Day 30/31- no one get too excited, I don’t have kittens :( By no one, I mean me. Kath, don’t get too excited. *****UPDATED DEATH TOE PIC ALERT*****

…For anyone who can’t see the featured image, its good enough to repeat! Hell its basically worthy of a spin-off series…

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I keep finding above artistic endeavours scattered throughout my notepad and every one is truly innards warming.

Tuesday involved lots of crying again – and instead of typing in the evening, I started making mittens instead so as to avoid ranting and spewing vile language. I know we all know Weenie was finished… But here he is looking resplendent with both pretty button eyes and snazzy scarf. Featuring also in my art gallery, Psy Tart, who we have all already met and Eric 😀 I can’t tell you exactly WHAT Eric is, but can confirm that this is an original and  he is marvellous.

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Was so weepy yesterday – I was reaching the end of my tether; Dr was back from annual leave but had clinics elsewhere and no one else was answering my questions still. Plus it was a dressing change day. Never helps.

********LAST CHANCE – DEATH TOE BELOW!!!*********

 

 

 

 

Below is Death Toe as of Tuesday afternoon…

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Now as we can see, Death Toe firstly is pretending to be a ninja. This is not particularly mature, but I can deal with this, as really, black and shrivelling is actually the ideal situation in the whole auto-amputation scenario. The very clearly defined edge is also good and there has not been the slightest suggestion of the necrosis spreading beyond that for over two weeks now. Mum has suggested if Death Toe does auto-amputate that we call him Zorro due to the zig zaggy demarcation line :/ The bad bits are that – sorry anyone eating 😦 – for the first time in a while there was definite dressing ooze, suggesting it wasn’t as dry as it maybe should be. There was also *bawk* a very very faint smell of… putrefaction 😀 (a good word) when the dressing was first moved. Again, very new and was enough to have me absolutely distraught in itself. That stupid tiny little split down the side is obviously tiny but was very very sore – and is what is kicking off again today… The pain from such a small bit of separating is hideous, so I cannot even fathom what more will be like.

Oh the cool cube pattern effect is the gauze… and any yellow residue is incredibly expensive honey!

Right no more Death Toe pics. I did have fabulous multiple friend visit time after (or before? can’t remember!) and they brought presents and love and took me to the cafe where I managed to convince them to sell me a plate of 50/50 tuna mayo and chips! That was enough to stop me crying… I think … Unless I had a snot on the phone after that…? Ahhh yeah I did 😀 But after THAT I just started making mittens with an actual real life pattern involving different stitches 😀

Today has in comparison been delightful! There is another breathy mouth open sweet eater in my room, but I didn’t even want to kill them too much…

My fave med students (yes, if you are reading, I’m not supposed to have faves, but you have earned it by now!!!) came to see me again for an update and all sorts of fun adventures. We covered all the good stuff such as yesterday’s Toe Shoot, all the weird little new symptoms that are either side effects from meds or a bit of a flare – such as my incredibly trembly hands and very hard to focus vision (you get Dr points for passing that one on by the way, she was impressed, and its nice to know you were bothered and did something about it!). Erm… Oo then we had some physical exam practice including stomach exam – clexane bruises got an airing! – complete with fabulous percussion noises and the 5th and 7th cranial nerves which was all sorts of grimacing and face scrunching 😀

Also had a visit from the junior Drs on the team and they had the whole new symptom, toe update etc and basically managed to wangle my Dr coming for a proper long chat this evening. The summarised version is no more iloprost to be expected (wooo!), outstanding tests and biopsies all getting followed up on urgently, the stupid infuriating cryo flask issue is being looked at asap (e.g. me to flask, flask to me…) and the referral (which was so far of a verbal, sharing info and then being given tests to do in the meantime) is being raised as officially as possible, as there are very few beds down there, so it could well take weeks and weeks anyway, by which point all of the results will be back and I can only imagine I may be shortly in ownership of a diagnosis…. Someone is coming to check my vision asap – today haha! (this being a middle of the night post) – as it is possibly a temporary side effect of the meds and stress etc., but could also be a small vessel symptom covered by existing suspects and proving a rapidly escalating flare – but either way, as its new we need to rule out anything more sinister.

Death Toe was discussed again with Dr – swab from Friday was clear but in terms of relevance not so relevant : once I’d discussed yesterday’s dressing change and flashed pictures, she said we are doing another swab today. If this and a good old fashioned look is showing a failure to abide by the clean, dry and shrivelling rules by this point, I think the (lack of) healing risk will be outweighed by the continued infection/reinfection risk posed AND the fact I can’t have any new immunosuppressants and am flaring up quite quickly.

To rephrase this, the sort-of good news with this is that if it looks bad enough tomorrow I might be at the point where an amputation is seen as a medically legit option… It feels weird to be wanting that haha 😀 My eight non-thumb fingertips are now almost permanently dusky blue and are numb or tingly all the time now 😦 (this is called peripheral neuropathy!) – and if the eyesight thing is small vessel vasculitis in any way, I think that trumps all other concerns and I will be immunosuppressed up to the eyeballs as fast as we can get Death Toe off and just manage the wound as it happens.

That got very medical!! Ok, the other key points are I didn’t cry – which was super helpful for my pride if nothing else! – and I didn’t get left with any unanswered questions and have some clear rules outlined for what is going to be happening. About as good as it could have gone really :/

 

This one got a bit long as DT was kicking off big time and I am loaded to the eyeball level with oramorph, so already think it appropriate to double-post kitten doodles – I SO nearly achieved the 48 hour ‘only dressing change’ plan; really pissed off with that last 30 mins 😦 It is quite hard to turn off the word tap when on drugs, but it has by now simmered down so can possibly try now!!

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Have a pic of my fave horse-dog to end on. As well as the mental image of my Granny having learned to use the internet and becoming very very keen on wiki-leaks and conspiracy theories of all kinds, rather than soft fluffy kittens and knitting patterns. E.g. 9/11 and the Clintons being Satanists… That’s my Granny!!! Yeahhhhhhhh.

 

 

 

 

 

 

 

2 thoughts on “Day 30/31- no one get too excited, I don’t have kittens :( By no one, I mean me. Kath, don’t get too excited. *****UPDATED DEATH TOE PIC ALERT*****

  1. OMG. Kath. Death toe looks an absolute mess and so so painful!! Sincerely hope it will soon be removed!! You must be at the end your tether by now!!! Will be waiting to hear tomorrow for the next news!! I am truly in awe of you and how you continue the whole nightmare situation!! Big hugs!! Love your comments about your Grannie!!! Reading today about Nostradamus and his prophesy about Trump !!! Well my dear try to stay calm !!!

    Like

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