Ceara

Disabled Psychologist embracing each glorious, sad, painful, joyful day with terminal illness. Living on Peramangk country. She/her.

[Ceara @CearaRickard]

Introducing myself - a thread. I've never been very active on Twitter, public tweeting worried me as a Psychologist. Now I have metastatic breast cancer at 34 and it's a terminal illness. I have decided to approach the time I have left with radical transparency (1/6)

[Ceara @CearaRickard]

@adriel_rose I am. In Australia. But in rural areas here, I get very funny looks if wearing a mask. On a recent long road trip, I made a note in every accommodation booking that I'm a cancer patient and vulnerable to stop accommodation providers giving me daggers!!!

[Ceara @CearaRickard]

@e11_anna @purplepingers Still going! Still advocating for provs too! <3
I'm so glad I was able to help in a positive way!

[Ceara @CearaRickard]

Elon Musk convinced me to leave, but @purplepingers brought me back. At least for now. He's the hero we need.

[MJA @theMJA]

All levels of government could be doing more to help protect medically vulnerable people in Australia from COVID-19, write Dr Rebecca Ryan and Dr Louisa Walsh

https://t.co/2pH2gGRQGl @laqwalsh

[Ceara @CearaRickard]

@GTheWriter_ Hi!

[Ceara @CearaRickard]

@MeanderingPark Yeah, I don't get it either. It's a way of checking in to ensure understanding, and of showing solidarity. We have a whole profession of peer workers because sharing stories can be so helpful. Sigh.

[Ceara @CearaRickard]

@StuddertNatalie There's a lot to read but I really hope it helps. I've written letters both for work and people in my life I know well to address the impairment tables (friends and family can provide evidence!)

If you can provide really clear evidence, it might help. Good luck.

[Ceara @CearaRickard]

Should we just be calling them NDIS plan reviews + S100s? Planner didn't actually know what specialist treats me - but thought she knew what 'treatment' was (hint: physio is not, in fact, a treatment for either cancer or life-threatening immune dysfunction).

[Ceara @CearaRickard]

@MeanderingPark This was an OT, not even at NDIS yet! But yeah, I'll talk it through. It's because they don't think repaving the uneven surface at the back is r&n because maintenance. Which I get, but their suggestion is unsafe and will also detect from my house value 🫠

[Ceara @CearaRickard]

@MeanderingPark Meanwhile I'm told that an accessible path that allows me to get from my back door to the car safely is not reasonable and necessary because the NDIS only funds exiting my house. Sigh.

What we want aren't the rorts in this picture.

[Ceara @CearaRickard]

@TCM_tweets @acweyand Lots of overlap between CVID and ITP out there! I'm glad IVIG keeps you stable. I'm hoping that just staying on azathioprine forever will keep relapse at bay or at least make them less life-threatening but not sure. Median survival from research on ES is about 7 years.

[Ceara @CearaRickard]

@TCM_tweets @acweyand Often even with undetectable platelets I've had no obvious signs. But I've had enough severe relapses at this point to have experienced many of the scary things that can happen with ITP although many people with very low platelets don't get these issues.

[Ceara @CearaRickard]

@TCM_tweets @acweyand I also have two different incurable cancers now - likely in part due to some of the treatments I've needed for survival being quite toxic.

It's been a ride. But I 100% wouldn't be here to complain about it without chemo drugs suppressing my immune system

[Ceara @CearaRickard]

@TCM_tweets @acweyand 2021 I had a nasty relapse and for no apparent reason ended up in multiple organ failure, they thought it was sepsis but no blood culture ever showed infection. Best guess from my team was some sort of cytokine storm related to my immune dysregulation.

[Ceara @CearaRickard]

@TCM_tweets @acweyand It is much more rare than ITP, and more dangerous - described as profound immune dysregulation in the literature. Poorly understood and studied. Treatments are much the same as for ITP but also treatments used in AIHA and autoimmune neutropaenia which I've also had

[Ceara @CearaRickard]

@TCM_tweets @acweyand I've had steroids, ivig, dapsone, splenectomy (spleen 2x size), romiplostim, rituximab, cyclophosphamide, azathioprine. A *lot* of complications. ES is autoimmune and involves destruction of red cells, platelets and (sometimes, including in my case) neutrophils.

[Ceara @CearaRickard]

@TCM_tweets @acweyand Yep. Hum. My platelets have been undetectable for months on end sometimes. Purpura, bloody gums, life threatening bowel bleed requiring 5 units of blood in 12 hours flat. My initial diagnosis was ITP, ES diagnosed 2 years later when haemolytic anaemia started too

[Ceara @CearaRickard]

@TCM_tweets @acweyand Oh hi there! I have ITP too, for me it's part of Evans Syndrome. Mine behaves much the same, massive drops from normal range to undetectable only more call types. Have genuinely narrowly avoided death t related to complications. Rituximab can make a huge difference to us!

[Disabled Trash Witch♿ @StinkRatsCharms]

A lot of chronically ill folks you know online are much, much more ill than we let on. Even when we are fairly open about things. Even when we're positive or optimistic. Even when it seems like we are doing super well. Unless you live with us, you just won't see how ill we are