Trust and Terminal

navigating life with a terminal illness

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Author: Monika

Suicide and the soul

Posted on October 26, 2025October 26, 2025 by Monika

I know this subject will be of utmost difficulty for many readers, and will bring a lot of distress. I am so deeply sorry for any of you contemplating suicide or who have had loved ones pass in this way. I don’t imagine this will be my only post on this topic. When I’m feeling…

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TPD Insurance

Posted on August 26, 2025August 26, 2025 by Monika

In 2023 I began familiarising myself with Total and Permanent Disability (TPD) insurance. In Australia, most Superannuation companies will have TPD insurance built into their cover. It is there to help cover costs of living if one becomes permanently unable to work due to injury or illness. The ‘total’ part is a little more loose…

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VCP-ALS disease processes – what’s going on at a cellular level?

Posted on August 17, 2025August 26, 2025 by Monika

A long time ago I looked into the functions of the VCP gene. The core functions are as below: Core Functions of VCP (as summarised by ChatGPT) Okay great, we all gotta watch those Golgi and ER membrane fusions :S But what does this all mean in relation to VCP-ALS and the symptoms I experience,…

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Silver Linings

Posted on July 21, 2025July 22, 2025 by Monika

I never thought an additional diagnosis of Motor Neuron Disease could be a good thing, but wow. Since I was diagnosed in October 2024, I got in touch with Motor Neuron Disease Queensland. I provided them my diagnosis letter, and discovered that they are based (so have their Headquarters) in the same suburb as me,…

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On relationships..

Posted on April 11, 2025April 11, 2025 by Monika

On the cusp of my first diagnosis (“yes.. confirming your gene is mutant”) I was in a long term relationship with a guy who locked up at seemingly any display of sadness or upset emotion from me. He just didn’t know what to do or how to respond, even if sentiments were written down and…

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Disguised blessings

Posted on May 28, 2023 by Monika

I’ve never been maternal. I’ve never been the teenage girl dreaming of her white picket fence and 2.5 children. I remember a boyfriend asking me “well, do you see yourself marrying me? Do you see us having kids?” . I replied that I didn’t know, but I didn’t know if I saw that with anyone….

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Mediocrity..is it really so bad?

Posted on May 28, 2023May 28, 2023 by Monika

You get to thinking about an old school friend, and on a whim look them up online. In a few years, they’ve travelled the world, got the “most gorgeous, kindest partner” and just bought their first house while you’re still in your little home town working an unfulfilling 08:30-5 with only your buzzing refrigerator to…

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About Me

Welcome to my page! Im a 40-something Dutch-Indonesian Kiwi girl living in Brisbane, Australia. This is my story living with a degenerative, life limiting illness.

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