So here I am, happy in the belief that I have my Addison’s under control. I don’t have it licked, you never do, it’s a gift that keeps on giving, but I thought I’d reached an accommodation with it.
I couldn’t have been more wrong.
This past week my nausea has returned, as severe as ever it was. No idea why – that’s something I really did think I had licked, but no. Rummaging through my Addie’s documentation, of which there is a hell of a lot, I discover that “Dizziness, headache, stomach ache, extreme weakness, chills, fever, confusion, nausea and vomiting are typical signs of impending adrenal crisis.”
Of that list, only fever has been absent. I was going to say vomiting, too, then I remembered the state of my PJs – I’ve obviously been puking in my sleep. Not a lot, but even a little is dangerous.
As for confusion, well, I’ve found myself more than once this past week, sitting in front of this infernal machine and wondering what the hell I did next to make it work – something I should know in my sleep. And today is laundry day – or it would have been if I hadn’t completely forgotten.
So, I’m screwed, and teetering on the edge of a full-blown Addie’s meltdown, for which I took the recommended additional 20mg of Hydro.
And now I need to write to my GP again, to keep him in the loop. I have to remind him of the nature of Addison’s and my almost constant need to take additional doses of Hydro because of the parlous state of my health, which keeps me almost perpetually stressed. With Addie’s that’s seriously bad news, as is the return, a few nights ago, of angina to the playing fields of fuckuppery. Shorter version, all of that means six month’s supply of Hydrocortisone is NOT going to last for six months. It’ll only do so at the absolute minimum maintenance dose of 30mg a day. I need way more than that.
When I take extra Hydro, as I have for the fortnight that ended last Saturday, while taking Doxycycline for my infected leg ulcer** (a double dose, 30mg x 2), I’ve taken 10mg from my prescribed stock plus 20mg from my own personal stock.
**Did the job, by the way, though I was surprised, when I sent the message that I needed Doxy (a broad-spectrum antibiotic), to get it – has my GP finally realised that I actually do know what I’m talking about? It would make my life very much easier if that were the case.
Firstly, my GP can’t see just how much Hydro I actually need to survive (more than he thinks, I suspect, and that’s abiding strictly by the NICE guidelines) and, secondly, the time might come – and who can tell when with this incompetent and corrupt government – when I can’t afford to buy my own drugs.
So I need to bring my GP up to speed, get an assurance that he will prescribe what I actually need, and then stop taking my own Hydro, keeping what I have left for emergencies.
Which reminds me, I had a similar conversation with another doctor some years ago – GPs seem not to grasp the fact that, say, 28 day’s worth of tablets or capsules might not last 28 days. For a start, I often find tablets are broken inside their blister packs, or by the action of popping them out and some –especially if they’re enteric coated – are dangerous in that condition. Similarly, capsules can split, spilling their contents.
Some tablets, uncoated or film-coated, are safe enough as long as they haven’t lost any of their substance, creating a sub-therapeutic dose, or aren’t so smashed you just can’t tell if they’re all there. For some modified release capsules, though, the actual capsule sometimes plays a part in that process, as well as the contents, so are best avoided if damaged.
And even if they survive their packaging, they can be dropped, especially by me as my right hand doesn’t work too well, and either fall in the sink if I’m getting tap water, or roll under the fridge-freezer if I’m getting chilled water (never take meds with tea or coffee, or any other hot drink – they dissolve too quickly). And some I can see hit the floor – but then they appear to flip into an alternate universe, because I sure as hell never see them again!
So I explained this to the GP and he said, “You know, that’s never occurred to me.” Why not, ffs? It’s so goddamned obvious it should be GP Training 101.
The return of angina is likely to be my biggest cause of stress right now, and I really need a cardiologist who will run tests that aren’t dangerous to me, rather than the cheaper but risky ones that I’ve been offered in the past, and refused. There is no way in hell, for example, that I will submit to a double catheterisation of my heart, which involves crossing my calcified aortic valve with one of the catheters, which, in turn, gives it a 24% risk of causing a stroke.
There is a safe option, using an MRI scanner plus an injected contrast medium, which they won’t do. I’ve also been told, though I don’t know if it’s true, that they can see what they need to see via an echocardiogram, of which, to date, I’ve had 4, but no feedback from any of them.
There are four potential causes of the angina. Oxygen deficiency, first diagnosed at Stockport Infirmary in 1986, is possible, but given my minimal level of activity these days, that seems unlikely. The culprit is either COPD, heart failure, or aortic valve calcification and stenosis.
All three are progressive and actively getting worse, and either of the last two will kill me sooner rather than later. Possibly both will as they interact.
My COPD isn’t helping either, though it has some way to go before reaching end-stage and being considered life-threatening. Fact is, though, it imposes a considerable load on my heart and pulmonary circulation, to the serious detriment of the other two conditions.
It’s a no-win situation.