Business as usual

Existing diagnosis is intact. I will admit to a flash of disappointment about this. Although the new idea seemed a tad unlikely due to the rarity of the condition, it was a reasonable hypothesis. And all in all, despite the general unpleasantness of the process, I’m grateful when anyone puts their mind to looking at things afresh – treating the patient, not the diagnostic label.

I still have a bit more testing to organise, but it’s in the realm of making absolutely positively sure there’s not something else, rather than a potential new lead.

It’s amazing what a difference a husband makes – he came with me to the most recent appointment and Mr Hostile Doctor had a personality transplant on the spot. In fact, afterwards my husband described the doctor’s demeanour as sobered and confused. I started to feel compassion for him, the poor man has a list of very strange test results to try to make sense of.

Welcome to my world, Mr Doctor. It’s a parallel universe, the weird medical version of Alice in Wonderland.

Next post: happy news, and nary a mention of health matters.

If wishes were fishes

I was referred to a consultant physician and endocrinologist for a third opinion on some medical things. The appointment was unexpectedly awful, like being in the witness box for a dreadful crime. The crime of illness. He interrogated me with gems such as: "So you’ve done absolutely nothing for the last 12 years, is that what you’re telling me?" and ordered every test known to humankind. He was the epitome of rude skepticism, openly challenging everything I told him.

I returned home, disappointed to have used a precious trip out of the house on such an aggressive encounter, shed a tear under the doona, then pulled myself together and started organising the tests. It’s taken months and great expense to work through the list. I thought I already had the most tested bodily fluids in Australia, but apparently not.

He has since conferred with his learned colleagues at a posh hospital interstate (once my results started to come in he must've seen I wasn’t such an unreliable witness after all) and they collectively think I may have a rare condition with lots of syllables. As my GP joked, he’d never heard of that one before, but there’d be a support group for it in America, ha ha. No final results back yet, but surely I’m not the only person with an ME diagnosis who fervently wishes to find out they’ve got something else? Something more treatable? I don’t mind how hostile the physician is if he figures something useful out. My GP and I have our fingers and toes crossed.

I’ve looked this condition up and there is a medication for it. Hope springs eternal. I always suspect that around the next corner is a breakthrough, I’m incorrigibly optimistic. Along the way the cardiologist told me, among other tachycardic tidbits, that the secondary OI or POTS component of things is much worse than we realised, which in his opinion explains the ongoing symptom severity and extreme lack of functional ability.

Memo to my heart: settle down and stop acting like I’m swimming away from a shark. Let’s sway gently through the ocean grass fronds like a seahorse instead. It’ll be nice.