Sunday, March 14, 2010

Down and (hopefully) Up Again!

Last week’s blood test was a shocker – my platelet count was down to 33, with the pathologist flagging it as ‘marked thrombocytopenia’. Yikes!!

I feared they were falling from the previous reading of 50, as my gums had started bleeding when I clean my teeth, and I had one possibly unexplained bruise.

So my doctor had a little chat with me – and pushed the box of tissues over as my tears started to flow. This is serious stuff. Whether I like it or not (definitely not), I am seriously ill, and if those platelets don’t start climbing again, I could end up back in hospital.

So, despite my wishing it otherwise, we have increased the steroid dose to 5mg a day. I tried to bargain for 3mg, but was over-ridden. “Better to overshoot and be able to cut back later than to undershoot and have you back in hospital,” she said. I know when to give in gracefully.

Fortunately the Chinese herbs are having positive effects on other aspects of my blood chemistry. While my white blood cells (the neutrophils in particular) are still low, they are back over the danger line. My haemoglobin count has also improved, and is almost out of the anaemia trough.

Because this herbal mixture was giving me unwelcome bloating and some diarrhoea, it’s been tweaked to remove the offending herb. I’ve also found the mix is easier to take if it's made like a cup of tea – ie- diluted twice as much (not halving the dose but adding more hot water).

Food for Thought

My diet has been modified even further, mainly because of my muddle-headedness (or wishful thinking). When my doctor told me to cut out all raw fruit and vegetables and sugar, and eat only warm, cooked food, I thought she also said “and maintain a completely wheat-free diet.” Hence my discovery that eating porridge with salt is much more pleasant than having it laden with golden syrup or brown sugar.

But of course that’s not what she meant, and she said it more clearly this time. “Maintain a completely gluten-free diet.” Umm, that makes life more difficult, especially first thing in the morning. I have trained my body to need breakfast, the most important meal of the day. However, I am always dopey for the first hour or so of the morning, even without the steroid/exhaustion-induced random hedgehog munching my brain, but I can more or less make porridge in my sleep. Plus oatmeal is good for controlling high levels of LDL cholesterol.

random hedgehogNow breakfast will have to be (a) left-overs from the night before – (can I face them?); (b) home-made savoury muffins reheated in the microwave; or (c) toast made from disgustingly bland and crumbly gluten-free bread.

Still Tired and Weepy

It’s been a long hard week, and I have serious decisions to make about my future in terms of how I survive financially when I’m in no state to work more than a few hours a week. Not only does my body feel exhausted, but my brain too – what my doctor calls “brain fag”. This is a problem common to many people faced with a severe illness that becomes chronic, and financial stress can make it harder to relax and recover.

I am sick and tired of being sick and tired! How many chronically ill people must echo my cry?

I know that with my doctor’s help I will a reach a stage where my ITP is managed; when the factors destroying my platelets are balanced by factors that support them without damaging my immune system too much.

I know that when that point is reached I will have much better levels of energy and a more regularly functioning brain – instead of the short bursts of both I have at the moment. And then life will return to something more like normal. But that’s a way down the track, and I have to face the short-term challenges created by a much reduced income.

Always Look on the Bright Side…

This week’s bright side: the higher dose of steroids has blocked out the pain from my arthritic joints and tight neck after only two days. Marvellous!

Also marvellous are my friends, who have rallied round me with empathy and useful good advice (not all good advice is useful). Thank you. You know who you are.

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