A Respite Phase?

For the past 6 weeks or so I have been feeling pretty good, despite being “a magnet for colds and flu”, according to my GP, because some of my immune system markers, the immunoglobulin subclasses Ig1 and Ig2 are still very low. Ig3 and Ig4 are somewhat low, but within the range, so they’re not a worry.

My cortisol levels are still alarmingly low at almost a quarter of the expected baseline level. The adrenal glands and pituitary gland are still not functioning properly. So you would expect me to be feeling slow in the mornings, and with the low immune system, liable to catch whatever is going around in the way of germs.

Not so! I’ve been remarkably well. So well that when I visited friends and family in Melbourne and Tasmania, I sensed a little disappointment that I didn’t look like I was at death’s door, as some had expected. I assured them that I HAD been at death’s door, especially when I’d had to rush to the emergency room during February’s heatwave, when a combination of heat exhaustion and crashing nausea from migraines made me very sick indeed.

But I’ve been delighted to be feeling so bright and energetic, as it meant I could finally take my brief interstate holiday, and enjoy catching up with my son and daughter-outlaw and my three gorgeous grand-daughters, other relatives and many friends, as well as the perfect autumn weather. I always feel much better when the sun is shining! I came back exhausted from so much pleasurable activity, and was surprised to find my platelets had doubled from 45 to 93, quite high for me. On the strength of that bounce, and my continuing good health, we reduced my steroids by .5mg to 3.5mg daily.

Cordyceps works – at least for me

I’ve been taking the Chinese fungal preparation, cordyceps sinensis at the rate of two 500mg tablets each morning, for the past four months. It’s been clear for at least two months that this is assisting me to maintain good energy levels despite my poorly functioning adrenals and pituitary gland, and it may also be improving my immune function.

Whether I will need to continue taking cordyceps after I’m finally weaned off the prednisone is not yet clear, but I’m happy to keep taking it, as I’ve had no adverse reactions to it, and some definitely positive effects. Without it, I think I would be far less chirpy than I am!

Weaning the prednisone – what’s ahead?

Not surprisingly, I’ve been really enjoying this sense of well-being, and of feeling that I’m almost ‘back to normal’. But what is ‘normal’ for me in this new situation of learning to live with chronic illness? Both my GP and my psychologist have warned me I will likely have setbacks – that I won’t always feel as good as I do now.

The psych gave me some very good advice, which I’m applying by writing this blog. He suggested I write a note to myself – from my well self to my unwell self. It’s to be read when I hit a setback, reminding myself that I’ve been ill before – several times during this past 18 months – and that I’ve got better, and even bounced back. That no phase is permanent – nothing in life is permanent, but just as there will be bad times with my health, so there will be good times again. The whole series of posts in this irregular blog will show me that!

Even now, in dropping the pred down to 3.5mg, I’ve had a little bit of an adverse reaction. Not immediately, but after a couple of days. I started to feel a touch shaky in the mornings, slower to get started, and at night, brief palpitations on going to bed. For two days in a row I had very little energy, and spent the afternoon of one day, and the whole of the next reading and knitting. Thank goodness for beautiful autumn sunshine – I was able to ‘convalesce’ in a comfy chair on my balcony soaking up the rays, surrounded by my plants.

On the bright side

The autumn sunshine finally induced my nasturtiums to bloom, so there were bright yellow and orange flowers to greet me when I came back from my holiday. All the herbs on my balcony are doing well – I can pick rocket, chives and parsley every day for a bit of fresh green life, the oregano and everlasting basil ares still going strong and the rosemary bush has started to show tiny mauve flowers. What a joy even a tiny garden can be!

A Hard Couple of Weeks

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!