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.

Now 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.

Going down!

Two more blood tests – now weekly - and it’s clear that as the steroid dose goes down, so alas, do my platelets. The pathologist is now marking my thrombocytopenia as ‘moderate’, with the latest reading at 53 (thousand). My haemoglobin count has gone down to 112 and ‘mild anaemia’, and my white cells are also disappearing too, though only just below the safety zone of 4.

So – it’s not a one-off idiopathic event, but as I feared all along, it’s ongoing and will need careful management.

At this stage, my doctor and I are experimenting – within clear clinical guidelines – to see how my body will respond to some Chinese herbs to boost my blood cells and support my spleen.
I now have a mix of 10 powdered herbs – zhi huang qi, bai shao-sheng, dang gui, dang shen, bai zhu-chao, shu di, chuan xiong, rou gui, fu ling and zhi gan cao – to take in hot water twice a day. They initially tasted pretty awful, but I’ve found by diluting them more than the instructions said, they not only taste bearable, but are less likely to give me diarrhoea!

I don’t know what the western or common names for these herbs are, but there is certainly liquorice in the mix! This makes the herbal ‘tea’ almost enjoyable once I worked out a dilution that meant I could mostly only taste the liquorice.

We have also stopped weaning me off the steroids, so I’m sitting on 1mg a day until I see the doctor in a week’s time, when we might have to bump it back up to 2 mg.

Let your food be your medicine

As well as the Chinese herbs, I’m on a strict diet to avoid stressing my body too much. I’ve been eating what I believed to be a healthy diet of green salads every lunchtime, occasional mid-morning or mid-afternoon snacks of raw celery and carrot sticks, as well as apples and cantaloupe pieces. I’ve never been all that fond of raw veggies, and apples are the main fruit I like, but I knew that salads and fresh fruit were healthy, so I persisted.

Well, seems I was wrong, again. At least for now. I’ve been told to only have well cooked vegetables and stewed fruit, as it’s draining energy from my body trying to digest the raw produce. That’s actually what I prefer, and how I used to consume my fruit and veg, until I decided to get really healthy!

The harder part of the diet to follow is the restriction on sugar. Sugar reduces the effectiveness of the immune system, by deactivating the white blood cells, specifically the neutrophils which attack bacteria such as Staphylococcus aureus and Escherichia coli. Since I have a lowered white cell count anyway, it would be foolish to diminish their fighting powers.

So no sugar in coffee, no cakes or biscuits, no honey or marmalade on my toast, and no sugar on my morning porridge. It would actually be a total prohibition, but stewed fruit would taste pretty awful without a tiny amount of sweetness (and I refuse to eat chemical artificial sweeteners)! Porridge tastes surprisingly pleasant without sugar and with just a tiny amount of salt.

Still tired, & now weepy

It’s depressing at times to find how easily I tire, and how little energy reserves I have. A walk to the park with a stroll around the duck pond, and then home again, can still knock me out for a couple of hours afterwards.

My brain feels like it has a hole in it, where the neurons have frayed apart, so I stop suddenly, mid-sentence, waiting for a neuron to bridge the gap and bring the word or thought back.

I have days when I’m shaky and a little weepy – some of which can be blamed on the steroid reduction, and some of it on the generally distressing situation.

On the plus side

On the bright side, my kidneys are almost back to normal – coffee tastes good again, yay!! My cholesterol count is rapidly dropping back to a safe level.

And, although I don’t know what I weigh this week, I can squeeze into more clothes and shoes, so I know the weight and swelling are going down somewhat. Still have the pumpkin face, but I have a sharp new haircut and a vivid purple hair.