Kath utterly fails at being a bitch, names her knitting (all the cool kids do) and has THE BEST small visitor! Death Toe is… Well… Still dead. Day 25 of Bay Life! KATIE MAJOR FOOT ALERT – everyone else – not too bad at all, she is just delicate hehe!

I will begin this evening’s teachings by thankfully being able to confirm that my town has NOT been invaded by dinosaurs whilst I have been in here. Not especially a big fan of the idea, still unable to watch even a few minutes of Jurassic Park or The Lost World >.< So got some clarification for the sake of having the opportunity to check – and yep, we are still dinosaur free at home! Creepily, one of my ‘friends’ has JUST contaminated my facebook wall with dinosaur related ickness. Spooky 😀 Below is literally the ONLY circumstance in which I will acknowledge a dinosaur. (That and the awesome dino-ish spiked knitted baby hats a friend is currrently magicking up!)

kk

I  had a lovely lovely baby cousin visit today – with Auntie escorts, but lets be honest, its all about him 😉 He brought an entire tub of toys for me to play with and despite being shattered after his first swimming lesson ever, managed to half-suck lots of grapes to death, charm the tea trolley ladies into getting a cup of tea (boy had all the winning moves – “Ta!” worked well!) and stand/jump around a lot on the windowsills 😀 If she had witnessed that, the ward Sister would lose her mind haha – she already finds my corner ‘trying’ – the phrase “sent to test me” has been used more than once, due to my erm… skill! at exploding kathishness all over the place, in what is supposed to be a very clean, sterile environment! Its almost as if sock fluff and oodles of books and sheets of paper were difficult to keep hygienic :O

I was going to do the usual ‘bit more medical’ segment, but honestly? Nothing happened today, except a five minute chat with a junior Dr who couldn’t confirm or deny anything and has just said she would pass everything on. I sadly then didn’t see the consultant covering me whilst my Dr is of. I had set limited – what I thought achievable! – questions for today, wanting particularly to know exactly what Death Toe ‘auto-amputating’ is going to involve. I can’t imagine it being anything other than increasingly painful, have no idea how the bone part is handled, have no idea as to whether or not the very jagged stub edge would be tidied (assuming the current demarcation line is where we parted ways)…. Or if it is merely a delaying measure until an amputation CAN go ahead.

I had the punch biopsy yesterday and can confirm that today it DOES hurt, as the stiches have started to pull. The junior Dr was basically able to imply that nothing would be done this week in total, until my Dr was back, excepting the biopsy and the mri of my leg – which with it being Friday will likely happen next week now anyway. Bleeh. I am in a rather more vile mood today as opposed to yesterday – partly as Death Toe HURTS a lot at the moment, as he unknits from Kath Toe…

The below picture is of the same toe but from my other foot; it had started to become damaged and ischaemic a good three months BEFORE Death Toe and for whatever reason, just never kicked off. Until now. The last few days – when I was on the sodding iloprost designed to prevent exactly that – both that toe and all of my fingers have gone dramatically more ischaemic (bluey, purple, cold and mottled skin). Basically showing that the circulation to the tips has decided to quit. Pretty huh!

Taking name suggestions for the below toe please…

mini

Whilst typing this, I have had a bit of an email conversation with one of the wonderful people behind the Vasculitis UK charity and the very act of outlining all of my woes in an email has riled me. Realistically, if they were to keep me in until I had a diagnosis, treatment and Death Toe fell off, I would be in here past Christmas. So tomorrow is action day. Didn’t even make a toe pun there. That is serious Kath talking! Especially irked that I have no idea still if a referral was officially made. Apparently ‘only my Dr’ could answer that one. Which implies not, as surely that is why patients have notes…

In Bay Life news, there was a lady in for just one night yesterday opposite me, who had a bizarre habit of laughing in her sleep, despite barely being able to talk. It was a rather sinister laugh – akin to a cackle, quiet and low, but with a hint of mwohahaha – and it kept me absolutely wide awake from about 4am onwards! Hospital wards are incredibly creepy places when the lights get turned off 😀

I spent the afternoon in a very grim mood, just from the now usual lack of any kind of news/progress/contact this week, so when a new lady moved in to take the laughing woman’s ‘room’, I didn’t see her or introduce myself whilst she was being settled. As opposed to normally being an overly enthusiastic nosy character! I overheard her gushing to family and nurses alike how overjoyed she was to be coming in to get rituximab asap… The drug that I got admitted to receive four weeks ago. Being in a contrary mood, I decided to try starting off not liking someone ‘just because’ for a change – and I went so far as to tell the online support group and several probably bemused relatives and friends – that this elderly lady was basically stealing my drug from the fridge as the infection/lack of concrete diagnosis have meant I can’t have it yet 😦 I basically had her (and her entire family and all of the cows on her farm) written up to be a proper nemesis – some kind of embodiment of all that was wrong and ridiculous about Bay Life and ‘the system’… AND then she bloody well went and fell about a metre away from me within the first half hour, whilst I was determinedly sulking behind my curtain. I had to pull back the curtain and call a nurse asap and had to face the fact that actually, she wasn’t the anti-christ, she was just a very lovely lady from good old Cumbrian farming stock, who was excited about a new treatment and didn’t deserve to be hated because I was feeling sulky… and who had also just walloped her head and was too stiff and sore to stand up herself. I am CRAP at being assertive or mean or angry!!! Can I make this a ‘blame the parents for being a sap’ one maybe??

I was also managing a proper actual bitch for nearly ten minutes about another woman earlier on (didn’t learn my lesson!) who was continually rejecting her meds, blaming the antibiotics for everything you can imagine and huffing about relatively incredibly small things. It was bloody obvious to me four days ago that she had lupus – the word had not been said, but it was always a potential diagnosis for me originally, so I learned about it and the signs were incredibly obvious. So I was gobsmacked and shamed and felt like an utter cow when she came over to me upset for a chat, and it came about that she was only told yesterday she had lupus, had had no explanation of what this was or even what a chronic illness was, was given meds she had no idea why she was taking and was frustrated and confused as heck. Whether through her lack of comprehension or lack of explanation, I couldn’t say, but I ended up going down the corridor to the main rheumy hang out zone (furthest walk in weeks!) and getting her a very basic intro to lupus printed off. The fact that it covered all of the symptoms she had come in with was even news to her. I obviously stressed that I wasn’t a better option than a chat with her Dr, but I found myself essentially breaking the news to this lady that she had a chronic illness, what that meant, what lupus was, what the symptoms were, what meds she was on and why she was on them – and that no, they couldn’t possibly have been expected to work by the afternoon. I saw her talking to the Dr later on, so hopefully all is well, but given how long it took me to start grasping the idea of a chronic illness diagnosis, when I already very much objectively comprehended what that meant long before I was ill, I felt woefully unprepared to have that discussion with someone so uneducated about it.

To end on happier notes, I am currently eating a lot of pringles for some reason as I type, which at midnight feels a bit weird and is very unlike me. The tiny bear I am making still has been named Weenie and inside-friend and other faves are all coordinating to do washing, feed fish and tings – which warms my inner hearty bits! I celebrated the coming of the evening by asking for some pre-emptive movicol (makes your tummy forget all the oramorph and decide that yes, maybe one day you can poo…) and blowing bubbles in it for a good minute’s worth of amusement because someone foolishly gave me a straw. I am definitely easy enough to keep entertained!! At this exact moment, whilst doing a quick spellcheck/edit, we are having a conversation through the curtain whilst Bay neighbour uses the commode, all about the perils of having big boobs – it has now descended to demonstrating golf swings with a massive chest in the way – and the importance – or not – of having matching underwear sets… I chipped in with Mum’s theory that if you DON’T have matching underwear on and you are in an accident, the paramedics will be so busy judging you for being a dosser, that you would be statistically much more likely to perish at the roadside. The jury are hung on this one in the Bay…

Finally! People of the outside world…Does anyone know why skype will NOT work in here on android phone OR laptop?? Is it a microsoft account issue? – password and login details etc. ok, just cannot get skype to load! NHS internet block?? I have brothers in weird places fondling turtles that I need to check up on!!

 

 

One thought on “Kath utterly fails at being a bitch, names her knitting (all the cool kids do) and has THE BEST small visitor! Death Toe is… Well… Still dead. Day 25 of Bay Life! KATIE MAJOR FOOT ALERT – everyone else – not too bad at all, she is just delicate hehe!

  1. Hi Kath. missed this earlier. had moved it to saved, and now just getting round to reading it!! Once again a terrific blog!! —-My suggestion for the other toe—–Tearful Toe! But am sure many others have also made the same suggestion !! We are now of course more up to date with all that is happening to you!!! Hope you can continue with this super blog!!!

    Like

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