doesnt_retrieve_gold

🌹 I would give anything to have gone to dinner with you tonight. Thank you for showing me that I deserve to be loved. I love and miss you so very much my dear friend 🌹 P.s I grew this rose myself, don’t be shocked.

6 89 3 days ago

🌿 The every days. Sometimes they are the ones that stretch my weary soul the most. It’s a good day. Even on a good day, especially on the good days, the rot in my bones fails to abate. My catheter table, filled with wipes, drainage bags, sanitiser, don’t fade into the walls to live as wallflowers. My dislocated joints don’t slip back into bed, and continue to shiver on the porch. Even as I feel ‘great’, the twisting pain in my organs never leaves me alone, running its hands throughout my cavities without permission. Sometimes the best days make me the saddest, and it’s a lonely place to live.

5 76 5 days ago

🌻I will never stop fighting for you 🌻

3 74 11:06 AM Feb 10, 2019

Artwork by gilimbaa ™️. White Privilege: inherent advantages possessed by a white person on the basis of their race in a society characterised by racial inequality and justice. White privilege is enormously overlooked and ignored within the spoonie and disabled community. We’re a community that favours eurocentrism, whiteness, and cannot possibly comprehend that another ‘equally’ disabled person could have it harder than ourselves. We do not make space for disabled POC. We do not feature them in our cutesy pastel images of sketched skinny white girls gazing at the sky with an IV in her arm. I am an Australian, white , and non-Indigenous disabled woman. Which means, I am a privileged disabled woman. Everyone gasps ‘you can’t be disabled and privileged!’. They are offended, truly. Because I am Australian, I will use Australian context. Two 26yo women enter a doctors office. Both are Australian. Both are disabled. All of these statistics are the minimum/‘at least’. The woman to my right was (at least) twice as likely to be severely or profoundly disabled than myself. She is 2.1 times more likely to report her health as ‘poor’. She’s twice as likely as me to report having a long-term health condition. She is >1.1 times as likely to suffer musculoskeletal/connective tissue disease than me. She is significantly less likely to be able to access hospitalisation for this than me. She was 10% less likely than me to graduate year 12 or equivalent with a severe or profound disability. She is 17% less likely than me to get employment with this disability. She is 3.4 times more likely than me to have a hospitalisation that could have been prevented with appropriate quality community care. She is >3 times likely to be receiving pharmacotherapy for opioid management like me. And at the end of a lifetime of negligent healthcare & discrimination, the woman to my right is 4.5 times as likely as me to die between 35 and 44. The woman to my right is Indigenous. Do not forget your privilege. Let us work to help disabled POC’s voices rise above in this community. Let us stop being a support community only for the white, thin, and pretty. We can do better. We must.

3 48 10:40 AM Feb 8, 2019

Tell them all I’ve said hi, hope you’ve been well, you’ve been asleep well I’ve been in hell, tell them all I said hi, have a nice day, I’ll be just fine, don’t worry about me- Amy Shark. I’ve been quiet, having slipped within myself to lick my wounds. Each lap of the tongue is a tug in my belly, reminding me. The right side of the bed is cold. I’ve shrunk from big picture to postage stamp. One step, one day at a time. The big dreams quivered in the light, nothing more than shadows on a solstice. Short lived. I’m recreating my nest. A new bed, clean slate. I track my fasting on my phone, and am learning to mindfully consume my meals for one. Cycling in the dark from my sofa, crime documentaries in the background. A distinction or two. Time is measured in assignment due dates, powdered pills, cycling towards greater fitness in the hopes that I can enjoy the sweetness of a neurostimulator tickling my spinal nerves. It isn’t sad, despite how it sounds. It’s just quiet. Quieter, than it was.

22 80 8:49 AM Feb 7, 2019

We finished Trimester 3 🌻 Super hard work in the searing heat (if you have a chronic illness & aircon, you are blessed af). Had one extension of a week, and made an amazing new friend. One step closer to my dreams 🌻

2 66 9:02 AM Feb 1, 2019

🌻From my parents sunflower patch 🌻 sometimes joy comes from the most unexpected of places. Because I was in the midst of a flare I forgot to ask people to be in my group assignment. This means I was randomly allocated with three others. Group assignments are best summarised by ‘When I die, I want my group assignment members to be my pallbearers so they can let me down one last time’. I woke up post flare in a fog and saw that I was group 60, I don’t know how many there were in total. Sometimes the universe works in mysterious ways. I was matched with the most awesome young woman, in the midst of serious treatment for serious illness. We started our assignment as strangers and ended as friends (Probably a world first for group assignments). She worked from the hospital, I worked from my bed. It’s so refreshing to talk to someone who really gets it. We cried over an essay together, and were overjoyed when we finished the damn PowerPoint. I adore sunflowers. 🌻 is my go to emoji. Sure, we all understand the symbolism of them turning to the light. What I love about sunflowers though is how their are a starless night in the centre, and slowly stretch out into a lazy smile. What many people don’t know (including myself) is that the centre is actually made of 1000-2000 individual florets, little individual flowers. It’s incredibly sweet, and pays its dues by providing rich blossom for bees. It takes thousands of parts to create the one whole that we see. Some of us will spend a significant part of our life in the depths of hurt and tragedy. We all take our turn of course. But some stand in line and others move in a while. However, something as random as a group assignment allocation can help us see we’re not the only one in there, slaving away at essays with a sick bag or an IV. And I’m so grateful that I’ve been able to meet someone so wonderful, and who has brightened my days more than they know. 🌻

5 60 11:20 AM Jan 29, 2019

I pad my heels from sand to salt, a jar of glass tucked and stitched into my belly. I take this jar of life with me everywhere. Each planet I collect the colour of its fabric. If nothing else, life creates colour. Deep ochre tells you of my squawk into this world. I entered into the arms of Daughter, a button on my belly giving a glimpse into before. Later I funnelled cobalt atop, becoming Student, a home I would revere. After this came milky white granite dabbled atop as I stuck Just Some Chick onto my breast and tried to ignore the grit beneath my toes. Milk gave way to a long green sludge, rotting from my bones and spilling down the sink as I gasped beneath the surface of forever. Stethescopes watched and scribbled in their notes. Patients don’t know how to swim. All was right, or a little less wrong, when I massaged Sangria Red into the backs of Green, and found a love (or two or three) that was erotic in the way only tragedy can be. They kissed my scars and called me Love. It was all I would ever need carry. Until reality came and knocked, and made me drop that glass. My jar was both too heavy and not enough, and my fingers pricked as I picked up the shards and told them I would be Better. The world tells me my duty, to find myself as though I were never here these twenty six years. In their silence they sell me their promise; once I do, all will be okay. The thing is, I’ve never exceeded at being okay. I’m Van Gogh in tragedy and Mozart in joy. We all wear our roles upon our breast, and change madly between school, mother, patient, lover. We have to; it is Darwin at his finest. We must evolve, adapt, shape shift. With each role I cart this awkward, heavy jar of blood and salt and sweat. As do you. Sure, the aesthetics vary. You may carry ashes, I may carry Hermit Crab Sand. To find ourselves though, we needn’t shed our jars, Konmari style. We’re here. We’ve been here all along; It’s the ground you’re standing on.

2 47 11:13 AM Jan 24, 2019

(TW, Body dysmorphic disorder, SA). I once tried to scoop the whites of my eyes from their cups, two slivers of slippery egg white, quivering like jelly alongside toasted soldiers. I would poke their fleshy slips with a silver fork, searching. No matter how I cupped or scooped, the green grey fungus remained. I would stare into the mirror. One hour became two, and two became a month. Two blackened gaping holes stared back at me, taunting. Roses are red, yet you are not blue. Nor are you green. Not even grey. I was the in-between girl. I measured my worth in the gap between my gums and my lips, the highway between hips, barely there nips. No matter how far I stretched myself in a desperate contortion, I could not bridge the gap between blue and green. My eyes were dirty, two cups of jelly sticking its gaze at my 9 year old legs. I don’t remember the day that I scooped the white jelly with my fingertips and slipped them back into their beds. The beds never made up their mind. Blue? Green? Grey? No, they are none of these things. Maybe it’s time. Maybe it just happened. Now when I look in the mirror, I see two framed pieces of art. The glass is not dirty. I don’t think it ever was.

1 57 10:04 AM Jan 16, 2019

🌲Seasons🌲 I’ve been quiet lately. I haven’t felt like I’ve had much to say, or want to say. I’m undergoing a lot of significant changes in my life. The separation and end of a romantic relationship. Changes in living circumstances and a new housemate. Changes in medications have rendered me perpetually unconscious, missing 50% of the world to an uncontrolled sleep that settles on me like a fog. My life, my body, my world, continues to change, turn, shift, grow. Everybody holds a belief that the new year signals a change in all that we do not want. We resolve for difference; but only a certain type of difference. My life continues to be filled with discomfort, hurt, loss, fear, disappointment, as well as growth, love, success, fun. That never changes. All that changes is what those hurts or loves or disappointments or successes look like. Today I received the news that after over a year of fighting my health insurance and an insurance selection company, they will be honouring their responsibility to deliver me what I was told I was receiving. In May, I will be undergoing my trial of a neurostimulator. I sobbed on the phone with total gratitude. The stimulator is not a cure. It will not rid me of my pain. It may succeed and it may fail. But it’s the most appropriate next step after 13 years of chronic pain management. It’s exactly that; management. Wanting, searching, yearning for a quick fix, a cure, a miracle is a part of everybody’s journey with chronic pain. It’s up to us whether we move forward from that or not. Last year I saw who I could be in 30 years, going from doctor to doctor, treatment to treatment, in the desperate belief that there is a magical fix. Chronic pain and chronic illness requires slow, arduous, patient trials of different tools, different management strategies. You can’t just switch drugs as you please, they usually need a 6 month trial before you can even begin to assess if they help or hinder. If I could tell a chronic pain patient one piece of advice, it would be; there is no secret ingredient. It is slow and ugly and hard and uncomfortable. There is no cure, only management. And you need to find a way to be okay with that.

31 104 8:52 AM Jan 15, 2019

‘I love you Grumpy’. Willow doesn’t look at anyone the way she looks at my dad and Mum, at her Grumpy and Nanny. My parents understand and accept that I cannot have human children, at the very least I cannot carry them. It’s been a hard transition for them. I am their only daughter. I am the only one of their children who could have grown their grand baby in a blossoming tummy. Mum struggled for a long time to accept this. She told me not to give up, that miracles happen, that science is always having breakthroughs. She now understands that my body simply cannot carry a baby. She is the proudest nanny in the world. She tells everybody (and I mean everybody) about her grandoggy. Recently while on a caravan holiday, Mum was bragging about her grandog to a man and he said ‘Jesus you’re lucky. I’ve got a bloody grandbudgie. I’m in the shit at the moment with my daughter because I forgot it’s birthday’. When Willow is at Nanny and Grumpy’s, whether I’m there or not, I know she is having the time of her life. She chases her Grumpy around the yard as he mows and whippersnips. She loves leaf blowing and mulching days the most. She ‘helps’ him garden and weed, where they spend hours together as Dad throws one weed into the wheelbarrow, one weed for Willow. She helps collect the eggs with her Nanny, and gets freshly laid duck and chicken eggs in her dinner. They watch girly movies together, and Willow always sleeps next to her Nanny, and nowhere else. To some people this may seem like a whole lot of adults pretending. The reality is, I will never be able to say to call my parents up and say ‘hello grandparents, I’m pregnant!’. I still hope to reach a place of functionality where I can foster or do surrogacy, and I know my parents will be their fiercest supporters. I also know that if I stick with four legged ones, they will never tell me ‘that’s just a dog’ and I’m so lucky for that.

5 81 10:31 AM Jan 6, 2019

🌻First day of the year🌻I woke up with an extremely swollen leg this morning. I also had no sensation and it was really cold to the touch. My GP was doing the ‘new year day’ shift today, which was a godsend. He sent me to the emergency room. I started to get ready and do my makeup to go (hello hot nurses/docs) and twisted and felt an enormous clunk. I realised my knee had been partially dislocated, then relocated and instantly felt better. I didn’t know it was subluxed beneath all the swelling. The swelling has gone down and it’s only a little tender now. Since being on long term steroid treatment, which I’ve now finished, what is most obvious is that I’ve got fat and puffy. But what is more challenging is developing many severe soft tissue injuries with enormous swelling, for no rhyme nor reason. My right leg is going to be tested soon for chronic compartment syndrome. It’s these little things that doctors don’t tell you about with steroid treatment. It’s telling that they think the worse thing to happen to a young woman is to get fat, rather than develop very debilitating and painful injuries from the myopathy (muscle wastage) from the drug. Other complications of long term steroid treatment are; gastric ulcers, osteoporosis, skin thinning, skin tearing, depression, anxiety, mood instability, edema, myopathy, increased chance of soft tissue injuries, poor healing. Yes, I’ve gained a lot of weight and developed a ‘cushingoid’ appearance. The swelling is going down slowly, I’m very slowly losing the weight. It’s been devastating to my self esteem. However, my body will slowly and safely return to its natural set point. It is the systemic effects which I will continue to deal with for the rest of my life. If you are receiving steroid treatment, talk to your team about the systemic effects and what you can do to help protect you from them. If you’re a healthcare professional, please support your patient to deal with these, and remember that getting fat and puffy isn’t our biggest concern.

8 80 11:17 AM Jan 1, 2019