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Lymphoedema update…

Posted Sep 20 2013 10:57am

There are days – damned few, admittedly, of late – when I don’t feel too bad. Sod’s Law dictates that, on those days, no-one will ask how I am!

Conversely, on the days when I feel like hammered shit, everyone seems concerned!

Now, don’t run away with the idea that I’m moaning about solicitous friends – I’m not – but the way it works out a lot of the time, I might come across as someone who never stops moaning!

And then there’s a friend from whom I’d expected more understanding when I took a turn – several turns in fact – for the worse recently, but who went off on a major strop because she apparently can’t comprehend why, when she thinks I should be getting better, I’m actually not. Well, here’s the thing – it doesn’t matter what either of us want, or were expecting. The only thing that counts is what actually does happen, because, to put it bluntly, shit happens. And in chronic illness it happens a hell of a lot!

In lymphoedema the shit could cost me my leg (and believe me when I say I wouldn’t be sorry about that**). It could also cost me my life (information regarding mortality is sparse and sometimes contradictory, but rarely good). At best, even if nothing worse happens, I can look forward to years of misery, and I would sure as hell be sorry about that!

**I’ve an appointment with a vascular surgeon on October 14, 2 days after my birthday (Oh joy!), and if there are no medical solutions forthcoming – which seems all too possible – I will want him to look seriously at whatever surgical options there might be.

I know that’s not what many of you want to hear (nor do I, the thought of even minor surgery scares the hell out of me), but look at it from my perspective – I’ve been seriously, and frequently extremely painfully, ill for all but the first 2 years of my life and, one way or another, I just want an end to the pain, not least because the older I get, the harder it is to bear. Just, whoever’s running things, give me a fucking break for once!

I must stress that I’m not feeling suicidal at present (but I am seriously pissed off as you might have gathered), though maybe saying that is a mistake – I got taken far more seriously when I was suicidal – but it’s not something I want to abuse by exaggerating how bad I feel. Nor should I be put in the position of even considering that. Given how potentially serious this condition is, any help I need should be there for the asking, from antibiotics to tackle the constant cycle of infection and re-infection (cellulitis), to whatever analgesia it takes to dial down the pain to a survivable level – and keep it there.

See http://www.merckmanuals.com/professional/cardiovascular_disorders/lymphatic_disorders/lymphedema.html#top for information. The Home Edition is, in my view, too simplified to be useful.

And finally, remember that numpty consultant who claimed I was dying back in April? Well, the more I dig for information the more it looks – and I stress looks – as if he was right, but he expressed himself so extremely badly, confusing conflicting conditions, that it’s hard to know for sure what was going through his head besides a crude attempt to blackmail/bully me into having tests I didn’t want and, as it turned out in the end, didn’t need.

All he succeeded in doing was clouding the issue beyond hope of easy clarification, but the search continues for definitive information.


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