Expensive shoes

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Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

Guinea Pig

Published April 28, 2017 by helentastic67

Guinea Pig

Guinea Pig

I find I’m often asked to take part in trials because I seem to respond well to treatments and I’m articulate enough to tell people what’s going on.

There are Pro’s and Con’s to this.

The simple ones being I get to do things I can’t afford and aren’t available through the public medical system. The down side is, I get given less than spectacular equipment that helps them get the results, ongoing funding things they need after lying to me about all the great things they will do/give me.

Guinea Pig 1

All while sabotaging me from getting what I need. Case in point, I was part of a Botox trial to stretch my calf muscles and improve my walking and fix my hyper-extension, so in the time I wouldn’t need a knee replacement.

I was told I’d be put in a cast and if I managed to not fall over, they’d send me home. I’d be recast after a week in a slightly more uncomfortable position (calf to toes) and maybe again for a 3rd and 4th week. During the 1st and 2nd week I left the hospital in self-funded taxi’s (taxi’s I couldn’t afford) and went back to my neighbourhood to appointments I couldn’t live without.

I did get good coffee.

In hospital, I was bullied and not given pain meds my own GP prescribed me. I had supplied my own meds and while kept under lock and key, they refused to give them to me, adding to my stress.

But even after two weeks, they refused to let me go home. They insisted on keeping me in despite knowing it stressed me and I didn’t need to be there. They kept insisting to keep me in because they thought I’d get my cast wet if I went home. My cast got wet! EVERY SINGLE SHOWER I had in hospital.

Eventually, I think I growled sufficiently at a new doctor at the rounds and they set me free.

  • Public hospitals: They have a body in a bed and they get funded!
  • Every person their cat and dog came to visit me, access me, learn from me, all so they can tick their boxes and get more funding.
  • They told me they’d send me home with shoes they would fund. I could no long wear my beloved shoes.

 

Orthotic shoes

On the way home mum took me shopping for some temporary shoes, as there had been nothing but excuses. They eventually did fund me shoes that wore very quickly, I nearly twisted my ankle and it meant after 4 months needed replacing, I could get another pair funded for 12 months.

Expensive shoes

My mum paid for the cost expensive pair of shoes, I’ve ever owned and they are medically approved shoes. That I then had to find someone to reimburse my mum. She is not wealthy.

I still have my hyper-extension 2 years later.

Guinea Pig 2

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