Cachexia

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    The torment of serious illness #TerminalIllness #MultipleSclerosis #Cachexia #Lupus #ChronicPain

    The pain can be insane
    It becomes rather ingrained
    In your daily existence
    No point in putting up much resistance
    It’s a permanent part of me
    It’s par for the course at this point you see
    But I’ll never truly get used to this
    It can make all my plans go amiss
    It took dreams I’d worked 22 years for
    Only to have my life’s dreams locked behind closed doors
    It’s acceptance that this is the way it is
    Even though you wish to no longer be going through all this
    Doctors, needles, medications, tests
    When all you wish to get is rest
    Listening to the results they find
    Feeling like you’re slowly losing your mind
    Wondering if there’s a lesson behind this
    And if so, what’s the damned lesson I missed
    If I learn it will this spell be broken?
    Or have I just wishfully misspoken?
    The answers remain unclear
    But this is truly hell on earth, my dear
    Chronic and terminal illnesses are no joke you see
    They slowly eat away at your sanity
    They make you question all you’ve ever known
    Make you beg for mercy until these lessons are shown
    Will you learn from them and grow as a person OR
    Will you get trapped behind the closed doors
    Of closed mindedness- refusing to learn
    Until you find your ashes laying in that urn.
    So open your eyes
    Sure you can despise
    The illnesses, but not the lessons they provide
    It’s up to you to search yourself from the inside
    And decide upon which path to take
    Careful not to make a mistake
    Because there’s no do overs in this thing called life
    Watch out- that grim reaper is coming with his scythe.

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    Of terminal illness and other demons... #TerminalIllness #MultipleSclerosis #Cachexia

    Feels like I’m slipping
    Like I’m losing my gripping
    On that positive outlook
    Feeling too shook
    Fuming inside
    Wanting to punch my spirit guide
    And possibly God for allowing this
    Yeah I guess you could say I’m pretty pissed
    Feeling resentment build up
    Worrying I may never have been enough
    To make a lasting impact on those left behind
    I’ll soon be forgotten and this hurts my mind
    I hope I caused enough laughter
    And that I didn’t just shatter
    People with my bad news six months ago
    I just felt you all deserved to know
    What’s wrong with me
    After going through all you have with me
    But now some of you are showing some anger
    And it’s making me feel in danger
    Of losing even more friends
    So before that begins
    Allow me to explain
    One upping had never been my aim
    But when you see people bitch
    About that which
    Is so unimportant in the grand scheme
    It truly can make one seethe
    So instead of getting pissed
    Maybe admit my point here you’ve missed
    I’m just sick of people being so ungrateful
    When in reality their lives ARE full
    Of so much to be grateful for
    Yet Instead they CHOOSE to stare at that locked door
    Sorry but not much annoys me more
    No I’m not trying to keep score
    I just wish you could understand
    Wish I didn’t have to demand
    That you try to put yourself in my shoes
    Before you try to accuse
    Me of selfishness
    That’s the last thing I am in this whole mess
    Still putting everyone before my own needs
    To the point that it at times heeds
    My ability
    To take the time to cope you see
    So stop getting pissed at me
    I’m struggling like a mother fucker, can’t you see?
    I feel like I’m losing my sanity
    And no this wasn’t written out of vanity
    I’m not so obsessed with my own demise
    That I’ve come to despise
    ANY OF YOU
    Just recognize when you’re acting the fool
    Be grateful
    My having to say that feels shameful.

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    Trying my best, dammit!!! #MultipleSclerosis #Lupus #Stroke #Cancer #Cachexia #Depression #Terminaldiagnosis #MS #Flashbacks #PTSD

    “Who would have thought forever
    Could be severed
    By the sharp knife
    Of a short life?”
    The song lyrics permeate me
    I relate to them so much you see
    A terminal diagnosis at 36
    This is total and utter bullshit!
    Which misdeed of mine
    Was such a horrific crime
    That this is the punishment
    That fits the torment
    Of whatever I’ve done
    What else is to come?
    I’m scared of that answer
    I already overcame a stroke and cancer
    Add in the Lupus and MS
    And you’ll see there’s been much distress
    And then there’s the flashbacks right now
    Holy fucking cow!
    How they mess with me and hurt me
    Offering no sympathy
    With the images they re-release in my mind
    So I try to lose myself in the daily grind
    I try make myself busy
    To the point of becoming literally dizzy
    I push myself too hard at times
    Ignoring the obvious signs
    That my body is in distress
    Aye, when did my head become such an immeasurable mess?
    Oh yeah when I was given the nastiest diagnosis
    And a terrible prognosis
    What more do you expect of me?
    I’m doing my very best you see
    To maintain that positive, Pollyanna light
    To show you I’m made of strength and might
    To try to reassure you it’ll be alright
    When it’s time for my light
    To burn out slow
    And yet you wonder why I feel so low... 🤷🏻‍♀️

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    For my son... #MS #MultipleSclerosis #Cachexia #TerminalIllness #Lupus

    I was diagnosed as terminally ill 6 months ago. This is a poem I wrote for my son to get when he’s older. ❤️

    Son, how I love you
    How I completely and utterly adore you
    You are the definition
    Of perfection
    So how am I supposed to tell you a truth
    So shocking its like drinking a 100 proof
    Shot of vodka or whiskey
    Baby boy, will you miss me?
    I will miss your adulthood
    Your parenthood
    I may miss your graduations
    And I’ll be absent for other celebrations
    Like your birthday or Christmas
    Oh how I will miss us
    When I end up wherever I’m headed to
    But please don’t let these words misconstrue
    The level of my love for you
    You alone have been my dream come true
    The one thing providing me enough light
    To not give up throughout this fight
    Son, how I need you
    This may not be fair- I know this is true
    But it’s facts okay
    You alone make me want to stay
    In this cruel existence I’ve been handed
    For my past misdeeds I’m being reprimanded
    And I know that may sound silly to say
    But I can’t help but think that today
    You saved me, sweet child
    You saved me from my wild
    You grounded me when I was over drinking
    You calm my thoughts when I’m overthinking
    You make me feel like a good mom
    Which let me express to you, is the bomb
    Because my sweet, sweet boy I have failed you
    At least a million times and that’s the truth
    I’m sorry I tried to give up all those years ago
    I’m sorry I could no longer put on a show
    To hide the pain I harbor inside
    From this bullshit wild life ride
    But once more I digress
    Though I must confess
    If not for you, I’d give up easy
    And I know that kinda sounds sleazy
    So please understand your breathtaking worth
    In a world that hides from overwhelming truth
    You’re amazing just as you are
    You, my boy, are my shining star
    And though I may not be here a great deal longer
    Boy never forget that YOU have made me stronger
    Wish so much I could stick around
    Praying for more years to be found
    I love you, Landon, endlessly
    You were the best part of all my destiny
    But I’ll be leaving you too soon
    So always when you look at the moon
    Know I’m watching down on you
    As your guardian angel I will stay true
    You will never be alone
    But for now, Boy, know you feel like home.

    25 September 2019

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    Thoughts on dying. #MultipleSclerosis #Cachexia #MS #TerminalIllness

    I’ve been asked what it’s like
    To know you’re losing your life
    To know it’s all being cut short
    Feels like I’d like to sue the courts
    Of both Heaven and Hell
    Whichever placed me under this spell
    Of a premature demise
    Must surely despise
    My many past misdeeds and flaws
    This punishment isn’t without cause
    For I’ve fucked up badly
    Sadly
    But here I digress
    My head is just a mess
    Because truth be told
    I cannot hold
    Anyone or anything responsible for this
    My fortune has always been a hit or miss
    In this life of mine
    Though aspects of this are just fine

    I no longer take my breath
    For granted, and I know that my death
    Is coming my way
    Oddly comforting, what can I say?
    To know the fight is ending soon
    I’m not facing 50 more years of doom and gloom
    Which had mostly been my life up to this time
    Not like living this existence has proven so sublime
    I don’t mean to come off so dark
    Or make seemingly heartless and callous remarks
    But I’m blunt and honest to a fault
    I say what most of you just won’t
    That not an ounce of this shocks my any longer
    Though yes, I’d like to think I’m coming out stronger
    But what’s it like to be in my head?
    To know how close you are to being dead?

    It’s like fuzzy TV static
    Or being trapped in the attic
    It’s breathlessness from panic
    It’s switching between depression and being manic
    It’s oddly wishing for the relief it will bring
    It’s getting angry and needing to scream
    At times it’s a calm stillness in my heart
    While other times gut wrenching that my son and I must part
    It’s creating bucket lists
    Of all the experiences you’ve missed
    Knowing most of which you’ll never do
    It’s seeing that all these dreams you had are never coming true
    Probable missed graduations
    And wedding celebrations
    Missed grand parenthood
    Even though you know you should
    Still be here
    It becomes very clear
    That time is not your friend now
    So you go between extending your head up in the clouds... to burying it deep underground

    It’s hell.

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    Paralyzed #Cachexia #MultipleSclerosis #MS #TerminalIllness #Deathsentence #5 -10years

    I was diagnosed as terminally ill with Cachexia due to Multiple Sclerosis 6 months ago. I’ve been going through a lot of turmoil inside since then and this poem helped me express it. I hope it helps someone else in a dire situation too. ❤️

    I’m paralyzed
    Guess I never really realized
    What I could hide behind bright eyes
    All the pain I could disguise
    I’m paralyzed
    I no longer feel things that I try
    To feel- this paralyzation is all too real
    I’m paralyzed with fear
    I feel panic with every tear
    That I drop down
    Forcing smiles where there’s frowns
    I’m paralyzed with anger now
    And I questions how
    I keep my sanity
    With all the madness that resides inside of me
    I’m paralyzed with fear
    And until you’ve been handed a death sentence dear
    Don’t try to act like you know
    A painful knowledge you’ll never know
    The knowledge that your time’s nearly up
    Fearing in this life you may have been to corrupt
    To end up in a good place once you pass
    So you pray this life always lasts
    I’m paralyzed with sadness
    Just trying to cope with the madness
    That is in my brain
    Would drive you insane
    But I’m paralyzed
    Never knew I could so despise
    A prognosis so grim
    It seems worse than great sin
    I’m paralyzed with fear
    And until you are near
    Death’s door
    You won’t understand this anymore
    Just know that I’m paralyzed.

    15th September 2019
    6:55pm

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