I am very comfortable with our GP, Stephanie, who we now see once every four weeks with our "list". We always promised ourselves that we would never turn into our parents and discuss medical matters. One of our artists, Arlene Puddy put aging in its place by declaring that we'll never feel old if we don't admit to being old. We wholeheartedly agree with her. The problem is looking in the mirror and realising that our twenty/thirty/forty year old eagerness and zest is no longer mirrored in the appearance and function of our physical selves. We don't feel middle-aged but our bodies suggest otherwise.
Today we discussed increasing numbness in Michael's feet - ultrasound ordered to ascertain the need to see the vascular specialist or not.
Michael's problematic wrists and hands - new referral to the Boy Wonder for his right wrist and lower arm.
Setting up a new care plan for a podiatrist to care for Michael's feet.
Checking spots on my face for skin cancer. Fortunately, these were only sun damage.
Referral to the Boy Wonder over increasing pain in my right wrist/arm and an ultrasound for a possible ganglion in my hand.
And finally, a bit of a rant on my part about the challenges of my daily life, much of which currently revolves around the National Disability Insurance Scheme, medical costs and wait times.
How's this for a great idea? Alex receives around two thousand dollars over three years for transport funding, as he doesn't drive and he does have to catch Ubers and Taxis occasionally as well as using public transport. This funding used to be paid in fortnightly lots into his bank account. Now, some moron has decided that a young man with an intellectual disability, who has difficulties with everyday life, can pay for his transport costs out of his own money, obtain receipts and be reimbursed by the NDIS. Give me a break.
Then there was the EEG that cost $285 on Monday. Alex arrived at his appointment with no warning of the cost. He was totally unprepared as a result. This has convinced me that either me or his Dad will have to attend any further medical tests, so we can assure Alex only pays the gap. That amount is about a third of his fortnightly pension.
Plus, we are now treading water, as far as exploring the extent of Alex's Acquired Brain Injury. We wait. To see the neurologist, hopefully by the end of May. To have an appointment at Neurosciences, which is currently a four month delay. Alex needs these appointments as they can provide information for NDIS reviews. I will be ringing Neurosciences tomorrow.
I have applied for Alex's complete medical record to be sent by the Children's Hospital in Melbourne that documents Alex's two hospital stays in 1992 and 1994. The replying email advised me to ring the FOI (Freedom of Information) department if I don't hear anything back after thirty days.
We just received notification of Michael's hospital bill, which, thank God, was paid by our health insurance company. This was for him being present on Karri ward for approximately twenty-seven hours. The Mount is old, disheveled and urgently needs renovation. The amount was $12 000. Go figure.
We have also been notified that our one hour per fortnight of household help has been suspended due to the COVID 19 presence in Western Australia. We waited three months for this service and have had four hours over five weeks of assistance. Just as well I am not completely decrepit.
I am keeping the Black Dog at bay. Just. Last night, I didn't sleep well. "Ventura Highway" by the band America triggered a waterfall of memories. The worst was the fifteen year old me being told I had to find alternate homes for my dog, Snoopy and cat, Coco. Forty-five years after that dreadful time, I push the memory away, as I may descend into my well and never emerge.
My mum, as Shiva, has been very present in my dreams of late. My adored dad has been silent. And I miss my daughter. I used to be so proud of her persona as a fabulous young woman. I don't have a clue how I have failed her. She won't talk to me. I just want her to know that I am not whole until she comes backs into my life again.
I hope tomorrow is a better day.
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