Wow. This has been a post loooooooooooooooong in the making. It’s been a busy past few weeks (months?)…what with more moves, a couple of overseas visitors, various out of town assignments, plant induced journeys, a consulting project two doors down from hell and well, that little hospital stint. It’s time to break out the bubbly!
Why? Well, I’ve got good news and more than sufficient cause for celebration. The hospital incident went better than expected. Better than I’d even dared hope it might. I guess it would help to know why I landed up between those white walls in the first place (the how is simple – I drove). A synopsis, then: 6 years ago, whilst pursing the path of a raving workaholic, 1x pituitary apoplexy stopped me in my tracks. Effectively, the stroke blew out my hormonal motherboard, leaving me with a rare, life-threatening, chronic condition :: panhypopituitarism (babelfish translation for normal non-medical folk: absolutely no function in hormone grand central. nadda. nothing. niks… )
So what? – you ask. How is this a big bloody deal? As an ER of doctors helped me realize, hormones are massively more important than simple mood regulators. Two shortages have severe complications since their ‘lack’ results in swift and lethal consequences. These hormones are:
- cortisol – which is basically adrenalin, akin to human electricity. Without which, it’s like pulling the plug: game OVER
- and vasopressin – with our bodies being around 80% water, absence of this hormone can be likened to pulling the bath plug… liquid pours out, resulting in sure fire dehydration: super FAST
When I first landed in hospital in NY with a bevy of specialists trying to figure out what on earth was wrong with me (I’d spent 27 years pondering the same), the only member of my family able to enter the States was my cousin, Hal. Who happens to be a vet. When he saw how obsessively I was drinking (and how often I had to visit the bathroom) he insisted the young, vaguely hysterical and clearly out-of-his-depth endocrinologist call in a urologist. Less than 3 hours into the liquid deprivation test, my body started to shut down: I passed with Diabetes Insipidus (DI).
note: to avoid further confusion (a lot of people get caught at diabetes), there are two main branches:
- mellitus (‘sugar diabetes’) the insulin dependent kind
- and insipidus – the dehydrating strain named such because the urine is so dilute (having effectively drained all sodium from the body) it’s practically insipid, like water.
Long story short, exhausted and barely a shadow of my former self, I returned to South Africa where I found an endocrinologist in Durban who understood the situation and gave me hope of feeling ‘normal’ again. Already convinced that if the blood in my pituitary resolved, the cells would have the ‘space’ they needed to regenerate. So sure was I, I nearly underwent brain surgery to remove the bleed. I called it off the day before after one particularly profound self mastery workshop. But that is another story. For another day.
Fast forward to last year: after making various life affirming changes (like leaving The Bay; taking responsibility for my mistakes, choices and self; committing to writing; beginning body work, meditation and… it’s a long list, worthy of an entire chapter) my ‘stable’ drug regime went out of kilter and I found myself suddenly experiencing hyponatremia. At my quarterly appointment with my Cape Town endocrinologist (another lovely medical man), I told him I’d started cutting back on DDAVP as I felt like I was overdosing. Bad patient… In February, just before leaving for Zim, things went wonky again so I cancelled the trip, called it quits with the trophy hunting Alpha Male, cut my
losses meds to 1/4 tablet per day (a now negligible dose, little over 10% of my original regime) and headed to the next consult. I was pretty damn sure I was getting better. My doctor was less convinced, being rather sceptical of my ‘alternative’ practices and healing beliefs. But he decided to humour me and we scheduled my 2nd liquid deprivation test for April.
Monday woke me with ambivalence: a heady mix of excitement and fear. A dear and ‘connected’ friend smsed me early: “It’s going to go even better than you think!” At 6am, I swallowed my eltroxin and covocort, summoned every vestige of self restraint and forewent my morning coffee. I drove to the hospital, thinking: “Typical – heading off on my own to face a dragon. When will I learn to lean off the Ms Independence pedal and ask for help?” Admittedly, I would’ve liked the company had I not been too stubborn to ask for it, so I took a pillow instead and checked myself in. And so it began: the repetitive ritual of hourly blood and urine tests. And nil per mouth. Not an ounce of liquid allowed in – and I’d given myself a 2 hour head start by avoiding so such as a drop after my pills. Every drop out carefully measured.
The one comforting sign was the name of the kindly path lab vampire whose surname was Love. Yup. Being bled by love… ironic enough for ya, Scar*let? The results starting dripping in – and my sodium count went up (with DI, because liquid floods out uncontrollably, sodium concentration drops as it’s leached from the body). By lunchtime, long past the cut-off my doctor had predicted (SN: “Can I at least have lunch – I skipped breakfast?” Dr D: “The test will probably be over by then so it won’t be a problem”.) I was still liquid free and going strong – and I’d already surpassed my previous 3 hour record.
We finally stopped the test at 5pm – almost 12 hours from my unofficial start time. I dropped a little over a kg in body weight (another sign and what used to be a nifty last minute weight-loss trick – skip a DDAVP tablet and I could lose as much as 3kg in a couple of hours); my urine (yeah, right: overshare? I never imagined I’d write so freeily about the intimate functioning of my body. And here I am…) had concentrated beautifully and my sodium levels were ‘normal’. A slightly incredulous Dr D sat beside me, astonished by the results (and to be fair, so was I: I’d expected ‘improvement’. The total absence of a condition I’d be told was life long was, well, pretty much a miracle). An upcoming endocrine conference meant he would be seeing my old Durban doctor. Looking over my results, he laughed: “I’m going to cover your name, show this to Dr P and ask him to conclude if there’s anything wrong. When he says the results indicate a normal patient, I’ll show him they’re from you!”
( now there’s another little story – I specialise in them – which involves me and my ‘vomiting-myself-silly’ party trick which came soon after the test ended and my doctor went home. but that’s for another time and effectively helped us confirm other things. for one, that my doctor prefers the normal scar*let he knows. the sick one freaks him, and just about everyone who has ever had the misfortune to meet her, out. when I do get seriously sick and weak, it feels rather frightening. it clearly looks pretty awful too… )
I saw Dr D two weeks ago for a follow up consult. He has, as is typical with most conventional medical minds, had a hard time accepting that my body has healed itself. He tried to conveniently argue that I must have been misdiagnosed, that perhaps it wasn’t a stroke. I took my heavy stack of MRI scans so he could see the history of pituitary bloodshed (he now has some other specialist pouring over them). We went through our usual series of checks and a disbelieving smile began to play with his features.
“What?” I asked, thinking he didn’t believe I was being truthful about how well I was feeling.
“Nothing” he said. “I’m just feeling cautiously optimistic”.
Which is about as good as it gets from the man in the white coat. Then came his turn to he astound me: “Let’s aim to get you off all your meds by the end of the year.”
So, dear friends and patient readers, this is where I find myself today. Hopeful. A whole lot more than ‘cautiously optimistic’ :: full blown OMG deeply grateful for this winding journey and my body’s innate wisdom and will to heal. I have been off DDAVP since April. I stopped the oestrogen/progesterone patches after the hospital visit (my brand stopped being produced by those less than ethical pharmaceutical fiends, but that turned out to be a blessing in reverse) and I’m on half my original steroid (cortisol) dose. Which is MASSIVE when you consider the original prognosis and medical precedent. I’ve always been an exception to the rule. And something in me believed I could heal from the very start. And slowly, very slowly, I’m learning to listen and trust that voice. For it speaks MY truth…