Up and down – life on a see-saw

Well, it’s been 2 months since I last reported in this blog, and I have to say it’s been a very confusing (and somewhat depressing) period.

My last post was full of energy and optimism, even though I admitted I knew I wasn’t cured. Since then I’ve been on a see-saw, with my platelets up one week and down the next. After the magnificent 233 I had following the horrendous gastric flu back in October, they settled back down to a normal (for me) 50-60 range for a few weeks.

But once we dropped the steroids down to the borderline 5mg/day, early in December, the platelets grew skittish. Down to 25 just before Christmas, so that was Christmas and New Year wiped out, back up to 46, and then just as I was about to go interstate for a week to see my son and family in Melbourne, and my sister and friends in Tasmania, they plunged to 31. So that was the end of that little holiday!

Because of course, it isn’t just that my platelets are low. Because my pituitary is still not working properly, my cortisol readings are also way down at 50 (when they should be at 150+). Low cortisol means low energy (some days none at all), and little or no brain power. It’s back to the couch, and there isn’t even any Test cricket to watch!

As well as the platelets and the cortisol deficits, all the B cells and T cells and other components of my immune system are way out of whack too, so I have little resistance to any nasty viruses or bacteria floating around. Both Sydney and Melbourne are suffering from epidemics of whooping cough, and having had it as a child many years ago doesn’t confer the immunity I thought it would. Whooping cough immunity only lasts about 10 years, and teenagers are now given booster shots, and adults when they start families. Some medical practitioners, including my doctor, also re-immunise grandparents. Of course, I’m not well enough to risk having a ‘grandma booster shot’, so I just have to be careful – especially in doctors’ waiting rooms where there are small children!

Cordyceps – will it make a difference?

I’m very fortunate that my doctor is both a western medicine-trained GP and a fully trained Traditional Chinese Medicine (TCM) practitioner. In the past, she has prescribed mixtures of Chinese herbs to help my body cope with the effects on various organs and systems of high levels of prednisolone. Once we got down to 6mg/day, we were able to discontinue these herbs, and just supplement with daily folinic acid and vitamin B12.

However, since my adrenal glands are not recovering as fast as they should to the lower steroid dose, as shown by my poor cortisol levels, we are trying the Chinese fungal treatment cordyceps along side my other supplements. Although there are no large scale, double blind studies to show whether cordyceps works to assist the adrenals, there have been small scale trials that showed good results, and the fungus has a long association in TCM with improved chi (energy). Like all herbal treatments, it will take some time to show any results, but we should have some idea after I complete a month on it.

On the bright side

On the days when I have energy and brain power, I have the urge to write. I’ve started working on a couple of new short stories, as well as researching and writing little bits of my next novel/short story collection. My doctor is encouraging me in this effort, as opposed to looking for more income-earning writing which I might not be able to complete, as my energy drops off. When I’m working creatively, the emotional energy I get feeds back into my body, with physiological and psychological benefits, where chasing income opportunities depresses me.

The other good thing about this whole period of readjustment is trying out new recipes for my very low carb diet. On the days that I have any mental and physical energy, it’s fun looking up new ways to cook otherwise bland and boring tofu, or ways to create low-carb AND gluten-free desserts and cookies.

A Beautiful Number

When former Australian Federal Labor Treasurer, Paul Keating was what he described as “the Placido Domingo of Australian politics”, he would often speak lyrically of “beautiful numbers”. Yesterday, I had a beautiful number of my own.

I’d had an absolutely crap 10 days, with each successive day seeming worse. I’d developed a heavy cold the day after taking part in the Walk Against Warming, and was already aware from my previous visit with my haematologist that my thrombocytes were disappearing again. On December 11 they had dropped to 119,000, and the professor warned that if they kept dropping, he would have to put me back into hospital to administer more IV immunoglobulin, and probably do a bone marrow test to see what was going on.

So by yesterday, December 23, I was feeling so wretched – absolutely no energy most days and no brain power either – that I was convinced they must have dropped to 60,000 or less. I even put myself under “house arrest” for the last 3 days, (apart from friends taking me downstairs to the coffee shop in my apartment building), terrified that if I went out on the street during the Christmas shopping frenzy I’d get knocked over and start bleeding internally.

Not only had I convinced myself, but also my family and close friends, all of whom were very worried for me.

When I saw the professor after my blood test, and he asked how I was feeling, I replied, gloomily, “I’ve felt better.”

“No.” he replied, “You’ve felt a lot worse. Your platelets are up to 193,000. You’re almost back to normal.”

So I poured out my sad story as he sat there, grinning broadly. He had the decency to acknowledge that I had indeed suffered, and explained that most of the misery would have been from the cold, exacerbated by the still-annoying steroid side-effects – most especially the lack of sleep.

The Good Things About Taking Steroids

So, in acknowledgement of the very real benefits I’ve received from my daily prednisolone this past couple of weeks, I’ve decided to list the positives:

• My thrombocyte count is almost back to normal
• I don’t have to spend Christmas in hospital, eating incredibly bland food & having daily blood tests and IV transfusions
• I'm up so early, I can watch the daily miracle of the dawn from my balcony, really conscious of the earth rolling from east to west as the sun rises over the tall gum trees behind the university
• Being up so early, I have time to do some stretches & gentle exercises before breakfast
• My eczema is temporarily suppressed - I can eat foods from the nightshade group- tomatoes, capsicums and chillis, that would normally bring me out in a rash within half an hour.
  At last my homegrown basil can combine as it should with fresh tomatoes for the perfect vitamin-rich summer salad!

A Christmas Break

Since my haematologist thinks I’m safe until I see him again mid-January, (so long as I’m sensible), and has given me permission to travel, I’m able to accept my friends’ invitation to spend a few days with them and their cats over Christmas in the beautiful Blue Mountains town of Katoomba.