Lymphoedema update…

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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11 thoughts on “Lymphoedema update…

  1. I haven’t been keeping up with blogs ron, but I feel rotten knowing what rubbish you’ve been through and I’ve missed. Huge hugs for you and some hope that things turn out much better than the worse scenario. X x

    • No need to feel bad – it’s hardly your fault 😉 Did make me realise I hadn’t seen you around for quite a while, though, and made me wonder how many others had sort of slipped through the cracks unnoticed.

  2. well heres some good.news for you, though it all depends on how people think. i think ive mentioned my brother in law in the past,briefly. hes a very bad type 1 diabetic, very obese, was over 30stone on admission to hospital about 8 weeks ago. he too suffered from lymphoedema and landed up with a bedsore on his heel. for years he has been begging on the docs to take his leg off because of the pain. the bedsore on his heel became infected. leading to a bone infection. last week they finally amputated his leg below the knee………….what a difference in the man. he has gone from continually being a misery guts (not that he didn’t have good reason for being so i might add) who had my sis running round after him …doing this that and tother etc.demand demand demand.. to how he used to be, happier than we have seen him in ages,years even, doing things for himself hes not done in the last couple o years at least. lost 2 stone of his weight.and looking forward to having a prosthetic leg fitted.such a difference…. ok to some, including me, losing a leg would be devastating, but to him its a real relief. light at the end of the tunnel? just saying….it can happen

  3. I agree wholeheartedly Ron – when it’s too much and there is nothing but pain upon pain to try to control, plus the fact that other illnesses/disabilities are in the mix, then the only option left is the amputation. You know I had mine in mid January and just felt so relieved for it to have gone that it’s pure pleasure in a way to have rid of the huge problems and pain it causes. Once that’s done and everything is healed, a prosthetic is fitted, you get used to it ect. then you can leave that baggage behind and concentrate on the other illnesses/disablities.
    I’ve not been too well the last few days due to the damp coming in, my knee, hands/fingers and full leg have been set off and are draining me.
    I keep getting cellulitis in my good leg and have been on and off antibiotics for nearly a year. I went to the GP this morning and he said that if its no better by Tuesday of next week then I am to see him again on the Friday. I now have to find out information about recurring cellulitis so I know what I’m up against.
    You take care Ron. Hope your anger dissipates soon as well as the pain, enough to let you have a couple of good nights and days.
    Jay x

    • If he hasn’t done it already, Jay, your GP needs to swab your cellulitis so he can treat it with an organism-specific antibiotic – not, if my experience is at all typical, that this makes the slightest difference, but it’s supposed to!

      I’ve just started yet another course of Flucloxacillin today. This, as I’m tired of telling my GP, does absolutely nothing but, hey, it’s cheap so he keeps dishing it out!

      And, of course, I keep getting worse.

      Ron.

  4. Jay, that is exactly what my brother in law said…. about the relief he felt. there’s to be a tv prog ..think its about diabetes. he was one of the patients interviewed. when i know when its going to be on ill try remember to leave time/date etc on here.
    it should never have to come to losing a leg/part of one though. especially if it brings the relief both Jay and Andy speak of, as it shows how bad the pain must have been before amputation. and that is bad in this day and age.

    • Oh please do leave the details if you find out, I would be most interested in it 🙂
      Just to let you know hugosmum70 that my amputation was due to a surgeon’s neglect during a “helpful” operation, which wasn’t so helpful after all. But hey, the leg has gone now and it is a relief as I know it can never, ever be as painful as it was and also, no infection will ever come back 🙂 I wish your brother-in-law well 🙂

      • once again the docs that are always right weren’t…..it seems.What is WRONG with our medics these days??? our old family GP’s worked with much less technology/instruments and knowledge yet rarely got things as wrong as most do these days.(not saying they NEVER got it wrong..no one is perfect after all ) Is it too much reliance on computerised diagnoses?> or what? or just bloody minded and up their own arse’s to listen to patients who ,after all, know what is normal for THEIR OWN bodies.
        i will try and find out about that TV prog. meanwhile will pass on your good wishes to my B-I-L. thanks

  5. I can empathise with your ‘visits’ from Mr Sod, I find myself in the same boat albeit via different illnesses; so I say let’s share our anger and pain.

    All best Ron, from my meagre resources xxx

  6. Evening Ron,have been thinking about the contents of your post on and off a lot today….
    your friends in similar situations can offer their take on your condition and I expect some empathy is a comfort, and a medic might offer some helpful advice. As I come into neither category I just try to listen to a friend who has been a great help with my efforts to bake bread (more of that later). However, as one of those out here in the ether, it leaves one feeling very inadequate to be unable to offer you anything especially in the way of practical help. That may be one reason for ‘silence’ from some – they don’t know what to say!

    One of the most difficult things about your condition/s – apart from the pain and misery –
    I believe, is that you don’t seem able to trust anyone in the medical profession dealing with you – though it sounds to be with good cause. That is quite a scarey thing I think, and a very vulnerable position to be in. I hope the guy you are going to see on 14th is skilful and straight talking.

    With regards the bread, I think you are right – I am trying too many things ( without success I may add) – my brother said to me yesterday ‘… way I see it, you are making a mountain out of a wholemeal 🙂

    night night.

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