A Disastrous Setback…

This afternoon I stood up from my wheelchair to go into the kitchen (making soup – see the following post tomorrow) – and promptly greyed out and keeled over backwards.

Apart from the injuries to my back and pelvis from the fall (mostly bruising as far as I can tell, though a similar fall some years ago resulted in a hairline crack in a pelvic cartilage which, while not hugely painful, creaked horribly whenever I moved – at least there is no sense of a break this time).

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I can now treat Pulmonary Oedema at home – at last!

What follows is yet another letter to my GP sent two days ago. For new readers not aware of my history, it’s self-contained and self-explanatory. It refers to my most recent hospital admission with another severe bout of Pulmonary Oedema, and my encounter with a doctor who, choosing to ignore 19 years of evidence** has decided, based on no new evidence or tests, that I don’t have COPD.

**Not to mention the 49 years prior to that of bronchiectasis and asthma, chronic bronchitis and pneumonia, that virtually guaranteed I’d develop COPD.

The result was that today I finally got the Salbutamol and Atrovent nebules I asked for. The hospital uses them together to treat Pulmonary Oedema – I want to do the same thing at home in the hope of avoiding (a) winding up in hospital, or (b) dying – a very real possibility, as you’ll see.

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Solving the ambulance-wheelchair problem…

… and also avoiding further damage to my legs (there is no doubt in my mind that the devastating resurgence of Lymphoedema was caused by being deprived of my wheelchair for a week by the ambulance crew who refused to transport it).

Originally the chair was set up to carry a holdall in front of me. Since the growth of the ulcer on my right leg, and the return of Lymphoedema and subsequent bursting of my left, that’s no longer feasible (way too painful and potentially damaging). Add in the dangerously unhelpful ambulance crew who refused to transport my small manual wheelchair (and who also connected me to an oxygen bottle they’d forgotten to turn on!), and it all needed a rethink.

This is it:-

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The Ciprofloxacin Disaster…

Trigger warning – suicidal drug side-effects.


My GP prescribed Ciprofloxacin a few days ago to treat potential infection of my resurgent bilateral lymphoedema.

It damn near killed me.

Reading the Patient Information Leaflet (PIL) and the Cipro pages, particularly those covering side-effects and drug interactions, at Drugs.com showed why.

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Bilateral Lymphoedema Returns…

On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.

I didn’t get one – I got a phone call instead.

In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.

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Caldo Verde, Tweaked…

Caldo Verde is a peasant dish from Portugal, a soup primarily of potatoes and a species of giant cabbage, traditionally served with a scrap of chouriço sausage and cornbread. This is my high-protein take on it, with a great deal more sausage, soya beans, and served with Tesco sourdough bread. OK, so it bears more of a resemblance to ciabatta than sourdough but it’s good bread for dunking in soup as it doesn’t fall to pieces. Goes well with cheese too.

I don’t think the Portuguese would approve of my less than Spartan version of Caldo Verde, but it was timely, made just hours before the return, on a massive scale, of my Lymphoedema, accompanied by pain at a level that totally overwhelms my morphine, despite the recent doubling of the Oramorph dose.  Part of the treatment for that is a high-protein diet, hence the soup.

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Doctors are Dangerous – Addendum – They are out to get us…

Having just read this post The lies of IDS to his own party… a thought has occurred to me regarding the scurrilous attempts to downgrade and trivialise my lifetime of serious illness as described here.

Am I seeing a deliberate Tory doc attempt to rubbish my benefit claims?

Paranoid? Damn right I’m paranoid – anyone who is chronically ill should be, because they are out to get us, make no mistake about that.

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Doctors are Dangerous…

And yes, I really do mean that.

Every time I’m admitted to hospital – which is likely to happen quite a lot in the future – whichever consultant I’m assigned to puts his or her own spin on what’s wrong with me.

The latest one to do that announced that I don’t have COPD. Yes I bloody well do. COPD was diagnosed in 1996, and that diagnosis has been confirmed and re-confirmed many times since then. Now we have this bloody doctor attempting to re-write history, and change my meds radically, to boot.

I have one policy and one only regarding my meds – if they do their job, do not mess with them! She changed them. I objected on the grounds that if it ain’t broke, don’t fix it. She ignored me. My GP has pushed through the changes without consulting me. That will not stand.

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Getting my life back – Part 637…

Dateline Good Friday 2015… Still offline.

As you might know, I eat just one meal a day, in the evening. The reason for this is that if I eat breakfast and/or lunch I can’t stay awake. No-one can tell me why so I long ago opted for the one meal a day solution – until now.

A few days ago I woke with a craving for Heinz tomato soup for breakfast. As I had a few cans in my emergency soup stash I indulged the whim and had a very productive day without once nodding off. Even created a new recipe (which, if early tastings are accurate,** is remarkably good).

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