terminal illness

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    Check in with me.. really struggling. Gram in hospital

    My gram is in the hospital. She had a stroke. She has to do rehab then move into assisted living. We will have to empty her apartment and storage garage. Then move her in the assisted living. She also is battling vulvar cancer. Can’t operate because of her age (88) and she’s decided not to do chemotherapy because it will be extremely painful. My gram basically raised me because my parents were working. I’m so worried about her and I want to be with her as much as I can. I’m very overwhelmed. #CheckInWithMe #Hospital #Stroke #Depression #TerminalIllness #TerminalCancer #Cancer #VulvarCancer

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    We are all a little lost, aren't we?

    Have you seen Nightbirde's audition in AGT? She's a wonderful being. She has won many at this point of this competition and has won me as well.

    While the judges were interviewing her before her performance, she said “It’s OK if you’re lost. We’re all a little lost, and it’s alright.” that hit me hard. I froze. I know that this resonates to me in a lot of ways.

    I just learned recently that the company I am working for was sold and will start its transition in 2022. This big change will define 'loyalty' as people who were working in this company for years MIGHT face unemployment, including me. I know change could bring good things as well but mind wandered and rolled over the hills non-stop. The what-ifs poured in.

    I got worried and of course anxious. I am in a middle of building the virtual training library of the said company. Usually, based from what I have read and experience, training is a list priority during the transition phase. It is considered as a cost in the corporate settings. And my mind still rolling, no directions at all. From being a little-to-lost to a totally-lost being. Again, heading to somewhere I do not know.

    This song is keeping me 'okay' or as most of us would say 'getting by' in life now. This song reminds me that it is okay. it is okay. IT IS OKAY... everything will become better. I am writing this essay to help me process it, to at least be brave and face that this is going to happen, it is my reality at the moment. I know it is not easy but, everything will be okay again.

    My heart goes to all of you who feels like they are a little to lost, or like me, totally lost in their life right now. There is help available for you, be brave. I know you can do it. Take that small little step to become better. I know you can do it. We can do it.

    You can listen to her music - It's Okay by Nightbirde on this link - youtu.be/ehA_3AgT8HE. #Nightbirde #Itsokay #Anxiety #Depression #Music #musictherapy #TerminalIllness #UncurableDiseases

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    Never Ending... #CysticFibrosis #TerminalIllness

    Was the first to start this new IV med for MRSA in Canada and one week post admission my pfts went down from 70%-60%... i feel defeated as none of the other meds work for me. I feel as if my mycobacterium is the problem but they don’t want to treat it because it involves treatment for a year straight and only has a little success rate. I can’t say I’m not upset or anxious, because I am and to be honest it sucks. it sucks missing out on your junior year of high school, parties, losing friends, etc. this is the time I need my friends the most and I feel as if they have failed me. I feel like my body has failed me.

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    An illness that is chronic but not terminal.

    Fibromyalgia is just one of a long list of chronic illnesses that many people suffer from today. This illness and many other chronic illnesses make life a burden.

    Last night, someone posted a question comparing cancer to fibro. I feel this should have been comparing terminal illnesses to chronic.

    Terminal illnesses either become cured or they dont. There's a 50/50 chance of survival.

    Chronic illnesses can become manageable but not all chronic illnesses have any cure. There is a 90/10 chance of survival.

    The point is that regardless of what illness you have had, its it's a life sentence. Terminal illnesses may come back, chronic illnesses never leave.

    Everyone, chronic, terminal, mental, it doesnt matter. If you're not okay, you deserve support.

    I see a lot of people who like myself suffer from Fibromyalgia and they give up on the idea of life because they become overwhelmed with worry and concern for their health. This is normal and its it's understandable but chronic does not mean terminal. Every little step is a new milestone. Every day you're alive, you have survived. 💜💪 #Fibromyalgia #TerminalIllness #ChronicIllness

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    I appreciate your kind words but...

    ...kind words don't help me. They don't help me when the dog needs to be walked but I'm still too tired after 10 hours of sleep. They don't help when my kid needs a ride to soccer practice and I make 3 wrong turns because I'm getting confused about where I am and how to get there. They don't help when I clip a parked car because my spatial awareness is bad but I still have to drive. They don't help when there are so many dishes in the sink that they're drawing ants.

    I sincerely appreciate those who ask how I am, hug me, and pray for me. But when I ask them for help, they're nowhere to be found. #CheckInWithMe #AlzheimersDisease #TerminalIllness #ParentingWithTerminalIllness #alone #GettingHelp #needhelp

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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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    Misconstrued... #TerminalIllness #begrateful #Notaoneupper

    Holy shit I’m fucking tired of it
    People misconstruing the words that I put
    In my posts lately
    Understand I love you all greatly
    But I’m sick of people not getting my intentions
    When I mention
    That I’m terminally ill
    Seems maybe it’s a harder pill
    For you all to swallow
    All acting like I wallow
    In my prognosis
    All the while my diagnoses
    Looms over my head

    ::Change of tone::

    Don’t you get that soon I’ll be dead?
    I have to lie in this fucking bed
    So yeah I’m sick of hearing you say
    How fucking hard your day
    Was
    All because
    Of things happening in YOUR CONTROL
    Things within your own damn pull
    Now I realize I’m complaining
    But I’m merely saying
    That I AM here for you in your time of need
    I’m not one filled with greed
    But watch who you’re complaining to
    Because there’s some things I just can’t soothe

    I’m not trying to one up
    But
    It will ALWAYS seem that way
    When I say what I need to say
    Which greatly pisses me off, you know
    Because compassion is what I actually try to show
    If you have a disease that’s totally different
    Your mood control- you sometimes can’t
    But I’m not judging that you see
    Rather I’m judging the drama queens
    The ones who actually own control
    The ones taking their own toll
    On their emotions
    They have such devotion
    To being the victim you see
    Something that completely seethes me

    So stop thinking I’m one upping you all
    Every time I call you out when you “fall”
    I am merely trying to help you out
    I hope my words hold some clout
    They probably don’t
    But I just won’t
    Back down and be treated as a selfish being
    For any of you to say that is just fucked up and mean
    Just understand
    I practically demand
    You see
    That I’m not trying to be
    A one upper you see
    That’s just NOT me
    So STOP painting me in that light
    Unless you’re up for one hell of a fight...
    Just sayin’
    I am no longer playin’
    Stop making me look so bad
    It’s pissing me off and making me both mad and sad.

    21 September 2019

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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.