First, a couple of tips:-
(1) Even if, like me, you have only 2 or 3 coffees a day, backflush your group at least weekly, using Urnex Cafiza or something similar – you’d be surprised at how much crap is hidden on the top side of the dispersion screen, out of sight – I certainly was when I removed it. If you have a suitable screwdriver (No. 2 Posi – and do use the correct size, the metal of the screw is quite soft and easily damaged), take it off and see for yourself – then give it a scrub. When you replace the screw, put a little food-grade lube on the thread, stop it seizing. You will, of course, need a 58mm blind filter also called a blanking disc, for back-flushing (i.e. one without holes). That link also has other sizes, plus downloadable instructions if you don’t already know how.
One of the things which adds nuisance value to my life is slopping a cup of coffee all over my keyboard. Not a disaster – it’s spill-proof – but still a mess to clean up.
Thing is, I have a workstation, rather than a desk, and tend to put my coffee mug in front of me on the monitor shelf – all too easy to snag the handle when reaching for something among the inevitable clutter (I keep my early-day drugs there – the ones I take at various times between the batch I take while in bed at 06.00, and the midday batch – and it’s these that cause the problem.
Especially when it’s in the hands of a so-called expert who really isn’t.
As you might know by now, the person I’ve dubbed the Heart Failure Denial Nurse has announced to the world, based on no evidence whatsoever, that I do not have heart failure. I’m still awaiting, with bated breath, her idea of what, if not that, is actually killing me.
Hospital Hygiene Problems…
I have a major problem when in hospital – staying clean.
The hospital does not have any wheelie-friendly bathrooms, with low-level suites, for example, leaving me with only the option of being given a bowl of water and a bottle of Hibiscrub at my bedside.
The same problem extends to shaving, and cleaning my dentures, and for the latter I insist on a sink with hot running water, to the annoyance of the staff who prefer to give me a small basin of water or, even, to take them away “for a bit of a scrub”. Er, no. Never gonna happen.
Shaving is way down my list of priorities when I’m ill.
And during my last stay – and this was in a hospital that obsesses about infection control – I watched as it all went belly up.
There is, it seems, no shortage of people willing to fuck up my life. As you might know, I had an appointment with the Heart Failure nurse. The letter which follows is going to my GP – it is self-explanatory. Names have been redacted so as not to give the bastards any excuse.
August 28 2014
Dear Dr. Xxxx,
I have had a staggering phone call from Heart Failure Nurse Xxxxx, to tell me that neither you nor her believe I have heart failure. Frankly, that beggars belief.
Dr. Xxxx is convinced that I have. As am I – I have lived with this condition since early 2011 – I have no doubts. Because, if not heart failure, then what?
This is a letter to my GP regarding my discharge summary from the hospital after my recent admission. It is riddled with errors and they, along with some bizarre recommendations, make it dangerous for me.
Dear Dr. Xxxx
I’m writing to you because I find myself at odds with my Discharge Summary. It is, in short, inadequate and dangerous. And I must also say that at no point did any doctor discuss any element of my medication with me. The only person to do so was a pharmacist, and she raised no questions at all.
Neither were any tests relevant to my respiratory condition carried out, not even something as basic as PEF or FEV1. Not this time, and not last year, either. Continue reading
Today I’m reinventing my Harissa recipe as I think a return to the cardiology ward might be lurking in my future. In fact, I’d put money on it, as this problem isn’t going to go away.** Above all else, other than survival, I need protection from its hideous, saltless, food.
**I won’t say I’m not still scared of dying – the only people who are honestly not are the young who, for the most part, are decades away from having to confront their own mortality. Me? Resigned, I suppose. And scared. Not of death, per se – that’s inescapable (but if it happens it would be nice to go to bed and not wake up), but dying of pulmonary oedema, as I almost did last week, is a terribly hard way to go.
I was asked for pics, so here they are. It’s a very humid day and that affected the hydration, causing the dough to spread rather more than it rose. What the hell, it’s still bloody good bread! Prior to the first proving I use a stand mixer for the grunt work – essential in Spoonie World.
The dough, first proving completed, shaped, and sprayed with oil to stop it forming a crust. Continue reading
I am not allowed salt.
This is a crime against nature – everyone needs salt.
It’s particularly cruel as many of us with Addison’s Disease crave salt more than usual. What hasn’t been explained is whether this craving is driven by an actual need – I must find out. (I did, see*** at the end.)
In hospital last week, in the heart ward while the pulmonology tossers tried to claim me and the heart people – in whose hands my recovery resided and in whose ward I was – just quietly got on with their thing (I’d have preferred a more hands-on approach, like consulting me before prescribing a drug, Ramipril, I can’t take).
That my heart really is a serious problem is reflected in the fact that the pulmo pillocks have screwed up my meds while announcing no further treatment or support is needed, while the heart people have consigned me to the care of the Heart Failure Nurse service, who are scheduled to put in their first appearance on Thursday. I have no idea how this works yet – whether they will routinely visit to monitor me, in much the same way as the Community Nurses, or whether I call them at need (though, really, if I do need help I need to be in hospital).
After being diagnosed with Pulmonary Oedema in hospital, I’ve been doing some research.
I rather wish I hadn’t but as I firmly believe that knowledge is preferable to ignorance I had no choice. This is Pulmonary Oedema. The Mayo Clinic – which is where that link will take you – is one of the more reliable sources of medical information on the Web.