The surgery to amputate my right leg, which I’d hoped would have happened by now, clearly isn’t going to, not least because my surgeon has chickened out (while absurdly trying to blame me for “changing my mind”). That is simply not true.
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).
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.
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.
This letter is going to my GP overnight. The title of this post is not hyperbole – if he won’t change his mind I can see no way forward.
Dear Dr. Xxxx,
I have just had a phone call to tell me you have refused to issue a prescription for morphine sulphate solution (Oramorph), as I am over-using it.
I am not.
At the rate of 40ml per day (10ml every 6 hours), a 300ml bottle lasts 7.5 days. The current bottle was started at 18.00 on November 27 – that’s 7 days ago today. I have enough left for tonight and possibly tomorrow. That is not over-use, that is using it as prescribed. And absolutely as needed.
After the painfest that was the debriding cloth** last week, I made an executive decision and, last Friday, decided not to change my ulcer dressing.
**I was amazed to discover that some people actually like the things!
There were several reasons for this, not least the fact that I felt so shitty I couldn’t face it (I was due to do it myself). As an unexpected bonus, though, the dressing hadn’t leaked and the pain had largely abated. I was still getting savage breakthrough pain, but the constant, soul-eroding, pain that hasn’t let up for a moment in two years was mostly gone. Well, OK, not truly gone, but subsided to the point where my morphine could deal with it. So I thought, sod it, and left it alone.
As in I’m positive it really is healing.
We use 5cm square Aquacel Ag silver-impregnated dressings. Some 3 weeks ago we were having to use 2 of them to get full coverage, now just one is more than enough. Continue reading
What follows is a letter to be handed to my nursing team on Wednesday.
Notes on Compression…
May 26 2014
Let me start by saying that I feel very strongly that nobody involved in my medical care truly grasps just how much pain I’ve been in this past year, and with few exceptions, like today, still am.
It is, and I say this with no melodrama intended, a very rare day when, as a direct result of that, killing myself doesn’t seem a better choice than carrying on. There is simply no end to the pain, and I have barely slept as a result for almost 2 months. I seriously doubt my ability to carry on much longer if nothing changes. The only reason I’m still here is that I hope something will change. That hope is wearing very thin.
I came up with this DIY design almost year ago, but was too ill to make it myself. Looking at it you might wonder why that should be so, as it’s very simple – the question should give you an idea of just how ill I am (plus I only recently had the idea of using the toilet frame). Even now, and I’m very much better than I was a year ago, it was exhausting just fetching the frame from the bedroom and cleaning it up (it’s not been used for years – I have another in the bathroom).
I’m supposed to elevate my legs, particularly my right one which is worse, by far, than my left, and currently sports a blossoming ulcer (my nurses tell me it’s showing signs of healing – I hope they’re right). Continue reading
My nurses are taking the piss.
Yesterday I was told that my two lesions had merged into one big ulcer. Not happy, but not unexpected.
Thing is, I can’t actually see for myself due to the awkward location – I can see it clearly only with my camera and it was late yesterday when I thought to check for myself (I take photos at every dressing change). This is the result. Continue reading