A Cyclone, Chaos, Unexpected Miracles and Shortfalls

Hi Everyone,

Just wanted to give you an update on a day of miracles after a horror movie the previous day.

We had no power for 4 days during the cyclone.

I was beside myself with tiredness, and in the midst of everything, my right elbow broke.

My condition has worsened to requiring 24/7 care, as you know, and I really should be in the hospital. If I could get some peace and quiet to get some equilibrium, it would help, but I just can’t.

My OT wants to get me an electric single bed asap, which I have NDIS funding for, but not enough funding for a companion bed for Peter. So it was all going to be a logistical nightmare to organise and not something I was up to doing.

So yesterday morning, I wrote an email to my entire group of people invested in my and Peter’s care…OTs, Physio, Caring Agency setting my boundaries. I asked to put off the bed until April when my step daughter and husband are coming to visit and I said I had to have a team of core carers who didn’t require me training them for 2 hours.

I had no idea what the outcome would be, but I knew I had to send it.

By mid-morning, miracles began to happen.

Firstly, the caring agency is the same for both of us, and the NDIS dept and my Aged Care department have worked together to allow my carers to care for Peter.

Next, my caring agency gave me one permanent case coordinator who is ensuring I have only my core carers visit.

Then my OT rang to say she couldn’t believe what had just happened.

The company who are providing my electric lift bed rang to say they could use the equipment hire budget in my NDIS plan to give Peter a hire bed. Normally, that would be a second-hand bed but they decided to custom design Peter’s bed to match mine and at the end of the 3 Monty hire period either Peter’s Level 4 will come through and pay the difference for him to own outright or our family will pay the difference.

I just can’t believe it.

Then the next miracle happened.

My OT received a phone call from the NDIS manager who reviewed my plan 4 weeks ago and increased funding for additional at home care.

She was ringing to say NDIS wanted to commence a quick plan review for me to increase my caring funding further so I can have a 12 month 24/7 care plan. It’s unheard of for them to do that!

So, while none of this changes my pain and extreme exhaustion just now, it will begin to make a huge difference to my well-being.

However, as other chronic illness warriors know what it’s like all too well we are struggling with out of pocket financial costs.

Peter has been in and out of hospital for the past six weeks due to a non functioning bladder and infections. As a result, he has required a catheter that has created unforeseen expenses we just didn’t see coming, for day surgery, his urologist, and with his catheter supplies, which are $1000 a month and none of which we can afford.

His “My Aged Care” level 2 Government funding isn’t enough to cover it, and he already receives other incontinence supplies through other Govt funding, but that will not cover additional new products.

As usual, we will find a way.

I can’t thank my readers enough for all your support.

Thinking of you.

Lots of love Sam xx

Medical Musings with Friends

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