This past two weeks or so has been pretty miserable, with my platelet count a week ago down to the frightening figure of 22. My ITP doctor & I had agreed that if it went below 20, she would put me in hospital. So we upped the steroids to 7.5mg and she tweaked the Chinese herbs some more and ordered me to REST.
Just resting would have been lovely, but I also had to spend time visiting the State public housing authority to apply for subsidised housing, an appointment with a bureaucrat from the Federal government welfare agency to be assessed for the disability support pension, and a humiliating session with a church-based community welfare group to ask for short term accommodation or financial assistance. The elderly man interviewing me told me they didn’t provide housing, read me a lecture on being in an untenable position, & gave me a $50 plastic card for grocery money.
Being Pampered is Great!
For the last few days before the Easter break I had the joy of being pampered by my son, who came up from Melbourne specially to look after me. As it was school holidays, he had a few days he could spare while his partner & daughters visited her family, also interstate. J helped me buy groceries, cooked me healthy meals (I’m supposed to eat lots of meat), washed up, cleaned, made me cups of tea & pots of coffee, and sat and talked. It was wonderful! Three whole days of being pampered! He also helped me look at cheap private rental places online, although none were open for inspection while he was here.
Up and Down Again
J left the morning I had my latest blood test, and rang me the next day to hear the results. Thank goodness, the platelets had crept back up to 34. But my cortisol levels (from the adrenal gland) are horribly low – partly from ongoing stress and partly blocked by the steroids. This accounts for the dreadful slowness from early in the morning through almost to lunchtime, and the inability at times to think clearly, if at all!
My urate levels – by-products of breaking down the steroids – are very high, and the pathologist has warned they could be associated with alcoholism or metabolic syndrome. Since I’ve had no alcohol since Christmas, metabolic syndrome is the one to be a little concerned about. But not yet, as my marvellous doctor is on top of it all, and has tweaked my herbs yet again, both to support the adrenal gland and to help the body cope better with the steroid by-products.
Feeling Down
Not surprisingly, after my son left, and with the warning from my doctor that getting this condition out of the acute phase and into a more stable stage where the medications and herbs and diet keep the platelets at an acceptable level, could take another six months, I’ve been feeling pretty low - depressed and frustrated. I am supposedly eligible via one of the welfare levels (Federal, State, community) for some inexpensive counselling, but have not been told who’s paying and how I access it.
Adding to my depression is the attempt to find affordable private rental while I wait for public housing, a wait that could be up to a year or more. It’s hard to go house hunting when you have little energy and depend on friends to take you. Real estate agents aren’t particularly helpful towards renters, especially at the cheap end of the market, as they know there are far more would-be tenants than there are available properties. That said, my friends have all been marvellous, & it certainly helps to have another person when looking at a possible home.
On the Bright Side
On the day before Good Friday, I was notified that I’d been approved for the disability pension, and that payment would start in another two weeks. It was remarkably quick, as I’d been informed I wouldn’t know either way until May. This pension brings a little more money per week than the unemployment benefits I’ve been on, & there maybe other benefits, as yet unclear. At least I no longer keep having to prove to the welfare agency that I’m not fit to be working, so fewer forms to fill out & no more queuing up to lodge them in person.
The other bright point is that the strict gluten-free and sugar-free diet is working to reduce my weight. I’ve dropped another kilo down to 69. Only 5 more and I’ll be back to my normal weight!
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