For some people, your best will never be enough, and your truth will be invisible. Beam your love and light and energy towards the ones who recognise your heart. And be ready to receive the goodness that comes to you. Sit in gratitude, not worry.

Nanea Hoffman (Sweatpants and Coffee)

This quote recently popped up on my Facebook page and was just what I needed to start a new week in a positive way, especially after a nasty event I had to deal with the week before.

I had just experienced some “trolling.” My first ever, which is a bit of a miracle given my patient advocacy work is so public.

It’s never nice to be attacked in this way, but it was a good reminder for me to focus on the beauty in my life, to be truthful to myself and with others, and then those “trolls” just won’t have the power or impact they seek to have.

The trolling was from someone who I wouldn’t have expected. I knew them in a “virtual” sense for over 6 years. They attacked me for “begging” for money through a Gofundme fundraising page. They called me disgusting for doing so and much more. They posted their comment on my public Facebook blog page rather than sending me a direct message to discuss their concerns.

They don’t know me, not really. They don’t know how much Peter and I have done over the years to serve the church, using our own funds to supplement part-time incomes so we could help remote communities. They don’t know how much we’ve supported family and friends financially over the years. There is so much more that I could share, but it’s not necessary to do that here.

Reality verses Assumptions

I appreciate it looks like we are doing so well with a beautiful home, happy marriage, lovely family etc. These are the things I focus on because I don’t want my disease to rule my life, even though it does on so many levels.

The photos of my home and the beautiful things it’s filled with were all purchased before I had to medically retire. We are so grateful we were in a position back then to create a beautiful home as it has now given me an oasis in the midst of a dessert of disease.

I can’t travel, we don’t go out for entertainment, we don’t spend money on restaurants, concerts, movies, theatre etc. We don’t have holidays. I simply can’t physically do these things. Broken bones still scream even in a wheelchair and compressed nerves from a broken lumbar spine cause so many issues with sitting, standing and lying down. Even if we could go out, we simply don’t have the funds to do so.

That’s the reality of having a complex disease. NDIS (the Australian National Disability Insurance Scheme) is great for equipment, carers, cleaners, etc. It doesn’t pay for medical appts, out of pocket surgery costs, hospital visits and treatments, etc. Over 10 years, the financial pressure of these can’t help but become a large budget deficit.

So, I do “home” and I’m so grateful to love my home.

Bottom line is, you don’t really know people without having real and honest conversations with them.

Yet these trolls feel they have the right to be cruel and opinionated in such a public way.

We know many of our friends would have been surprised we went down the GoFundMe path. I don’t think anyone was more surprised than us.

But I’ve learned, “never say never”. Life always takes twists and turns we don’t expect, and I’ve often ended up having to do things I said I never would.

We appreciate the friends who haven’t agreed with our approach but have remained silent and are still friends. Thank you.

We appreciate and are still overwhelmed by the friends, family, patient advocacy colleagues , and the organisations I volunteer for, who have shown the most amazing generosity with their gifts.

If anyone has any questions about our fundraising, my blogging/patient advocacy work, please don’t hesitate to DM me.

I really am an open book.

Thanks for reading, and thank you for your support in so many ways. It’s all so priceless.

All my love

Sam xx ❤️

Medical Musings with Friends

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