Monday, November 15, 2010

It’s good news week!

This month saw me reach my anniversary – 12 months since that strange and frightening day when I was diagnosed with ITP and bundled off to the emergency department of Sydney’s wonderful Royal Prince Alfred Hospital. By coincidence, I had my regular fortnightly check-up booked for the very day. And I was NOT looking forward to my anniversary!

Turns out this was good news day, not the doomsday I’d been dreading.

No, I haven’t suddenly been cured. No, neither my doctor nor the researchers studying ITP are any closer to discovering what causes it. And yes, my pituitary gland is still “screwed up” (to quote my doctor), and likely to stay that way, to a lessening degree, for the foreseeable future. Yes, the steroids are still threatening to tip me over into Type 2 diabetes if I don’t watch my diet very carefully, and they’re thinning my bones and my skin.

BUT, the good things definitely outweigh the bad.

On the bright side

I'm feeling remarkably well and most days have reasonable levels of energy. My platelets are sitting in their usual position around 50, but they're not causing any obvious problems. My blood pressure and haemoglobin level are fine, and the horrible gluggy cholestyramine is doing an excellent job of keeping my cholesterol down and fixing my kidney function, so my kidneys are no longer struggling.

Best of all, because I have been sticking to the no carbs diet, I am no longer insulin resistant. So, as long as I keep on keeping off carbohydrates and sugar, and get enough regular exercise, I should be able to keep the dreaded T2 diabetes at bay.

Regular exercise important for people with chronic illness.

I know regular exercise is important for good health, but the problem for people with chronic illnesses is if you have a bad spell (like my recent gastric flu episode), you very quickly lose condition. It becomes hard to do the things you could do when you were healthy, like walk up hills, climb stairs, carry grocery bags, or wash the floors.

Once again I have my local health service to thank for the opportunities to build up my fitness during this period of comparatively good health. I’ve been accepted into the RPA’s rehab gym, which is mainly for patients with lung and cardiac conditions. I started there this week, doing a little bit of gentle cardio on the treadmill and exercise bike, and some even gentler resistance training for my arms and upper body.

When, in a few months’ time, I get too fit to qualify for this gym, there is another section of the health service that offers continuing gym membership, supervised by physiotherapists, for people with chronic conditions. This service is not free, but is well worth the small monthly fee to continue to maintain and improve physical fitness in managing chronic illnesses.

Reasons to be cheerful

Apart from all the good news from my doctor and the pleasure of doing a little targeted exercise, I have learned to love my diet. Why? Because, not only am I losing lots of weight, but I now have to eat foods that will maintain my weight, and prevent me getting too thin.

Because I must avoid carbohydrates as much as possible, within reason, to defeat the steroid tendency towards insulin resistance, I need to replace the energy I would have got from eating bread, rice, pasta, porridge, cake, etc. And that means eating more fat.

My doctor has virtually ordered me to eat more cream, cheese, butter, bacon, even chocolate, alongside the serves of protein, vegetables and fruit. As she said: “You can have a lot of fun on a no-carb diet!”

It won’t be forever. When I finally get off the steroids, I will be allowed a more ‘normal’ level of carbs in my diet, and once more I’ll have to think very carefully about eating cream, butter, bacon or chocolate. But until then, boy, am I gonna enjoy my no carb regime!

Saturday, October 16, 2010

ITP: a work in progress

It’s over a month since I last updated this blog, and that’s because I’ve had a shocker of a time. Half the month was taken up by being laid low with a nasty gastric virus. Something that would normally take someone four or five days to recover from took me a fortnight. Diarrhoea, vomiting, shivers, and a lot of sleeping. I was not ill enough to go to hospital, but not far off, and certainly ill enough to frighten my friends and family.

An interesting result from the viral infection was the way my platelets responded. I had assumed they would drop even lower than their current level of around 45, and just prayed they wouldn’t drop below 20 – the level at which my doctor and I have agreed I’ll go back to hospital. Instead, they received a huge bounce – to 233, the highest they’ve been in the 11 months since I was diagnosed with ITP.

This anomaly is explained as my immune system being so busy fighting the virus that it left my platelets alone. This shows my spleen is producing thrombocytes in the right numbers, something we hadn’t been sure about before. Now we just have to find a way to stop the immune system munching them all up when it doesn’t have something more threatening to deal with.

Because the platelets are so high, I have been able to drop the steroid dose by 0.5mg and will take off another 0.5mg again next week. Down to 5.5mg prednisone – a little closer to getting off it altogether!

Possible link with Lyme disease

Each time I have a blood test, as well as the usual full blood count, my doctor looks for clues as to what might be causing the ITP. We’ve eliminated H.pylori and gut parasites, and we’re still treating the toxic overload. Now we’re following up on a possibility of an underlying infection of Lyme disease.

For years, medical authorities in Australia have insisted that Lyme disease doesn’t exist here, because none of the 68 species of ticks have been found to carry any of the three species of Borrelia bacteria responsible for Lyme disease. However, my doctor, among a handful of others across the country, claims that patients do have Lyme, and perhaps the spirochaete bacteria is carried by other insects, particularly spiders, mites, and perhaps also leeches.

In common with some of her other suspected Lyme sufferers, I have low levels of a marker called CD57, which the very latest research says is a definite marker for Lyme disease. Because the spirochaete can drill its way into any of the organs of the body, Lyme presents with any of a combination of at least 200 different symptoms, so people with the infection can appear to have different diseases.

At this stage, we're not going to do anything about it, as it's not definite I have the disease, and the specific test is very expensive and not always accurate, but my CD57 count and low folate and Vitamin B12 levels suggest I may have contracted Lyme some time in the past, perhaps when bushwalking in Tasmania over several years, and could still have a low-grade infection of it.

Exploring the complexity of ITP

Each fortnight, when I visit my doctor and study my blood test results with her, I learn something new. This time it was the CD57 count and what that could mean. Other times, we have had genetic test results and I’ve learned a little more about my genetic makeup and how the gene expression – for instance the MTHFR gene preventing me from metabolising folate – can create conditions which cause my immune system to struggle.

I’m fortunate that, as a medical and science journalist, I can not only understand this technical information, but that I also find it intellectually stimulating to learn new facts or theories. I imagine for some ITP sufferers, or sufferers of any serious or chronic illness, this information load could be rather daunting and maybe, depressing.

On the bright side

The cholestyramine ‘glug’ that I’ve been drinking for three weeks (with a break during the gastric episode) is having the desired effect. As well as lowering my cholesterol very satisfyingly, it is pulling out the toxins from the Staph aureus. At last my daily – and often day-long – headaches have stopped! Not only do I feel brighter, but I’m actually itching to get back to writing my short stories.

And another reason to be cheerful: I no longer have the steroid pumpkin face and look almost normal again!

Wednesday, September 8, 2010

Unravelling a possible cause of my ITP

It seems likely that my fluctuating thrombocyte numbers are an indication of an underlying susceptibility to biotoxins (toxins produced by animals, plants or microorganisms). In my case, blood tests and nasal swabs have shown I’m quite heavily infected with two, possibly three strains of Staphylococcus – S. aureus and S. epidermidis, collectively known by the cheerful acronym MARCoNS (Multiply Antibiotic Resistant Coagulase Negative Staph).

Immune evasion proteins (biotoxins) from Staphylococcus have been implicated in chronic illnesses such as Lyme disease and fibromyalgia, by biotoxin researcher Dr Ritchie Shoemaker and could be responsible for ITP in people with genetic susceptibility to them. S. aureus, in particular, is structured to produce toxins that are directed at the two key elements of host immunity: complement and neutrophils, helping it to survive the body’s immune response mechanisms.

Toxic overload!

The latest hypothesis of why I developed adrenal fatigue, and why my platelets keep bouncing up and down, (but never as high as my doctor and I would like), is that I’m suffering from a toxic overload from these Staph infections. As they are known neurotoxins, these toxins directly affect my pituitary gland, leading to the lack of a hormone cascade that results in the adrenal insufficiency or even exhaustion. Add to this my genetic inabilities to metabolise folate and digest gluten-containing foods, and possible susceptibility to the heavy metal, mercury, contained in my old amalgam fillings and you have a recipe for chronic illness that has been gently cooking for most of my life.

Treating toxin overload

Assuming this hypothesis is correct, can we eliminate the toxin overload? My doctor and I have hopes we can, based on Dr Shoemaker’s research. First step is to attempt to eliminate the toxins from my body. This is apparently why I have such terrible bouts of diarrhoea every few weeks!

My fluctuating thrombocyte counts – up to 50, down to 42, down again to 34, and hopefully back up to 50 soon – are like the canary in the coalmine. When my platelet numbers are down, it’s usually the week that I’m having diarrhoea, the huge headaches, and generally feel like s—t, while they bounce up again the following week when I’ve eliminated some toxins, my headache is bearable or hardly there, and I’m feeling pretty good.

We’re going to try to control the diarrhoea and still aim to eliminate the toxins by using anhydrous cholestyramine, commonly prescribed for lowering blood cholesterol levels. The powder is mixed with a glass of water or juice to make a gluggy gelatinous liquid, taken two or three times a day. The cholesterol-lowering effect will certainly be handy, as the prednisone and a high meat, egg and cheese diet have certainly pushed my total cholesterol levels to dangerously high! But the main aim is to bind the Staph toxins with the cholestyramine, which is not absorbed by the digestive system, but passes out in the faeces, together with whatever it has bound.

I shall be on a regime of 8-12 grams a day of this “glug” for two weeks, then more blood tests to see what’s happening. We may well alternate the cholestyramine with doses of high strength antibiotics to attempt to wipe out the Staph infections, and these alternate fortnights of antibiotics and “glug” could last for the next two months.

Diet plays a part, too

My diet has been modified yet again, to maximise the benefits from the new regime. As there’s a possibility that some grains provide a cosy environment in the gut for Staph organisms, I am now having to avoid all grains, even rice, whenever possible. I have been allowed one or two slices of gluten-free bread a week, just to give a base for toasted cheese! I’ve packed away my bread maker for the interim, as there’s no sense it taking up bench space, and no point making a loaf of home-made bread, when a store-bought packet will keep in the freezer for a fortnight.

I’m getting used to eating what I consider a version of the Paleolithic diet, although I’m sure my hunter-gatherer ancestors never enjoyed Greek yoghurt, fresh Parmesan cheese, or olive oil! The only major problem is what to eat for breakfast? Since every meal at present must contain some protein, and there is some doubt whether I should eat legumes, it’s animal protein, and that means cooking! Breakfast is the most important meal of the day, but it also the time of the day when I’m least coordinated and functioning. Cooking porridge was something I could do pretty much in my sleep. Now I have to decide WHAT to cook – eggs, bacon, cheese, fish, left-overs - and HOW to cook it without setting the kitchen or myself on fire!

Always look on the bright side of life…

roast lambThe best thing I’ve discovered about this high meat diet – apart from the pleasure of rediscovering my British cooking roots with stews and casseroles like Lancashire hotpot – is that I can indulge my love of roast lamb with rosemary and garlic. Mmmm!!

Saturday, August 7, 2010

No wonder I’m exhausted!

It’s been over 6 weeks since I last documented my struggle with ITP, or, more optimistically, my experience of life with this autoimmune condition. A lot has been going on over this time, most of it seemingly in slow motion, despite its obvious urgency, because of my lethargy and general sense of exhaustion.

The major event that I’ve struggled through – with the physical support of a few good friends, and the moral and financial support of my family – has been the move from my two bedroom inner-city apartment to a much smaller one-bedroom place in a nearby residential suburb. I’ve exchanged the constant roar of traffic, beeping car alarms and sirens with the sounds of lawn mowers, leaf blowers and planes taking off and landing (under the flightpath of Australia’s busiest airport), as well as raucous calls from wattle birds in the street’s flowering bottlebrush trees.

Thank goodness for all the help from my friends with this move, as I was almost incapable of any action, thanks to the constant, daylong headaches, shakiness, palpitations and just sheer exhaustion. I’m very grateful to them all!

At my last doctor’s appointment before my move, she referred me for a CT scan to check for any physical damage to my pituitary gland. We already knew from blood tests that it wasn’t producing enough of the hormones ADH (which controls kidney function), ACTH (makes the adrenal glands release cortisol) and TSH (thyroid stimulating hormone). So the adrenal and thyroid glands weren’t getting the message to produce their own hormones, and I was getting no energy.

Early this week I had the CT scan, and to everyone’s relief, my pituitary gland, and all the rest of my brain, is physically fine. No visible damage anywhere – no tumours or lesions, nothing. Phew! So, all the lethargy, etc, etc, are yet another score against the prednisone. To be fair, that medication has kept my platelets at 50 for the past three weeks, despite all the stress.

Adrenal Exhaustion

What I do have are the classic symptoms of adrenal exhaustion or adrenal fatigue. (Other names include non-Addison's hypoadrenia, sub-clinical hypoadrenia and hypoadrenalism).

Symptoms of adrenal exhaustion include:
• excessive fatigue and exhaustion
• non-refreshing sleep
• sleep disturbances
• frequent urination, especially at night
• overwhelmed by or unable to cope with stressors
• craving salty and sweet foods
• feeling most energetic in the evening
• low stamina, slow to recover from exercise
• slow to recover from injury, illness or stress
• difficulty concentrating, brain fog
• poor digestion
• low immune function
• excessive sensitivity to cold
• food or environmental allergies

We already knew I had food allergies, thanks to the single gene for coeliac disease I possess. Low immune function is not surprising, since the prednisone is deliberately damping my immune system to prevent it destroying the platelets. However, it’s not much fun that it’s apparently suppressing the pituitary and/or the adrenals and thyroid.

Treating Adrenal Fatigue

Since the adrenal fatigue is complicating matters, slowing down the gradual reduction of the steroid dose my doctor and I have been aiming for, as well as generally making life pretty miserable, we are working to reverse it. First up, my Chinese herb formula has been reworked to include larger doses of adrenal stimulating herbs.

Meanwhile, as we wait for the herbs to kick things along, my doctor is continuing her research into hydrocortisone as a replacement for prednisone. Basically a natural steroid, hydrocortisone has a slightly different action from the corticosteroids, but it can also cause some problems in the changeover period, so we are proceeding cautiously.

Heavy Metals, Pesticides, Plastics Residues, Mould?

Other possible causes or contributing factors for my general lack of oomph could be heavy metal contamination - such as mercury from amalgam fillings in teeth, or eating too much fish and seafood; pesticides; plastics residues (from plastic water bottles, takeaway food containers) or mould toxins.

There is a method of ‘detoxing’ the body to remove these contaminants that is widely used in the veterinary and agriculture industries, and has long been recognised by Traditional Chinese Medicine. It’s a series of naturally-occurring minerals, zeolites, colourfully described as “nature’s sieves”.

The honeycomb-like structure of negatively-charged zeolite particles enables them to attract and electro-chemically bond with toxic minerals and metals such as lead, copper, aluminium, cadmium, nickel and arsenic, which can then be excreted safely from the body. However, like all detox treatments, taking zeolite drops can be a strong therapy that an already exhausted system might find overwhelming, so that’s another path we’ll be treading cautiously.

Other medical applications of zeolites include stimulating the immune system, treating osteoporosis, and the healing of wounds and surgical incisions.

On the Bright Side

BottlebrushThe best thing about the past few weeks (apart from all the support I’ve received), is that my new balcony faces north. All-day sun in the middle of winter! (On the sunny days, of which we’ve had several). I can sit out with a drink and a book, watch the birds in the trees or just lie back in my canvas chair and soak up the rays! Nothing like sunshine for lifting the mood!

Monday, June 28, 2010

Reality Check

One month on and my platelets have been up and down, and my emotional and physical health with them. I had a high – a record 101 three weeks ago, with ensuing confidence, happiness and denial of how serious the condition is. Thank goodness I have my psych to bring me back to some sort of reality once a fortnight!

Because of, course, as soon as we reduced the prednisone by the tiny 0.5mg, the platelets took a dive, and kept on diving for 3 weeks in a row. Down went my strength and resilience, up went the incidence of headaches and shakiness

The platelets have stopped diving, and crept up a whole two points, but at least my doctor and I are starting to recognise my immune system’s pattern. It takes three weeks or so for my cortisol levels to get up to the artificial level of the steroids, so there’s a gap when it’s below what it should be. So the platelets start dropping and keep dropping. Then, it catches up, & they turn around, & rise for 3 weeks until we do the next reduction.

H Pylori and Gut Parasites

During this month I’ve had a series of extra tests, as we cover all the angles. Following last month’s research findings on H pylori, we checked my blood for antibodies. Thankfully we found none, as I really didn’t want to add antibiotics to my pharmaceutical diet. Next, we’ve tested my faeces for signs of gut parasites that might be causing the regular bouts of diarrhoea that afflict me, and reduce my absorption of nutrients from my food. The results aren’t all back, but it seems probable that I’m clear. Which points the finger at food intolerances.

Testing for Food Intolerances

I’m already aware that I’m gluten intolerant, thanks to the presence of one gene for coeliac disease. So, I’ve - reluctantly - adopted a strict gluten-free diet, and started making my own bread – so much better flavoured (and cheaper) than the commercial stuff. Even more reluctantly, I gave up my morning serve of porridge, as even I had to admit that I could no longer digest oats. The 1/8th Scottish blood in me was sorely tried by giving up porridge, and replacing it with the less tasty and certainly less filling millet ‘porridge’.

Now, it seems my Scottish and Welsh heritage (also only 1/8th) might be to blame for some other form of food intolerance. It turns out that people of Celtic background are more prone to food problems than non-Celts. The poor Irish have the highest incidence of food intolerances in the world. So now we’re checking to see if I have the somewhat rude-sounding MTHRFR gene, and if I do, it will be off to see the food intolerance expert at Sydney Uni.

More Depressing Results Of Long-Term Steroid Use

Also during this month of tests, I had a bone mineral density check up, and yes, my bones are thinner by 5%, pushing me ever closer to osteoporosis. It seems the prednisone is drawing calcium from my bones into my blood stream, and, according to my doctor, taking a calcium supplement would simply put more calcium in blood, not back into my bones, until we can majorly reduce, or even stop, the steroids for a while.

Equally bad is the news that I now have metabolic syndrome(‘pre-diabetes’). While I knew the steroids had raised my triglycerides and total cholesterol to quite high levels, my blood pressure is well controlled, and remains perfectly normal, so I’d hoped I would escape the treat of diabetes. Well, no, I’ve developed insulin resistance. So, another change of diet, to minimise it. Now I must drop my carbohydrate load and eat even more protein – ie– at all three meals a day, and up my fat consumption to replace the energy I won't be getting from carbs. Eight months ago I was on a low fat, low protein (100 grams a meal), high carbohydrate diet that suited my lifestyle and kept me around my normal weight of 65 kilograms. Now it’s completely reversed! Thanks, steroids – thanks a bunch!!

Also this month I had a date with my optometrist, who confirmed my eyesight was worse than this time last year – by a large amount, but reassured me that it might not be permanent.

On the Bright Side

It’s winter in Sydney, which means it’s not cold by most people’s definition, the sun shines most days, and I’m enjoying rediscovering meat dishes and relearning how to cook tasty warming meals the slow cook way. And my doctor says I should eat more bacon – in moderation, of course!

Friday, May 21, 2010

More Thoughts on ITP

ITP has a new name, or at least a more efficient attempt at nomenclature. New research on the condition was reported in the March edition of the American journal, Hematologist. The very first news was the name change, according to Professor of Pediatrics at New York Presbyterian Hospital, Weill Cornell Medical College, Dr James Bussel.

“There is now a standard nomenclature. ITP is now immune thrombocytopenia; the “i” is no longer “idiopathic” and “purpura” is no longer part of the name,” he reported.

Well, so now the medicos no longer confess in the condition’s name that they don’t know the cause. It is now officially an auto-immune disease and perhaps they have some better idea as the original cause of the condition.

New Hypotheses on the Pathology of ITP

Dr Bussel reported that understanding the underlying pathology of ITP has changed. The old idea was that thrombocytopenia resulted from antibody-mediated platelet destruction.

Now there are two new concepts. The most developed hypothesis is that the same antibodies that mediate platelet destruction also impair platelet production by damaging the megakaryocytes (the bone marrow cells responsible for the production of thrombocytes) and/or blocking their ability to release proto-platelets.

That's one idea. Here's another: “An exciting but to-be-explored area involves the role of platelet reactive cytotoxic CD8+ cells. These cells clearly exist, but their clinical relevance is not known,” Dr Bussel reported.

Another area of intensive investigation involves T-regulatory cells, which have been reported to be deficient in ITP in several studies, but as yet there are no results.

Eradicating H pylori Infection Lifts Platelet Numbers

Some researchers have suggested than an infection with Helicobacter pylori, the bacteria responsible for causing stomach ulcers, may have a limiting effect on the numbers of platelets in people already suffering from ITP.

An article in the journal Blood in February 2009, reported on a systematic review of all the studies published dealing with H pylori infection in patients with ITP. The researchers wanted to test “whether the eradication of H. pylori infection can increase the platelet count in patients with immune thrombocytopenic purpura”, which they said was “still a controversial issue”.

They looked at 25 studies including 1555 patients, and saw a 42.7 percent increase in patients’ platelet counts from around 30 to 100, and a 53 per cent increase in patients’ doubling of platelets from around 30 after treatment to eradicate H. pylori infection.

The researchers said responses were better in countries with a high background infection of H. pylori, but concluded that “the detection and eradication of H. pylori infection should be considered in the work-up of patients with seemingly typical ITP”.

I’ll certainly be discussing a test for H. pylori with my GP!

On the Way Up, I Think

For the past two or three weeks I’ve been feeling stronger and healthier, which is a great improvement. For three weeks in a row my platelet count sat at 46, so my doctor and I reduced my steroid dose by a whisker – 0.5 mg – to 7mg a day.

The following week the count dropped to 32. I thought this was a disaster, but my doctor was much calmer. All my other blood chemistry was good – haemoglobin back to normal, non-anaemic levels, kidney and liver functions good, and the cytotoxic leucocytes – the white blood cells eating up my platelets like Pac-Man in my bloodstream – were back down to a normal level. She tweaked my Chinese herbs some more and cautioned calm.

This week, the platelets have crept back to 36, and my physical energy and brain power are both at about 70 percent of what they used to be. I feel scarily normal, and will have to work hard at not working hard – that is, pacing myself to take lots of rests, do as much exercise as I can without tiring, and enjoy time with friends. Although I feel capable of working, I must be aware that I’m not 100 percent.

Meditation and Staying in the Now

In the past couple of weeks I’ve started seeing a psychologist to help me with depression – a normal side-effect of a chronic health condition, which is apparently exacerbated by the steroids. After a couple of sessions discussing the meaning of life (the old ‘why me?’ cry, when struck by crisis like diagnosis with a potentially life-threatening illness), we decided that what I needed was help with focus. Staying in the now.

So I have a cd with meditation exercises, and as well as going for a walk every day, I must now sit down quietly for at least 10 minutes and try to still my anxious, chattering mind. I know from reading about meditation that it can help lower blood pressure. I wonder if there’s any study done into the beneficial effects of meditation on platelet counts?

Saturday, April 17, 2010

On the See-Saw Again

Two weeks on and two more blood tests and my platelets are “behaving like the stock exchange” as my doctor put it. Up and down like a yo-yo.

Last time I posted, a fortnight ago, they had crept up to 34 from a scary low of 22. The following week they bounced to a magnificent 55, lifting my spirits almost as high.

Alas, this week’s blood test shows them back down at 35. However, thanks to my doctor’s meticulous tweaking of the Chinese herbs each week in response to my blood chemistry results, everything else in my system is behaving well, with all indicators sitting where they should be.

My neutrophils (white cells) might be a touch high, and busily munching on my platelets. But I’m not panicking, and neither is my doctor. We’ll wait and see what next week’s blood chemistry shows.

Emotional Highs and Lows

Despite that lovely number of 55, this fortnight has been a real emotional see-saw, with lows outnumbering highs two or three to one, and frequent mood swings every day. At times it has seemed like every hour. As soon as I pick myself up, some loss of control over my life – usually resulting from dealing with a health or welfare bureaucrat or real estate agent – sends me tumbling down again.

Some of this depression is directly from the steroids (depression is a known side-effect from long term corticosteroid use), but a lot is from the uncertainty of my financial situation and the frustrations of trying to find somewhere cheaper to live to match my reduced income.

The past two weeks have been laden with delays, frustrations and intense anxieties, and I have to say ‘emotional lability’ (a tendency to burst into tears with little warning) is quite exhausting. And in itself, quite frustrating!

This Week’s Bright Side

The big plus this week is that my energy and brain power are FINALLY coming back, thanks to the wonderful herbs which I’ve been taking religiously, twice a day, and the restricted diet, which I’ve been sticking to. I feel almost normal again and managed to do the 25 minute walk to my doctor’s surgery (it’s gently downhill), tho’ I had to catch a bus home again.

Another plus is that, with the help of my adult children, I’ve found a cheaper place to live in the same neighbourhood, and my friends and family will help me make the move in a couple of weeks.

And my lovely doctor took pity on me over the expense and utter lack of flavour and texture in commercial gluten-free bread and has allowed me to have a small bowl of porridge for breakfast again!

Autumn in the parkIt’s a glorious Indian Summer Autumn here in Sydney. I can walk through my favourite park or just sit there in the sun, and for the first time in a long time, I’m feeling OK!

Monday, April 5, 2010

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!

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.

Sunday, March 7, 2010

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

Feeling blueIt’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.

Saturday, February 20, 2010

More Numbers, More Patience!

Another blood test, another visit to my GP, another set of numbers to crunch and digest. And more patience expected of me – never the world’s most patient person.

The bad news is that my platelets seem to be trending down as the steroid dose is reduced. The last four readings have been 153, 177, 149, and this week’s one, 127. While they’re still in the safe zone, above 100 (thousand), they are at the low end of safe, with the pathologist marking the last two readings as ‘mild thrombocytopenia.’

Alien Attack!

Of course, this then begs the question – why is my immune system intent on destroying my thrombocytes, and is there anything – other than destroying the immune system with corticosteroids – we can do to stop it?

It seems fairly likely that a virus infection, possibly the mild dose of ‘swine flu’ I had in October, triggered the immune system to view my thrombocytes as alien invaders to be destroyed quickly and efficiently. If they really were aliens – say, daleks or cybermen – I’d be very proud of my immune system, fighting them off with no sign of The Doctor anywhere close by.

But, wait – these aren’t aliens – these are necessary members of my corporeal community with important roles of their own! Apart from causing my blood to clot at any injury, my platelets also help wounds to heal. I just found out that their name, ‘thrombocytes’, literally means ‘clotting cells’ (Greek: thrombus – clot, cytos – cell).

What we need to do now is to find some way of getting my immune system to recognise that my platelets are on the same side of the war against the real, biological aliens – that they’re friends, not foes.

And in the meantime, keep the numbers up as the steroid dose goes down.

Unhappy Kidneys

I’m still peeing large amounts, but no longer vast cataracts of liquid, thank goodness. So my kidneys are gradually improving, but that funny, almost metallic, taste in my mouth that makes me want to suck peppermints all the time, is apparently a sign of the kidneys being damaged. Probably by the prednisone, but possibly by other lifestyle matters as well, such as my chronic irritable bowel.

The worst part of this, apart from a natural concern about the state of my kidneys, is that the taste in my mouth is affecting my enjoyment of coffee. Suddenly coffee doesn’t taste so good any more!

If my kidneys are still not happy next time I see the doctor, she will prescribe some herbs (Chinese or European, I’m not sure which) to cheer them up. These will probably taste foul, but I won’t know, until my kidneys are functioning properly and I no longer have that strange taste in my mouth.

Still on the Wagon

Apart from celebratory drinks with friends over Christmas, I haven’t touched any alcohol for three months. Not even on my recent birthday! I’m not a heavy drinker now I’m not in my 20s, but I do enjoy a glass or two or red wine with a meal, and/or the occasional whisky. In the summer, I like a Cinzano Rosso or Sec over ice.

Now, remaining teetotal, while not a huge struggle, is an ongoing disappointment. A gentle pleasure denied me by this stupid disease. So I’d hoped that the steroid dose was low enough at 1.5mg that I could be allowed a glass of red wine with my evening meal. I was even prepared to barter my daily mug of coffee for an evening tipple.

Nope! No way! In fact, the barter had to go the other way. My doctor was prepared to allow me my daily coffee (though she’d rather I didn’t) in return for a promise to stay off the demon drink. I was tempted to quote St Paul’s advice to her: “take a little wine for thy stomach’s sake” , but I don’t think she’d have been amused. (Besides, modern translations probably say 'non-alcoholic wine', and what’s the point of that?)

It seems my poor body is not strong enough yet for strong liquor – not even an environmentally friendly and very smooth blend of South Australian shiraz and merlot.

Weaning Ever So Slowly

What with the kidneys, and the headaches I've had off and on, and the lethargy/feeling like a lump of lead, or the days when I can't stay awake, it seems I'm still cutting down the steroids a touch too fast. So instead of going from 1.5mg to 1mg this week, I have to take a smaller jump - more of a hop, really - to 1.25mg. I'll need a pill cutter for this, as the 1mg tablets are hard enough to break in half, let alone quarters.

This extra step adds at least another week to the 'getting off the bloody steroids' timetable. Maybe by the middle of March?

Now to the good news

Yes, there is good news, despite all my whingeing. While my weight remains the same, there are more days when I can get into my baggy green pants, and even occasionally squeeze into the stretch jeans (hiding my muffin top under a loose shirt or smock). Various swollen bits are going down – my bras almost fit, my face is a bit less pumpkin-like, and yesterday’s great achievement: I could get my feet into a real pair of shoes again!

The hot, steamy, tropical weather has ended too, with the start of early autumn. The humidity has gone, there is less bite in the sun, but it’s still gorgeous weather. Though this has no connection with weaning off the steroids, or being good about staying off the booze, it has certainly improved my psychological and physical ability to deal with both of those!

Friday, February 5, 2010

Doing the Numbers

Well, the numbers in my blood tests go up and down like my belly - which a couple of weeks ago shrank so I could fit into my baggy green summer pants, and this week swelled again, so I looked 6 months pregnant in anything that would actually go on and was decent enough to wear in public.

My platelet count is yo-yoing with every blood test I have – 202, 153, 177, 149. My doctor says not to worry at this stage – I’m going down through the steroid dose so fast that it’s not surprising that the thrombocytes are bouncing. The crunch will be when we get me right of the prednisone, then we’ll see which way the platelets are heading.

And my weight – is that going up or down? It’s certainly up since I was last weighed, coincidentally on the day I was later rushed to hospital. Then it was 67kg (148lbs, 10.5 stone). Now it’s 73kg (161lbs, 11.5 stone). In three months I’ve put on a stone in the “old language”, or 6 kilos. Six kilos!! It feels more like 10! But as this is the first time I’ve been weighed since starting the steroids in November, I don’t know if my weight is increasing or decreasing. Clothes are no longer a reliable guide to body size!

Other Good Numbers

I'm pleased to see that my sodium levels are back to normal (no more salt tablets), as are my calcium, magnesium and sodium. My kidneys are still struggling, but are better than they were.

While my total cholesterol levels are really quite high, they’re coming down as the steroids go down, and my haemoglobin, which had dropped just below the normal range, is back up where it should be.

Slow Down, You Move Too Fast

For the past few weeks I’ve had relatively easy run dropping the steroid dose by 1mg every few days. But as I’ve got closer to the magic number of 1mg a day, the trip has been increasingly bumpy, and my doctor warns me to slow down, I’m going much too fast as I try to wean my body off it’s dependence on corticosteroids.

This week, as I’ve come down from 4mg to 3mg to 2mg, the bad reactions in the morning have returned, and I’ve lost two whole days to palpitations, shakiness, lethargy and headaches. (The hot and very sticky humid weather we’re having hasn’t helped either!).

Now I must go back to driving slowly and cautiously, as on a narrow, winding, mountain road, with my fog lights on, and a possible milk tanker or log truck up ahead. No more nipping along with the top open, whistling cheerily as I zip around the downhill curves.

In other words, I must stay on this 2mg dose for a week, before cutting back by half a milligram to 1.5mg for another week, before even thinking about getting down to 1mg.

Vitamin D Revisited

Last time I saw my doctor, she told me to stop taking any Vitamin D supplements, and attempted to explain to me about the different forms of Vitamin D.

I have reread the article on Vitamin D she recommended, and it’s moderately scary stuff.

For starters, it seems that ‘Vitamin’ D is not a vitamin at all. According to the molecular biologists at the Institute of Biomedical Research in Birmingham, England, it’s “a potent immunomodulatory seco-steroid” - a steroid-like molecule which is able to control the activity of the immune system. When taken in high doses, it is an immunosuppressor – as if I needed another one!

There are other interesting facts highlighted in the article, with links to clinical studies and peer-reviewed papers. For instance, that normally healthy people and even chronically ill people are not deficient in ‘Vitamin’ D, and don’t need high doses of this seco-steroid.

And, importantly, that ‘Vitamin D’ does not stop osteoporosis.

This is research I’ll need to keep an eye on, as there is so much emphasis currently on getting enough ‘Vitamin’ D for its suggested health benefits, especially for people over 60.

Meanwhile, I will take my foot off the steroid reducing accelerator and practice patience instead.

Monday, January 25, 2010

Ups and Downs on the Steroid Rollercoaster

Today I had my second session with my new ‘wonder worker’ GP. I reported how I’m dropping the steroid dose (1 mg every 2 days) and how much better I've been feeling. In particular, that my brain is a lot clearer, and my energy levels higher, though neither of them as good as they were before November 11 (ITP day).

While she was delighted with my progress, the good dr brought me back down to earth, warning me that the last few milligrams - in particular the last milligram - of prednisone is the hardest to wean the body off, and it might take some days of taking halves or even quarters of that last 1 mg tablet.

As she pointed out, when I did the steep drop from 20 mg to 15mg, I was reducing the dose by 25%. Last week I went from 13 mg to 12 mg (7%), and this week from 8mg to 7mg (12.5%). Next week I’ll be going down to 4mg, with the drop from 5 to 4 being a whole 20%.

But when it comes down from 2 mg to 1mg, that’s a BIG drop of 50%. She warned me I might have some really nasty experiences dealing with such a proportionately steep drop - even the possibility of depression again – as well as palpitations etc.

But hey, that’s two weeks, and two blood tests away!

Oh, What a Tangled Web…

No, I haven’t been deceitful – I’m referring to the immensely complex and convoluted physiological web that is the human body, especially when you add in various pharmaceuticals.

One of the unexpected side-effects of all this intervention has been the sudden oedema (swelling) of my legs. In particular the left leg, which swells up gradually during the day & never fully subsides during sleep. It becomes very tight and shiny and quite hot, & I cannot put the fat foot in any shoes other than my loose plastic clogs, or my very old gym shoes, just barely laced together.

This is partly a response to my too enthusiastic adoption of salt tablets to correct my sodium imbalance (even though I’m taking less than the minimum three the label suggest), combined with my own (unadvised) halving of my daily dose of Karvea, to reduce the enormous volume of pee each night. Wrong, wrong, wrong!! Apparently I need to keep peeing vast cataracts every night, to drain out all the fluid I’m storing in my face and now my legs.

Joint Pains, but Not from the Steroids

As part of this week’s general discomfort, along with the return of nightly leg cramps (though not as severe as before), I’ve also been experiencing pain in all my arthritic joints. And in my neck, shoulders and ribs. For these, I can blame the steroids, but only indirectly.

The problem is I’m cattywampus, and my joints are all complaining. ‘Cattywumpus’ is a lovely word I’ve learned from my daughter’s American friends. It means askew, off beam, ain't quite right, what I’d call ‘skew whiff’.

Normally I’d be having a massage about every 6 weeks, and seeing my osteopath every 3 or 4 months for an adjustment, as well as doing all my appropriate exercises. But a lack of income, combined with one of the few positives of steroid treatment – masking of joint pain – meant I’d ignored my skeletal needs. Now the steroid dose has dropped low enough for my complaining joints to get my attention.

Did Someone Mention Vitamin D?

When my other GP told me some weeks ago that I was low in Vitamin D, I did the right thing. I gave away my sunscreen to a friend whose pale skin burns at the mere thought of sunshine, and bought a calcium supplement fortified with Vitamin D.

Of course, once I started on the magnesium supplement to counteract the leg cramps, I had to stop the calcium, as the two chemicals compete with one another for the same sites on the cell membranes, so it’s best not to take them at the same time. Being concerned about my thin bones, I questioned Dr ND today about calcium and Vitamin D and how I was to protect myself from osteoporosis.

There followed a convoluted biochemical lecture on the types of Vitamin D in the body – stored and activated – which I confess I didn’t follow completely, and will need to read the literature on, before I get my head around it, let alone explain it to anyone else.

As far as I can gather, I have too much of the activated type, and I don’t need to be trying to store any more of the other one (from supplements and/or sunshine). While the thin bones are a concern, it seem we have to put then to one side until we have completed the arduous task of weaning me off the prednisone, and getting the steroid residue out of my system.

Looking On The Bright Side

Yes, there are bright spots from today’s visit. I’m doing better than expected in dropping the dose down without too many problems. I do have more energy and brain power, even if my strength and endurance are still way below what I’d like.

And best of all, despite the swollen legs and feet, and still swollen face, my belly fat is going down!! Today I was able to squeeze into my wide-legged khaki-green linen pants – the same pants that last summer were too loose and needed a belt to stay up, and only a month ago would not go near me.

I may not be able to get my shoes on, but I can wear my favourite summer pants again. Yay!

Friday, January 15, 2010

So Long and Thanks for All the Fish

Today I farewelled my haematologist – he’s off overseas for several weeks – but I also farewelled him from managing my condition. First up, I have another beautiful number – 202,000, so I am well and truly back in the land of people with a full complement of thrombocytes in their blood.

Secondly, I’ve finally met the doctor who respects my experience of the way my body works and responds to different chemical stimuli, and who is going to work WITH me, to help me manage my condition in the way that is best for me.

This is the wonderful Dr N D, the GP I’ve waited so long to meet, who treats people with ITP with Traditional Chinese Medicine (TCM) as well as up to the minute western medicine.

The Patient Knows Their Own Body Best

Dr ND hasn’t given me Chinese herbs, as they wouldn't work now I no longer have ITP symptoms of severe bruising and risk of internal bleeding. Instead, she’s helping to wean me off the steroids, much more gently than the haematologist. Apparently my body is just not adjusting to the huge drops on the dose every two weeks - 10 mg at a time - and it takes most of the fortnight to settle to that level, then we do the big drop again. That's why I have such a severe response most days - so severe that some days all I can do is lie on the couch. My poor body is pharmaceutically over-stressed!

So now I’m cutting back much more gradually, by 1mg a fortnight, a week or every few days, depending how I respond. The responsibility is mine to decide when to make the next cut, as “the patient knows their own body best”. I’m keeping a diary of what dose I take and what reaction I have to it, both positive and negative.

At the same time, we’ve split the dose in half, to be taken twice a day instead of one big one. Just that move alone, four days ago, has greatly lessened the morning shakiness and palpitations, replaced now by an overwhelming sleepiness. I still lose up to an hour and a half each morning after my dose, but so much more enjoyably snoozing!

Today I’m down from 15mg to 13mg. I will stay on that for a couple more days, and aim to get down to 10mg in about a week.

The Complex Biochemical Equation of My Body

“What a piece of work is man,” Shakespeare remarked. Had he been a woman over 55, he might have added: ”and what an even greater piece of work is a post-menopausal woman!”

Dr ND took a number of blood samples for tests, not just for a platelet count. She says the thrombocyte count is just one factor, and it's a blunt instrument, so she's looking at what my adrenal gland is doing, what my blood sugar and insulin levels are, my kidney function and levels of chemicals like magnesium, calcium and sodium. We will repeat all these tests once a fortnight, or more frequently if necessary.

Twenty-four hours later she rang me with results. On the plus side, my thrombocyte count was over 150,000 and my blood sugar levels and insulin were normal (so no risk of Type2 diabetes). Cortisol, (the hormone produced by the adrenal gland, which can stop being produced when taking oral steroids) was also OK.

On the minus side, my kidney function was not looking good, my calcium levels were too high, and my blood sodium levels were way, way low. The good doctor said such low levels make the brain fuzzy, sluggish and confused, which would have amplified the nasty response to the steroids. In the worst cases, especially in frail elderly people, seizures may occur, possible coma and even death.

Why was my blood sodium so low? I asked. Well, the medication I’ve been taking for the past 18 months to manage my hypertension, Karvea (irbesartan), leaches sodium from the blood, and in fact, there is a warning about it being contraindicated in cases of sodium depletion.

Like many people on antihypertensive medication, or just being cautious about high blood pressure and possible heart disease, I've cut back severely on salt and salty foods for several years, and even feel a little guilty when enjoying salty treats like olives and hot Hungarian salami. And probably that was a wise precaution before I was prescribed irbesartan.

Goodbye Haematologist, Hello Real Personal Responsibility

When I saw my specialist this morning, I very tactfully discussed these changes with him. He was delightfully patronising, (if you like being patronised by what my more outspokenly feminist friends call a “male chauvinist pig”.) He knows my GP to be painstaking and competent, and after all, “managing steroids is not rocket science”.

When I said that splitting the dose had made such a difference to the intensity of my morning reaction, and that the magnesium supplement had calmed my painful leg cramps – both things I’d complained to him about in previous consultations – his response again was the “rocket science” comment. Yet not once had he suggested any means to me to alleviate what he’d always dismissed as “common side effects”.

So I thanked him very prettily, and he congratulated me on my new number – 202,00 – which he assured me meant that my ITP episode was over (!), and we parted with relief on both sides.

Taking Responsibility isn’t Easy, but it’s the Only Way

I have been so lucky, firstly with a good healthcare system that I can get medical and hospital care paid for out of my taxes, and secondly to find good primary care practitioners (GPs), like the one I’ve had for a few years, and my new ‘angel’, Dr ND.

Nevertheless, it's been up to me to research my condition and try to understand every aspect of it, and then to argue with the relevant doctor until I can take full responsibility for my actions and my health (as far as it’s amenable to my will).

And that, I think is the case for all of us, whatever the health condition we have to deal with. It’s your body – own it!

Friday, January 8, 2010

A Life Lesson Finds Me Grumpy

This week I’ve been faced with learning another of life’s lessons, and for all I ‘m trying to be positive, it’s left me grumpy and feeling sorry for myself.

A few days ago, I went to my local hairdresser to get my hair cut and to chat with the pretty girl who does it about options for colour, as the reddish purple I‘ve been using lately fades too fast in Australia’s strong sunshine. It also doesn’t suit my red, swollen pumpkin face.

This girl, Anna, has long blonde hair, and looks like an archetypal Disney cartoon heroine.

When I first met her, four months ago, she was lively and animated. This day, she looked tired. Knowing that she had, some time in the recent past, also been on steroids, I was complaining about how I hated them - how fat I am, how I barely have anything that fits me, how I hate my puffed up face and the lack of sleep, and the loss of energy, etc, etc.

Then she told me she was living with something like chronic fatigue, and that she frequently has days when an hour after getting up, she needs to lie down again, because she's exhausted. She had been working full-time at the hairdresser's, but has had to cut her hours back, as she's not strong enough, and has been advised to try to rest.

"I’m only 25, I don't want to be resting!", she said. Poor kid! I felt so selfish & egotistical! I vowed to stop complaining right there and then.

One Good Day, Two Bad Ones

But it’s not that simple, and I figure I can complain here, even if I keep my mouth shut in public. I know I’m not as sick as Anna, but there are far too many days when these blasted steroids make me feel as if I am! If I have one good day, in which I feel almost normal (as long as I don’t catch sight of my face in the mirror), it’s almost inevitable that the next, and often the one after that, will be spent lying on the couch, barely able to move or think.

For example, yesterday morning I went for a gentle walk before breakfast. I went to the big local park, usually an easy 10 minute walk for me. I didn’t push myself, but enjoyed stretching my legs and breathing the fresh air, and got to the duck pond in 20 minutes.

Then I sat for about 20 minutes, watching the birds, looking at reflections in the water, loving the trees around me, enjoying the sight of people walking their dogs. I walked slowly home, sitting at a bus stop halfway along for another rest break. I was home about an hour after I’d left and I was feeling good!

After breakfast, I took my steroid dose, and promptly lost one and a half hours to the shakes, palpitations and energy drop. I lay on the couch, wrapped in a sweater, and dozed.

About mid-morning, I felt it lift a bit, and went into my office to attempt some freelance writing. I managed about two hours, slowly, of writing and reading research, but by lunchtime knew I had to give up. The afternoon was spent on the couch - and there was no cricket to watch, the only daytime tv I like! My eyes were so blurry I couldn’t read, but I managed a little knitting, in between shivering and dozing.

Today is a little better. My brain is working at half-speed, so I can just manage this blog, but my energy is barely above couch level. And my positive attitude is having difficulty maintaining altitude.

I know I will get better. I know I will be off the steroids in another six weeks or so. If I’m lucky, the ITP will truly be idiopathic and never return, though it’s far more likely it will recur on occasion, necessitating some use of the steroids in the future.

Sadly, I also know from what Anna told me, that it can take at least two years after stopping before the steroid effects wear off completely and I resume my normal face and body. If ever!

Always Look on the Bright Side of Life

Ever since 'The Life of Brian', I’ve tried to live by that motto, as I’ve faced many of the life crises other women my generation experience – marriage breakdown, retrenchment, severely reduced income, some truly nasty things in my past needing to be acknowledged and dealt with.

Why should this health problem be any different? So, I’m going to sing along with Brian!

Monday, January 4, 2010

More Pains and Pills, but Progress, too

It’s unbelievable what a difference a good night’s sleep can make! Last night I had an almost normal five and half hours, in two goes – the first a blissful four hours long! I don’t remember being this sleep deprived since my children were little and I had a sick baby and an active toddler to cope with. At that time, I also had a loving husband who did the yucky bits like getting up and changing the pooey nappies, and heating bottles. But I still walked around during the day as if I was under water!

No pooey nappies now, 30-odd years later, thank goodness, but the latest set of steroid side-effects has wrecked my ability to sleep more than two hours at a time, if I’m lucky. For the latest - in what seems like a time bomb of steroid effects - is nightly attacks of extremely painful leg cramps. On a really bad night they wake me every hour, exactly 60 minutes later than the previous bout, and can only be calmed, or at least reduced to the point where I hope I can fall asleep, by walking around and rubbing in a muscle relaxing blend of essential oils called Be Relieved. This has always worked wonders on my ongoing musculo-skeletal problems, but I think only gives me psychological support in dealing with the vicious cramping in my calves and feet.

Somehow, last night, I managed to circumvent the cramps by dosing myself at bedtime with codeine-enhanced painkillers swallowed with warm milk and honey and a biscuit. Praise be – I had four hours zonked out, before a cramps-lite woke me at 3.30!

Cramps a Sign of Magnesium Deficiency

It turns out, muscle cramping and muscle weakness are signs of a magnesium deficiency, which we can lay indirectly at the feet of the prednisone treatment.

Prednisone inhibits the uptake of calcium, as we already know, and I’m taking extra daily calcium. But it also apparently depletes the body’s supplies of magnesium, and inhibits the uptake of more. Magnesium is involved in a complex dance with calcium to relay nerve messages and contract muscles. Hence the cramping. A deficiency of magnesium can also cause or exacerbate palpitations, which also bother me during the night.

So now I have a bottle of magnesium supplement, complete with extra Vitamin D3, vitamin B6 and Vitamin C, to add to the handful of pills I take with food morning and evening. But if it works – if it knocks off the cramping and the palpitations, and gives me a good night’s sleep again - I will truly be a happy camper!

Progress with Pills

The regional city I grew up in had as its municipal motto “Progress with Prudence”. As a schoolgirl, this always made me giggle, since “Prudence” was the glamorous blonde head girl of the private school I attended. However, I understand the City Fathers meant that they were forward looking but not irresponsible.

Well, as a matter of personal philosophy, I loathe being reliant on pills and pharmaceutical products for my health and wellbeing. But, I am being prudential, cautious – maybe even open-minded, and embracing the necessity of them right now.

Today I was able to cut my steroid dose back to 15mg for the next 12 days until I see my specialist again. Meanwhile, if the magnesium takes effect, and the reduced prednisone means lessened side-effects, I will keep taking the little white pills, the big white pills and the big pink pills. Another good night’s sleep like last night’s, and I’ll start to believe I’m human again!