’s just all so interesting from a ##spooniesincebirth

    1 comment