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    What food do you miss?

    I am loving my new kitchen and preparing food again, but with all of my allergies, there are foods I can no longer eat, too many to list! Lol. There are some though, that I miss more than others. Regular donuts, pasta and chicken are the three things I miss the most! If you have allergies, what food do you miss?

    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #deathanddying #grateful

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    Almost died… again.

    Yesterday was a really mixed day, I had a great time chatting with and slowly working on stuff on the other side of the house (I just moved in to my new duplex, where I live on one side and my family the other) with my amazing partner and two friends. I am truly blessed to have such great people in my life. 💜

    I have been pushing very hard with both getting my new house ready and getting my old house ready to go on the market to sell it. After my friends left though, my body decided it was time to shut down and I had a pretty scary medical crisis; luckily, my partner is very good under pressure and we were able to handle it. I don’t know though what would have happened had I continued to push today as I have been. 18 hour work days for a healthy person is a lot, never mind in this body. It is hard to accept dying, but dying by wasting away is harder than I thought. My muscles are eating themselves and my bone mass is going as well; my ankle foot orthotics, knee braces and ring splints don’t fit anymore because I am literally wasting away. I just touch something and my skin bruises and tears. My parts don’t stay in place (Ehlers Danlos); my fingers/toes/ribs/knees/hips sublux daily. My bloating is so bad that my skin/tissue is tearing on the inside. My pain is chronic and getting more intense. My heart and lungs are struggling and declining in function. That is just a sampling of all that my body is serving up. My body is saying no thank you and that sucks. I am stubborn and still want to do all of the things that I used to be able to do, but I can’t, and when I try, the consequences are very real. Deadly real. I want to enjoy this beautiful new home I have for as long as I can get. Years, not days. So I have set out a plan to use timers to take breaks and have people holding me accountable.

    As always, life is more good than bad. Despite all of the challenges, I consider myself incredibly lucky. I have amazing people in my life, awesome dogs, I am surrounded by beautiful nature, good food, great books, and new adventures to be had.

    Thank you to all of you have chosen to follow me on this difficult journey, I know it’s not easy. I feel so blessed and loved. 💜

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsDisease #MentalHealth #Depression
    #Anxiety #ChronicPain
    #ChronicIllness #Disability #dying #RareDisease #rarediseaseawareness #Chronicpainwarrior #ConnectiveTissueDisorder


    The universe always rights itself #AbuseSurvivors #Grief #deathanddying #Healing

    Watching him slowly die, The feelings inside me are so erratic, I have moments of sadness seeing a human life suffer accompanied by instant flashes of years of ptorment I endured at the hands of this person. I used to believe that I hated him, but that’s not accurate. It’s much more complicated than that. I hate what he did to me, I hate remembering all the abuse, he’s not someone that I particularly like but being that he’s my father I’ve never been able to fully descend into hatred, my true feelings lie somewhere between ambivalence and dissociative empathy. Growing up I planned abd plotted his death a million times in my mind with me being happier and relieved that he’s gone, given those vivid rémunérations I should be elated that cancer is ravishing him slowly but surely and that on his way to death he gets to suffer like I suffered but I don’t feel elated watching the slow death of even a tormentor doesn’t come with elation it fills me with sorrow not the intense weeping kind the more empathetic witness kind. It’s conflicting abd feels like a betrayal to the little boy who wants and needs revenge, who still needs there to be some atonement for all he had to endure. The other day my sister informed me that they found maggots in an infection that he hadn’t noticed, hearing that I was horrified and repulsed. Y the mère though of maggots crawling through human flesh, I wanted to vomit and my heart sank but I didn’t cry! Isn’t this what I wanted isn’t this se karmic retribution? Why am I filled with regret and anxiety. For someone that was incapable of feeling that for me why do I even care? There are many questions but no answers. Someone told me long time ago to never seek revenge, because the universe will always right itself you don’t have to carry it just give it over. I’ve trusted that bit of wisdom ever since, and remarkably I think it’s correct. I guess in releasing from carrying revenge I’m left with just sorrow in watching someone slowly die. I feel what I feel but I have no hatred I seek no revenge and after all this time I’m healing from the abuse by giving it over to the universe!


    #deathanddying #BreastCancer #cancerpoetry

    #Cancer here’s a poem I wrote thinking about my body after I die from #MetastaticBreastCancer
    On Fire
    Bury me amongst the trees
    Where redwoods overlook the sea
    From atop a crossed mountain
    Where my body will quicken
    From flesh into sand.
    Beneath the needle-bed’s
    Blanket, the fibers of my hair weave
    A way through the wind-filled leaves.
    Heat my voice with borrowed sun
    What once kissed my cheeks
    Where my freckles reached to meet.
    You now hear my broken chords
    Faintly in the the distance unmoored
    Lapping at the salted shore.
    Safely clean I lay down on a million fine grains of sand
    Never feeling myself again I repeat
    To anyone: I am an empty vessel.
    I’ll still wake every morning,
    Habitually my hands still asleep
    Parting the fitted sheets aways,
    Long gone I still reach after you.
    I am the water, then the dew
    Maturing into a pinguid mist.
    The palms clap and sway to
    Conduct the band at noon
    To play a song of our bequest.
    The hour’s imminent.
    Time to ride a wicked dream on
    A silk weaved carpet twisted
    With last night’s ghostly breath.
    Come take inventory of my remains
    Should the tree mark me no more.

    The lumber that’s become of me
    Taken over by the shore. I am a house
    Now - a shelter for a family to whom you
    Lost me once again. My soul holds up
    The walls now, my legs hammered
    Into floorboards, arms encircle
    Every bedroom where the dormers rest.
    My fingers lace together to build
    A painted white front porch,
    That’s my hips now a swing
    I hang there, under the eaves.
    Look up to see my head holds high
    A roof; my back’s now the front door
    My eyes frame the windows, my heart beats
    From the kitchen.

    My birds left the
    Forest knowing where my mouth now sings
    And the woodpecker that lived inside my trunk
    Hollowed out my attic in the spring.
    Let me stand strong and steady
    For at least a hundred years.
    By then, long gone, you built your own.
    And our lives live on, unworldly yet eternally.

    Looking down at the rubble of what’s
    Left of my body in the demolition heap.
    What at all might grow from me who once
    You buried underneath a tree?
    Let me now burn someone’s hands
    A lit fire from my plight.
    It’s cold outside where I once stood
    In the trees and dark of night
    Where I’ll burn vast and luminous
    My spirit gives newborn light.

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